A Family’s Perception of Childhood Cancer Survivorship: A case study in resilience

by

Lisa-Marie Bianchi

A thesis submitted in conformity with the requirements for the degree of Developmental Psychology and Education

Graduate Department of Applied Psychology and Human Development Ontario Institute of Studies in Education

University of Toronto

© Copyright by Lisa-Marie Bianchi» 2016

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A Family’s Perception of Childhood Cancer Survivorship: A case

study in resilience

Lisa-Marie Bianchi

Master of Art in Developmental Psychology and Education

Graduate Department of Applied Psychology and Human Development Ontario Institute of Studies in Education

University of Toronto

2016

Abstract

Research on families experiencing childhood cancer and life in remission has focused on

negative outcomes and variables. Few studies have explored the process of family resilience

through this type of adversity. The purpose of this qualitative case study is to describe the

experiences of a family who has survived a paediatric cancer. The central question that informed

the study is: What are the accounts of members of a family in dealing with childhood cancer and

life in survivorship? One family was interviewed over several months and continued to assist in

the data analysis and creation of the findings for this study. It was found that cancer subculture

and online community support promoted resilience and adaptation for the family as they dealt

with the demands and stress of childhood cancer and remission. Recommendations to the

Resiliency Model of Family Stress, Adjustment, and Adaptation, healthcare professionals, and

further research were discussed.

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Acknowledgments

I owe my deepest gratitude to my advisor Dr. Richard Volpe. From the moment I shared my

research interest with you during my undergraduate degree, you have passionately given me the

motivation I needed to successfully bring my research ideas to life. Thank you for your

irreplaceable knowledge and understanding over the last couple of years. I am honoured to have

been one of your students. I would also like to sincerely thank my committee member Dr.

Kimberley Widger. Your perspective and knowledge in the nursing field has been invaluable to

my paper.

Many thanks to all the families I have met during my time in college, undergrad and my

master’s education. The disclosure of your experiences has illuminated my research interests and

inspired me to continue my education. I must also acknowledge the family in this study to whom

I had the pleasure of interacting with over the past several months. Thank you for your

willingness to share your story. You have been a source of strength for me as we both faced the

adversity of cancer in our lives.

My friends. You know who you are. Thank you for all the instrumental discussions we

have shared. Your support and encouragement during this time has been vital in the completion

of my thesis. I would also like to give my brother special recognition. Thank you for helping me

understand. Our journey together has given me a deeper sense of compassion that I never

thought could existence.

…To my parents, who have taught me the value of hard work. Thank you for teaching me

kindness and offering me the world. I could not stand where I am today without the support you

both have given me. I hope to make you proud one day with the work I will do helping others.

Lastly, I dedicate this thesis to all the tiny humans and their families who have been affected by

cancer. Your remarkable strength and resilience continues to astound me everyday.

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“If ever there is a tomorrow when we are not together there is something you must remember…

you’re braver than you believe, and stronger than you seem, and smarter than you think”

-Christopher Robin to Winnie the Pooh

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Table of Contents

Table  of  Contents  

Acknowledgments  ..............................................................................................................................  iii  

Table  of  Contents  ..................................................................................................................................  v  

List  of  Figures  .....................................................................................................................................  viii  

List  of  Appendices  ...............................................................................................................................  ix  

Chapter  1  Introduction  .......................................................................................................................  1  

Purpose  of  the  Study  and  Research  Question  ........................................................................................  2  The  Researcher  ................................................................................................................................................  3  Study  Overview  and  Organization  .............................................................................................................  4  

Chapter  2  Literature  Review  .............................................................................................................  5  

Introduction  ......................................................................................................................................................  5  Resilience  ...........................................................................................................................................................  5  History  and  definition  ...................................................................................................................................................  5  

Concepts  Associated  with  Resilience  ........................................................................................................  6  Antecedents  and  consequences  of  resilience  ......................................................................................................  6  Protective  factors  and  protective  process  ............................................................................................................  7  Hardiness  ............................................................................................................................................................................  8  

Ecological  Resilience  ......................................................................................................................................  8  Ecological  and  Family  Resilience  ...........................................................................................................................  11  

Family  Resilience  .........................................................................................................................................  12  History  of  Family  and  Family  Resilience  ............................................................................................................  12  Understanding  Family  Resilience  ..........................................................................................................................  13  Significance  of  Relationships  ...................................................................................................................................  14  Systems  Theory  of  Family  Resilience  ..................................................................................................................  15  

Family  Resilience  and  Childhood  Cancer  .............................................................................................  17  Experience  of  caregivers  and  siblings  of  children  with  childhood  cancer  ..........................................  18  Experience  of  children  with  childhood  cancer  ................................................................................................  19  

Childhood  Cancer  Survivorship  ...............................................................................................................  20  What  is  survivorship?  .................................................................................................................................................  21  

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Survivorship  and  positive  outcomes  ...................................................................................................................  21  Theoretical  Framework  .............................................................................................................................  23  The  Resiliency  Model  of  Family  Stress,  Adjustment,  and  Adaptation  ...................................................  23  The  Adjustment  Phase  ...............................................................................................................................................  25  The  Adaptation  Phase  .................................................................................................................................................  25  

Summary  .........................................................................................................................................................  26  

Chapter  3  Methodology  ...................................................................................................................  28  

Qualitative  Research  Design  .....................................................................................................................  28  Case  Study  .......................................................................................................................................................  29  The  Participants  ...........................................................................................................................................  31  Inclusion  and  exclusion  criteria  .............................................................................................................................  32  

Data  Collection  ..............................................................................................................................................  32  Interview  ..........................................................................................................................................................................  32  Artifacts  ............................................................................................................................................................................  33  

Analyzing  Data  ..............................................................................................................................................  33  As  the  study  continues…  ............................................................................................................................  34  

Chapter  4  Their  Story  .......................................................................................................................  36  

Family  Background  ......................................................................................................................................  36  Diagnosis  .........................................................................................................................................................  38  Process  .............................................................................................................................................................  40  Resources  ........................................................................................................................................................  45  Outcome  ..........................................................................................................................................................  52  Artifacts  ...........................................................................................................................................................  57  

Chapter  5  Discussion  ........................................................................................................................  60  

Addie  .................................................................................................................................................................  60  Noah  ..................................................................................................................................................................  63  Nathan  ..............................................................................................................................................................  65  Resources  ........................................................................................................................................................  67  Family  and  friend  support  as  resources  .............................................................................................................  67  Online  resources  ...........................................................................................................................................................  68  Community  support  and  resources  ......................................................................................................................  70  

Chapter  6  Conclusion  .......................................................................................................................  72  

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Theoretical  Significance  of  The  Resiliency  Model  of  Family  Stress,  Adjustment  and  

Adaptation  ......................................................................................................................................................  73  Hospitals,  Childhood  Cancer,  and  Further  Research  ........................................................................  75  Reflection  ........................................................................................................................................................  76  Final  thoughts  ................................................................................................................................................  78  

References  ............................................................................................................................................  80  

Appendix  A  Ethics  Approval  Letter  .............................................................................................  88  

Appendix  B  Interview  Guide  ..........................................................................................................  89  

Appendix  C  Recruitment  Tool  .......................................................................................................  90  

Appendix  D  Adult  Consent/  Information  Form  .......................................................................  91  

Appendix  E  Child  Assent  Form  ......................................................................................................  96  

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List of Figures FIGURE  1.  NATHAN’S  CAMP  NECKLACE.  .........................................................................................................................................................  58  FIGURE  2.  ADDIE’S  YARN  BRACELET.  ..............................................................................................................................................................  58  FIGURE  3.  NATHAN’S  BRAVERY  BEADS.  ..........................................................................................................................................................  59  FIGURE  4.  ADDIE’S  TATTOO.  ............................................................................................................................................................................  59  

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List of Appendices

 

Appendix  A:  Ethics  Approval  Letter  ........................................................................................................  88  

Appendix  B:  Interview  Guide  ....................................................................................................................  89  

Appendix  C:  Recruitment  Tool  ..................................................................................................................  90  

Appendix  D:  Adult  Consent/Information  Form  ..................................................................................  91  

Appendix  E:  Child  Assent  Form  ................................................................................................................  96  

 

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Chapter 1 Introduction

When a child is diagnosed with cancer, the entire family can be affected. Fortunately, the

amount of children surviving their paediatric cancer is on the rise in Canada. The Childhood

Cancer Canada Foundation (2011) states that more than seventy percent of children diagnosed

with cancer survive and remain in remission. Currently, childhood cancers have a seventy-five

percent survival rate, with Leukemia being the highest at ninety percent (The Childhood Cancer

Canada Foundation, 2011). These numbers looked quite different sixty-five years ago; in the

1950’s, less than ten percent of Canadian childhood cancer patients survived (The Childhood

Cancer Canada Foundation, 2011). It is evident that there is a population of children and

families who continue living with the aftermath of such impactful adversity. The Childhood

Cancer Canada Foundation (2011) also recognizes this growing population of families and

encourages ongoing research of the long-term psychosocial effects of treatment and survivorship

on children and families.

Other scholars have also recognized a need for research that explores and understands

children and their families through cancer treatment and beyond. McCubbin, Balling, Possin,

Frierdich and Bryne (2002) explain that, “There is a need for a shift in the research away from

coping with disease that was invariably fatal to gaining a better understanding of how the child,

parents, and the family unit adapt and recover after treatment and in long-term survival” (p.111).

Woodgate (2006) also identifies that children and families who survive cancer are faced with a

new set of challenges that must be understood so that comprehensive and sensitive care can be

provided. Currently there are studies that investigate issues regarding childhood cancer treatment

and survivorship; however, they place concentration on negative psychosocial outcomes of

children and their families rather than resilience and adaptation.

This study was created in hopes of understanding one family’s unique experience with

childhood cancer and life after treatment. Focus will be placed on sharing their story while

highlighting elements of resilience and adaptation. The family and I interacted within their home

where several interviews were conducted that enticed discussion and conversation. It was

through this medium that a detailed and descriptive account of the childhood cancer experience

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emerged. The nature of the interviews allowed family members to disclose a story that was

meaningful to them. We then worked together to create the story illustrated here. Their

knowledge and perspective was welcomed and utilized during the analysis phase of the study in

addition to the findings that follow.

This study contributes research to family resilience literature, specifically, family resilience

in response to paediatric illnesses. The Resiliency Model of Family Stress, Adjustment, and

Adaptation (RMFSAA) by McCubbin and McCubbin (1987, 1989) was reflected upon to gain a

theoretical understanding of the process families may go through in order to successfully adapt to

the demands and stress of childhood cancer. This model was utilized in the discussion in order to

understand its elements in relation to the family’s experiences. This was not meant to be a

professional assessment on the family but a review to appreciate the resilience and adaptation

that was observed.

This study provides knowledge and insight into the world of childhood cancer and

resiliency. This case study focuses on the family’s story as a force of example leading to the

transferability of knowledge. The knowledge gained from this case study contributes to the

growing literature on resilience and childhood cancer, as it is a significant way to advance

scientific innovation and progress (Flyvberg, 2011). Lastly, this study aims to discover

implications for healthcare professionals that interact with this population of families.

Understanding how families cope with childhood cancer may lead to better-quality assessments

by healthcare professionals. This may also lead to improved resources and tools for families in

the process of adapting to the demands and stresses of childhood cancer.

Purpose of the Study and Research Question

The purpose of this qualitative case study is to describe the experiences of a family who

has survived a paediatric cancer. In order to explore this idea, a central question was developed.

Sub-questions were not utilized, as I wanted to share the information and their story in its

entirety. The central question that will inform the study is: What are the accounts of members of

a family in dealing with childhood cancer and life in survivorship?

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The Researcher

I have had an interest in childhood cancer and social-emotional development since my

college and undergraduate education. It was during my undergraduate degree that I decided to

continue my education and attend graduate school. I wanted the opportunity to explore the

questions that I had developed during my time in school while working in paediatric placements

and internships. During this time, I also realized how much I enjoyed working with families in a

hospital setting. These families inspired me beyond recognition; I remember and will always

remember every single family I had the pleasure of meeting. I was honoured to be able to learn

and work in this environment together.

During the ethics approval process for this study, my younger brother was diagnosed with

Hodgkin’s Lymphoma. After hearing this news, I soon recognized that my study and its process

would look differently from what I had originally anticipated. I now have a bias towards this

type of research that fortunately, I have an outlet to discuss given the nature of this study. A

greater passion and motivation for my study instantly developed. I felt like this study was going

to have a greater magnitude of meaning. These feelings existed prior to his diagnosis; however,

they were now amplified to a new level. This study is qualitative in nature as it seeks to find

meaning and understanding of rare experiences by those living in it. What I realized as I

continued to develop my study is that not only would the family be clarifying the meaning of

their experiences with cancer, but I would be too. My own self-reflection was awakened through

this study as cancer, for the first time, was in my immediate relations.

I want to acknowledge the bias that pertains to me as the researcher. I understand that the

findings of this study may not be that of a similar study with a different researcher. While

spending time with the family, discussions may have been explored more thoroughly on topics

that were significant for both of us as we were facing similar adversities. There were moments in

the interview process that I felt necessary to share my point of view and personal experience.

Although our connection was instant, these discussions were a way for us to deepen our

connection to each other. Since we shared a direct experience with cancer together, I believe this

enabled both the family and I to comfortably disclose the information and stories that we did.

This bias is viewed as a positive strength for this study.

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My personal involvement in this study allowed me to discover and give meaning to the

adversities my family was experiencing. Interacting and listening to their story was a source of

strength for me. I hope my biases in this study are appreciated as going through this event has

facilitated in a better understanding of this family’s story. The study is illustrated in a way that

both the family and I view as a process one travels through, beginning at the diagnoses and

continuing through to life in remission. I understand that objectivity is valued in academia. Even

though this study is subjective in nature, I was committed to reflecting upon my bias, challenging

my bias, and always being aware of my ‘self’ during the research process. I believe this resulted

in an authentic data analysis and a greater depth of the findings presented.

Study Overview and Organization

This study shares one family’s experiences with childhood cancer and life in remission.

Remission is often referred to as survivorship throughout the study. The family consisted of a

mother named Addie, her son Nathan who was diagnosed with cancer, and his older brother

Noah. The names of the family members have been changed to protect their privacy. The

remarks from the family should be viewed as a story as that was the path they chose to discuss

their experience through.

Following this chapter, literature on the history of resilience and related terminology along

with family resilience and childhood cancer studies is presented. Chapter 3 includes a description

of the methodology selected for the study. This chapter provides a justification for selecting the

single case study method as well as an overview of the process of obtaining the family’s story. In

Chapter 4 the family’s story is illustrated in the following sections: family background,

diagnosis, process, resources, and outcome, while Chapter 5 includes a discussion of each family

member’s unique account of the experience. Chapter 6 concludes the study by providing

recommendations to the framework reflected upon for the study, future research, and a final

reflection.

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Chapter 2 Literature Review

Introduction

The literature review was conducted to understand psychological experiences of childhood

cancer and resilience among families. The literature highlights key concepts as well as a

rationale for the current study. The literature provided reflects resilience and related concepts,

ecological resilience, family resilience, and childhood cancer survivorship. Specifically, family

resilience and childhood cancer, the experiences of children with childhood cancer, siblings and

caregivers’ experience with childhood cancer, positive resilient outcomes, and families’

experiences with survivorship were explored. The subsequent section explores the theoretical

framework that was reflected upon during study followed by a justification of the studies

reviewed in this chapter.

Resilience

History and definition

The concept and definition of resilience has been a topic of debate for researchers in this

field. Resilience does not have a consistent definition and has resulted in many research and

methodological issues. In its simplest form, the Oxford Dictionary (2014) defines resilience as

the ability of a substance or object to spring back into shape; elasticity or of a person or animal

being able to withstand or recover quickly from difficult conditions. Rosenberg, Baker, Syrjala,

Back, and Wolfe (2013) explain, “Some argue that resilience relates to a pre-existing trait that

allows individuals to thrive in the face of adversity” (p.645). They tend to agree that resilience is,

“One’s ability to withstand stress or bounce back from traumatic experiences” (Ronsenberg,

Baker, Syrjala, Back, & Wolfe, 2013, p.645). Ronsenberg et al. (2013) contribute an additional

idea stating that resilience is, “A dynamic process of positive adaptation, and a final outcome or

relatively positive state of being” (p.645). It is this ideology of resilience that will be reflected on

upon during the study.

For the psychological sciences, “The term began to appear with frequency in the 1980’s

and was a metaphor for the ability of individuals to recover from exposure to chronic and acute

stress” (Ungar, 2012, p.13). These narrow definitions are representative of the first wave of

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resilience research. The early research on resilience tended to examine selective strengths and

assets such as intellectual functioning that helped people survive adversity (Herrman et al.,

2011). Most early studies focused on the individual as the locus of change while the environment

was merely considered for its influence on the individual (Ungar, 2012). During this time,

character traits of the individuals in question were the overpowering interest. Norman Garmezy

(1991) was one of the first to study resilience while introducing concepts such as vulnerable

child. Garmezy studied resilience in relation to negative life events such as children living in

poverty and experiencing child abuse (Garmezy, 1991, 1991).

Before resilience was well established within the research field, ‘invulnerable’ was a term

that was used interchangeably with resilience (Earvolino-Ramirez, 2007). Rutter (1993) notes

that it is important to examine why there was a shift from invulnerability to resilience. The term

invulnerability failed for several reasons. The term implied that there was a sense of absolute

resistance to damage and avoiding risk (Rutter, 1993; Earvolino-Ramirez, 2007). As research

emerged, it was discovered that this is not the case. Rutter (1993) assures us that, “No one has

absolute resistance; rather, it is more appropriate to consider susceptibility to stress as a graded

phenomenon” (p.626). Everyone responds to different events with varying degrees of resilience

and vulnerability (Earcolino-Ramirez, 2007).

The term vulnerability also failed as it was applied to all risk circumstances and that

vulnerability was an intrinsic feature of the individual (Rutter, 1993). Fortunately, current

research has shown that resilience also occurs within social settings and communities. This

clarifies that the individualism idea may not be as inherent as one once thought. Vulnerability

also suggested unchanging characteristics; however, “Developmental changes will influence

resilience just as they influence any other characteristic’ (Rutter, 1993). As Earcolino-Ramirez

(2007) mentioned, vulnerability is still present in today’s research but is used interchangeably

and in regards to other elements in resilience research.

Concepts Associated with Resilience

Antecedents and consequences of resilience

The literature examining resilience describes antecedents and consequences of resilience.

The main antecedent to resilience is adversity (Earvolino-Ramirez, 2007). Adversity must occur

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before resilience can take place. Richardson, Jensen, and Kumpfer (1990) explain that

individuals who are facing uncontrollable life events decide consciously or unconsciously to

rebuild and bounce back. Richardson (2002) explains further that, “It is through these disruptions

that we learn to tap into resilient qualities and achieve resilient reintegration” (p.310). Adversity

can occur quickly in life or present itself chronically, such as a diagnosis of an illness. Yin,

Rong, and Lee (2013) note that other antecedent factors can include any long-term stress and

strains that have accumulated over time.

Consequences relating to resilience have been described as significant outcomes relating to

effective coping, mastery, and positive adaptation (Earvolino-Ramirez, 2007). These outcomes

can be described as part of one’s adaptive capacity. Baltes (1987) refers to adaptive capacity in

his life span development work, noting that individuals’ responses to change are dynamic and

continuous over the life span. Dyer and McGuinness (1996) go on to describe resilient

consequences as, “A toughening effect, a sense of having overcome one situation so that active

mastery of other situations is possible, and effective coping as the primary consequence” (p.277).

Yin et al. (2013) explains that, “Providing care for individuals who are less resilient and being a

valued member of the community allows people to build supportive networks and thrive in spite

of stressful situations can be rewarding for caregivers adding to their own resilience” (p. 330).

Yin et al. (2013) also makes note that individuals who present this type of resilience are better

caregivers for chronically ill children.

Protective factors and protective process

Many quantitative studies tend to evaluate and measure resilience by investigating

protective factors and protective processes. Dyer and McGuinness (1996) define protective

factors as specific attributes or situations that are necessary for the process of resilience to occur.

Researchers will often gather lists of protective factors within their work. Rutter (1987) warns

that we should be weary of the meaningfulness of these factors; however, protective factors are

significant as they are often predictors of resilience. Rutter (1987) emphasizes that, “It is the

protective processes that are of greater value in determining approaches to enhance resilience

and thereby preventing negative outcomes” (as cited in Earvolino-Ramirez, 2007, p.76).

Protective factors are situational, contextual, and individual in nature and lead to diverse

outcomes (Johnson & Walker, 2004). For example, Johnson and Walker (2004) explain that the

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protective factors that may be present in helping an individual recover may be entirely different

for another individual. Rutter (1987) refers to protective process or protective mechanism as,

“The catalytic or reverse-catalytic effects by which a feature modifies the influence of some risk

factor” (p.630). These processes may include reduction of risk impact, opening of positive

opportunities, and self-efficacy (Rutter, 1987). Later, Rutter (1993) concludes, “Attention needs

to be paid to the mechanisms underlying the developmental processes that enhance people’s

ability to cope effectively with future stress and adversity” (p. 630). Understanding protective

processes may allow researchers to account for individuals’ resilient outcomes. This idea should

be cautioned when exploring resilience of units such as families or community.

Hardiness

Hardiness is a common term relatable to resilience. The Oxford Dictionary defines

hardiness as the ability to endure difficult conditions. Bonanno (2004) shares that unlike

resilience, hardiness is viewed as a personality trait. Similarly, hardiness has also been described

as, “A dispositional characteristic that includes a sense of control over ones life, a commitment

to ascribing meaning to one’s existence, and viewing change as a challenge” (Herrman, et al.,

p.262). Yin et al. (2013) describe hardiness as an individual’s determination, strong will, and

active participation in the caregiving process. Given its individualistic nature, hardiness is often

associated with the first wave of resilience research.

It is important to note that hardiness and resilience are different. Resilience, as viewed in

this study, results in an improved or enhanced adaptive outcome. Hardiness, allows for

endurance but not necessarily a positive change or outcome (Earvolino-Ramirez, 2007). Yin et

al. (2013) also recognizes that, “Hardiness allows individuals to overcome adversity deliberately,

but does not require the results of change to be positive” (p. 329). Given this research, hardiness

would not be successful in understanding complex change that is necessary for this study. The

term places a barrier on continual growth and adaptation of families experiencing stress or

adversity. Protective factors will be further explored below.

Ecological Resilience

Ecological resilience was explored in order to better understand the family resilience

research as well as resilience within social and community contexts. Ecological resilience

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originated from the field of environmental studies. Kurt Lewin (1890-1947) was one of the early

researchers to assert that human development occurred in an ecological framework. Leven

stressed that we must examine both personal characteristics and the environments that surround

us to understand successful outcomes of those living in adverse situations (Ungar, 2008). Urie

Bronfenbrenner (1979) studied under Leven and went on to develop the Ecological Systems

Theory.

Bronfenbrenner’s Ecological Systems Theory (1979) indicates that different spheres of

influence exist that shape an individual’s (child’s) outcome and later development. In his

approach, the child is illustrated in the centre of a bioecological system that consists of circular

layers. These layers are representative of the child’s interactions and life environments. The two

layers closest to the child are known as the microsystem and mesosystems. These systems

involve settings in which the child has direct daily experiences such as family, daycare, or school

(Bee & Boyd, 2007). The outer layer is known as the exosystem, which include elements that

the child does not interact with daily such as the caregiver’s employment and networks of friends

(Bee & Boyd, 2007). The outer spheres, macrosystem and chronosystems, may be the most

complex. These systems involve culture, customs, the larger community, and the world the child

lives in.

It was Rutter (1987) who brought forth a change in the resilience research that genuinely

questioned environmental factors. Rutter (1987),

“Helped shift the understanding of resilience as the result of individual traits that predicted coping under stress to processes that included reducing risk exposure, developing adequate self-esteem, preventing the negative impact of risk factors on developmental trajectories, and opening new opportunities for development by shaping the child’s environment” (Ungar 2012, p.14).

As noted earlier, we still see ambiguity in the literature when defining resilience. Ungar (2012)

reiterates Rutter (1987) as he believes; “The problem has been partially the result of a dominant

view of resilience as something individuals have rather than a process that families, schools,

communities, and governments facilitate” (p.1).

The field of ecological resilience research has been contributing significant ideas regarding

how resilience may be observed and studied. This field places emphasis on encompassing the

family, community, and resources within the network of those in question. Goldstein and Brooks

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(2013) state, “Rather than asking questions about why a child is resilient, questions are asked

about bidirectional connections between the child and his or her context” (p.23). The

concentration on environmental variables in this research, “Gives a deeper understanding of the

process that contributes to positive development under stress” (Ungar, Ghazinour, & Richter,

2012, p.348). In this ecological view of resilience, Ungar (2012) defines resilience as, “A set of

behaviours over time that reflects the interactions between individuals and their environments, in

particular the opportunities for personal growth that are available and assessable” (p.14).

Currently, Ungar (2013) is leading the field of work in ecological resilience. He has created

multiple ongoing studies that continue to contribute to the shift that we are seeing in resilience

research from individualism to the interactions between individual and their communities. He

has suggested four principles that facilitate a better understanding and definition of resilience:

decentrality, complexity, atypicality, and cultural relativity. In doing so, Ungar (2011) anticipates

this framework will help debunk the individual trait-process of resilience that unfortunately still

exists.

The first principle, decentrality, focuses on the individual and their social and ecological

environment first, interactional processes second, and individual-specific elements third (Ungar

2011). Ungar (2011, 2013) suggests that when we decenter the individual from the equation, a

better understanding of resiliency can be observed. The second principle, complexity, reminds

researchers that, “Positive growth under adversity and protective processes that cause it to occur,

are too complex to contribute to the prediction of singular development” (p.6). Adding that,

different models need to be established that are contextual and temporary in nature to explain

resilient outcomes (Ungar, 2011). Atypicality refers to the way environments protect individuals

when resources are limited; concentration is placed on understanding functionality of behaviour

and less on predetermined processes and outcomes (Ungar 2011). The fourth principle, cultural

relativity, recognizes that culture needs to be reflected upon as a key process of resiliency as it

counts towards positive development during adversity (Ungar, 2011). From this framework,

continual research is required to further change the views of researchers in the field of resilience.

Rutter (2005) and Ungar (2011; 2013) agree that emergent studies exploring cultures and various

contexts are needed so that a process-orientated understanding of the resilience can exist.

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Ecological and Family Resilience

As mentioned, Ungar (2013) brings attention to the examination of communities and

social environments that must take place when assessing connection between experiences of

hardship and resilience. A significant aspect of the social environment that is closest to an

individual is the family they reside in. Walsh (2003) agrees that family resilience needs to be

viewed from an ecological perspective. Hardships that families experience may result from

biological indictors such as illness or sociocultural influences like poverty (Ungar 2013; Walsh

2003). For this reason, family resilience takes into account not only the individual family

members and their family units but also the larger social systems that the family is centered

around (Walsh 2003). Walsh (2003) sheds light on larger social systems and their importance,

“The family, peer group, community resources, school, work settings, and other social systems

can be seen as nested contexts for nurturing and reinforcing resilience” (p.3).

McCubbin, McCubbin, Thompson, & Thompson (1995) share suggestive research that

highlights, “Greater resilience is found in families who reach out to others in their social

environment, including extended family, friends, and community members and resources” (as

cited in Simon, Murphy, & Smith, 2005, p.428). Patterson (2012) comments on community

resources,

“Many of the resources families need to fulfill their functions only become available to them by virtue of public programs and policies that assure access to what is needed, such as affordable childcare. Therefore we need to be careful about blaming families for their high- risk status when, in fact, this status may reflect significant social inequalities” (p.239).

For this reason, more adequate resources should be placed in the ecological context in order to

assist families’ development of effective processes and family functioning (Patterson, 2012).

This would reduce the risk of hardships within this context as well (Patterson 2012). This could

be useful for those working in policy.

Ungar (2012) explains that with this new ecological perspective of resilience, researchers

are faced with many challenges. There is much to consider when assessing family resilience in

an ecological framework. Ungar’s (2013) work in resilience, trauma, and context brings forth an

imperative observation within this field of research. He explains that, “Discussions of what

resilience looks like in different cultures and contexts is showing many different ways that

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people cope with traumatic events” (p.263). Finding a single measure of resilience that is

appropriate across all contexts and all levels of exposure to risk is questionable (Ungar, 2013).

As we move forward and examine these ecological factors, there are further variables to

consider, “Making the science of resilience messy” (Ungar, 2012, p.1). Ungar (2013) continues

to explain that, “The variability of individuals in their responses and over time and across

contexts makes it unlikely that the same process is operating consistently, or the same outcomes

will hold across time and place” (p.263). It is important to note that much of the research being

conducted has concentrated on adversities of environments such as war, delinquency, abuse, and

culture (Ungar, 2013). Religious affiliation, loss, and poverty are also popular topics among

ecological resilience studies (Donnon, 2010; Bonanno, 2001; Yeh, Kim, Pituc, & Atkins, 2008).

This has influenced a need to further contribute to a growing body of literature on resilience in

the Healthcare field; specifically, exploring childhood cancer as a type of adversity that families

may face.

Family Resilience

History of Family and Family Resilience

In its most basic form, a family can be described as a system of two or more individuals.

Conventionally, the descriptions of nuclear families and traditional marriages were central in

historical research pertaining to family and marriage. Currently, most researchers and healthcare

professionals understand that families are diverse. There is a decrease in attempting to define

family as it often creates inclusion and exclusion boundaries as to what qualifies as an actual

family (Harris, 2008). To begin to understand family resilience, Patterson (2002) simply explains

that two or more individuals constitute a family’s make up (also known as family structure) and

the patterns of relationships between them serve as family functioning. When studying the

resilience of a family, questions brought forward are actually examining a family’s functioning,

which is multidimensional with several processes (Patterson, 2002).

Parallel to resilience, family resilience has moved through a historical cycle where its

meaning has changed and adapted to new theories and concepts. Previous family resilience

research placed focus on individual personality traits and coping styles that enabled children and

13

adults to overcome adversity along with an absent recognition of the importance of the family

unit (Simon, Murphy, & Smith, 2005) Walsh (2003) summarizes past resilience work,

“Family resilience research moved toward recognition of an interaction between nature and nurture in the emergence of resilience, yet tended to hold pessimistic narrow view of family influence. Most studies during this research focused on individuals who thrived despite parental dysfunction or maltreatment. Families were often illustrated as contributing to risk and not to resilience (p.2).

Walsh (2003) also mentioned that when resiliency research explored relationships among family

members, attention was placed on the significant relationships such as child and mother. Family

resilience has moved beyond this as it investigates the entire family as a unit whose resilience is

ongoing and emergent (Walsh, 2003; Patterson, 2002).

Understanding Family Resilience

Adversity that a family or family member encounters has a rippling effect that consequently

effects all members of the family (Walsh, 2003). Each family member contributes individually to

their family’s resiliency; the qualities and characteristics of the family unit as a whole influence

this resilience as well (Simon et al., 2005). Simon et al. (2005) presents three dimensions

associated with family resilience. The first dimension relates to the length of the adverse

situations faced by the family; short term is referred to as a challenge and long term is referred to

as a crisis (Simon et al., 2005). Patterson (2002) further explains that family crisis is, “When

demands significantly exceed a family’s capabilities and when this imbalance persists- a sense of

disequilibrium, disorganization, and disruptiveness occurs” (p.237). The second dimension

discusses the life stage in which the family encounters the challenge or crisis and the third

describes the internal and external resources of support the family uses during that time (Simon

et al., 2005, p.427-428). Consequently, it has been noted through longitudinal studies that the

strengths a family use to combat adversity during one life stage may be inadequate in another;

illustrating that resilience is continually developed through the life span of families (Simon et al.,

2005; Walsh, 2003). McCubbin and McCubbin (1988) have noted that some of the more robust

strengths and coping mechanisms, regardless of life stage, include high-quality martial

communication, satisfaction with quality of life, financial management skills, family

celebrations, family hardiness, family time and routines, and family traditions.

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Understanding resilient families is imperatively viewed as a process that families’ travel

through that does not necessarily end at the conclusion of an adverse situation. Hawley and

Dehaan (1996) research concluded that resilient families respond well to stress in unique ways

that vary in context, developmental level, and protective mechanism in the present and

continually over time. McCubbin and McCubbin (1996) agree that resilient families are those

that are able to illustrate positive patterns of functioning through stressful events as well as

recover and restore the well being of the family as a whole. Walsh (2003, 2012) recommends

observing family resilience as more than managing stress, maintaining normalcy, or simply

surviving. Boss (2011) adds, “Family resilience entails potential for personal and relational

transformation and growth that can be forged out of adversity” (as cited in Walsh, 2003, p.3).

Another significant viewpoint of family resilience is that families have the ability to bounce back

from hardship becoming strengthened with additional resources for future adverse events

(Walsh, 2006; Becvar, 2013).

Significance of Relationships

It is evident that a shift has occurred within family resilience research. This shift illustrates

that members’ of a family have great potential to being a resource during difficult times. Family

resilience is not individualized in nature as it once was. A family’s resilience is studied by

exploring the family as a functional unit (Walsh, 2003). It is essential to review the role of

relationships within the family unit as these connections assist in flourishing a family’s resilient

outlook during adversity while promoting a positive foundation of strength for future challenges

or crises.

Hartling’s (2008) work on hardship and relationships brings forward the idea that resilience

should be understood as, “A human capacity that can be developed and strengthened in all

people through relationships, specifically through relationships that foster growth” (p.52).

Hartling (2008) discusses the Relational-Cultural Theory (RCT) that believes relationships are a

significant source of strength highly associated with resiliency. The RCT suggests that social

contexts assist in opportunities to participate in relationships necessary for strengthening one’s

ability to be resilient” (Hartling, 2008, p.54). Simon et al. (2005) similarly shares that families

may be successful in overcoming life’s challenges when they maintain supportive and balanced

relationships with immediate and extended family through communication and time spent

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together. Evidence shows that even one supportive relationship can lead children and adults to

successful outcomes in the face of hardships (Hartling, 2008; Overholser & Fritz, 1991; Orbuch,

Parry, Chesler, Fritz, & Repetto, 2005).

As mentioned briefly, the quality of the relationship plays an important role when

examining resiliency. The RCT, “Emphasizes a two-way bi-directional nature of relationships,

that contain two-way growth-promoting qualities” (Hartling, 2008, p.58). In this type of

relationship, both parties engage in mutual understanding, relational responsiveness, mutual

empowerment, and authenticity (Hartling, 2008). This type of relationship fosters resilience more

sore than one-way unidirectional relationships (Hartling, 2008). The RCT explains, “It is the

quality of the connection and relationship that is most beneficial; social support that fosters

authentic connection can strengthen a person’s ability to respond when experiencing adversities”

(p.59). This is why attention is no longer placed on the significant relationship of the mother and

child in resiliency work. Family resilience must examine the quality of all relationships and their

contribution to the family unit as a whole. Walsh (2003) also notes that all relationships within

the family unit are examined and are significant in family resilience work.

Systems Theory of Family Resilience

The Systems Theory of Family Resilience (STFR) is helpful in understanding family

resilience as it, “Identifies key family processes that can reduce stress and vulnerability in high-

risk situations, fosters healing and growth out of crisis, and empowers families to overcome

adversity” (Walsh, 2003, p.6). Walsh (2003), Patterson (2002, 2012), & McCubbin, McCubbin,

Thompson, Han, and Allen (1997), believe that there are key processes that mediate the recovery

of all members and the family unit. Walsh (2003) shares, “These processes enable the family unit

to rally in times of crisis, to buffer stress, reduce the risk of dysfunction, and support optimal

adaptation” (p.3). Patterson (2012) imperatively adds that the processes that aid in a family’s

ability to recover in the long term not only originate from individual family members and the

family unit but from numerous community contexts as well.

In the systems theory of family resilience, Walsh (2003) stresses three key processes of

family resilience: family belief system, organizational patterns, and communication. Family

belief system refers to how a family views a crisis or challenge and how it leads to prospective

solutions, healing, and growth (Walsh, 2003). Other elements within a family’s belief system

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include positive outlook (master the possible, active initiative, perseverance, optimism), making

meaning of adversity (sense of coherence, normalize, explanatory attributes), and transcendence

and spirituality (larger values, faith, healing rituals, inspiration, learning) (Walsh, 2003).

Organizational patterns refer to encouraging resilience through flexibility (open to change),

connectedness (mutual support, collaboration), and social economic resources (social and

community networks, seek mentors) (Walsh 2003). The last key process, communication,

discusses how open communication is fostered within a family that focuses on clarity, open

emotional expression, and collaborative problem solving (Walsh, 2003).

Similarly, Patterson (2002, 2012) identifies the degree of cohesiveness and flexibility of the

family system as two central processes of successful family functioning under this theory.

Cohesiveness is often referred to as the balance between family separateness and connectedness

while flexibility is simply the degree of flexibility of the family system; both involve achieving

balance of the family unit (Patterson 2002). To further understand flexibility, McCubbin et al.

(1997) found that families often display flexibility when they are compelled to change their

family roles, rules, meanings, and lifestyles to achieve balance and to recover during hardship

and beyond. Patterson (2012) shares more about the processes of cohesiveness and flexibility,

“These patterns are most protective when there is family agreement about the balance between closeness and distance between change and stability - the quality of effective communication patters within a family is protective because it facilitates how families accomplish core functions” (p.357).

The literature has given examples as to how families engage in the key processes

mentioned above. Even though key processes were highlighted through the STFR, the ways in

which families participate and carry out these examples are unique and multifaceted. Black and

Lobo (2008), Leitz (2006), and McCubbin, et al. (1997), found that resilient families

demonstrated processes including family communication during normal life and stressful events,

a sense of spirituality, and maintaining an element of hope. The ability to give and receive social

support was commonly mentioned and highly associated with resilient families as well (Black &

Lobo, 2008; Leitz, 2006; McCubbin et al., 1997). Lastly, maintaining and engaging in routine

and family time such as holidays, weddings, dinnertime, and bedtime practises were noted in the

literature as essential processes of family resilience (Black & Lobo, 2008; Fise et al., 2002;

Leitz, 2006; McCubbin et al., 1997.

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Other research has highlighted the significance of family processes as well. For example,

Walsh (2003) shares that behaviours exhibiting the importance family time and relationships like

family meals, game night, meetings, trips, and traditions allow families to be confident in their

ability to withstand difficulties. Walsh (2003) explains that these behaviours have also been

reported to, “Nurture supportive relationships with one another which assist in improving

families abilities to grow, learn, and challenge each other in positive and growth-enhancing

ways” (as cited in Smith, Murphy, & Smith, 2005, p.429). Walsh (2003) and Patterson’s (2002)

discussions about STFR state that families need to strengthen and acknowledge key processes.

For example, “As families improve on clarifying information and encouraging open expression

of feelings, members are better able to make meaning of their situation and options, thereby

rekindling hope and facilitating more effective problem-solving (Walsh, 2003, p.14). Walsh

(2003) provides another example, “As families become more resourceful, risk and vulnerability

are reduced and they are better able to meet future challenge, thus, building resilience is also a

preventive measure” (p.14).

Walsh (2003) explains that family resilience frameworks such as STFR and the Resiliency

Model of Family Stress, Adjustment, and Adaptation (discussed further in a subsequent section

below) focus on family strength-orientated processes and capabilities rather than problem-

focused ideologies when stress is present in the lives of families. Importantly, family resiliency

frameworks were explored as they, “Assume that no single model fits all families or their

situations; functioning is assisted in contexts relative to families unique values, structure,

resources, and life challenges” (Walsh, 2003, p.6). Ungar’s (2011) ecological resilience

framework is also relevant as, “Many different starting points can lead to many different but

equally desirable ends by many different processes relevant to different ecologies” (p.7).

Family Resilience and Childhood Cancer

The family system’s perspective indicates that what affects one family member will affect

all family members. Therefore, when a family member is diagnosed with cancer, the whole

family is diagnosed with cancer. Researchers are beginning to understand that childhood cancer

is a severe trauma that impacts both the patient as an individual and the entire family unit. As

mentioned earlier, resilience studies often examine traumatic adversities such war, poverty, and

abuse. In recent studies, resilience has been observed in the Healthcare field. McCubbin, Balling,

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Possin, Frierdich, and Bryne (2002) explain that when a child is diagnosed with cancer, the

family unit is faced with many new stressors and demands. Some of these include: multiple

hospitalizations, extensive and painful treatments, alterations in the parent-child relationship,

disruption of sibling care, role changes, and fear of death (McCubbin et al., 2002; Banerjee et al.,

2011).

Experience of caregivers and siblings of children with childhood cancer

Parents of children with cancer are faced with issues such as advocating for their child,

understanding medical information, disclosure of medical information to their family and child,

and adjusting their parenting role in relation to nurses and other healthcare professionals. Ross

(1979) found that parents stress most about disciplining their sick child, disruption of normal

family routine, and feelings of guilt. Parents often place blame of their child’s illness on

themselves, and God (Ross, 1979). Similarly, Banerjee et al. (2011) explains that, “Parents of ill

children feel that they did not do something right at some point in their life and God was not

happy with them; cancer was a form of punishment and that God was sending a message”

(p.173).

Siblings face a number of adversities as well. As a family adapts to a diagnosis, the entire

family is forced to change their routines and daily life events. What was once normal is no

longer. Healthy siblings often feel a decrease in the amount of time their parents spend with them

(Prchal & Landolt, 2009). Houtzager, Grootenhuis, Caron, and Last, (2004) found that siblings

often experience unpleasant and conflicting emotions such as feelings of fear, isolation, jealousy

and guilt. Prchal and Landolt (2009) note that siblings of childhood cancer patients are at risk

for emotional, behavioural, and social issues. Likewise, Dixon-Woods, Young, and Heney

(2005) explain that siblings often display depression, anxiety, reduced peer activities, and even

developmental delays as a result of experiencing their sibling’s cancer.

There has been a small shift in the research from focusing on negative outcomes of

childhood cancer to positive ones. Mccubbin et al. (2002) mentions that identifying positive

predictors in childhood cancer can enhance coping and family relationships for the future.

Dixon-Woods et al. (2005) gives an example in which, “Many mothers activate a process in

constructing a new self-identity through adversity” (p.97). Other resiliency studies in relation to

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childhood cancer have found that when families are faced with cancer, most obtain stronger

martial ties and a stronger belief in faith (Sieminska & Greszta, 2008). Becvar (2000) considers

the following resilient qualities of families facing a childhood cancer:

“Intrinsic family characteristic (coherence, faith, positive outlook, mature thinking, and family-esteem), family responsiveness to stress (adaptability, desire to maintain normal states, patience for attainment of goals, ability to control stress, and readiness to accept critical situations), and family member orientation (flexibility in reorganizing the family, attachment among family members, open communication and emotional expression among family members, mutual understanding, and maintaining balance in family member demands)” (p.396-397).

Few studies have illustrated positive outcomes for siblings of childhood cancer. These

studies have reported that siblings often display maturation, understanding, compassion, and

closer family relationships (Sloper, 2000; Sargent et al., 1995). Sloper (2000) interviewed ninety-

four siblings of children with cancer and found that siblings gained closer family relationships,

increase in family and social activities, increase in independence, maturity, understanding, and

compassion. Harvermans and Eiser (1994) study found that although siblings’ lives had been

disrupted by their sibling’s illness, they became more empathic towards others and valued life

more. It should be noted that many studies on sibling adjustment have been reported by parents

(Sloper, 2000). This has influenced the need for self-reported perspectives by the sibling in the

current study.

Experience of children with childhood cancer

Children who have experienced cancer and hospitalization have been faced with numerous

challenges, events, and psychosocial disruption. It is reported that children with cancer

experience, “Loneliness and isolation, loss of childhood, physical discomfort and disability, fear,

and anger” (Moody, Meyer, Mancuso, Charlson & Robbin, 2006, p.960). Woodgate (2006) also

discovered that children could become very angry while dealing with their illness. Woodgate

(2006) gives an example from their study,

“It was reported by her mother that she had heard Jamie screaming to a friend on the phone stating, How would like to have to be sick, how would you like to be in the hospital and have to take all these medicines, how would like that to happen to you, how would you like to lose your hair?” (p.12).

20

Hymovich and Roehnert (1989) found that children who attend school during treatment

have low attendance and trouble concentrating in the classroom. Children can be distracted by

the emotional and physical distress they are dealing with. Fatigue is noted often in the literature

and established as both a physical and an emotional symptom (Woodgate, Degner, & Yanofsky,

2003). Dixon-Woods et al. (2005) notes, “Children experience physical fatigue- weak, sleepy,

and unable to play as well as emotional fatigue- altered mood, not wanting to be bothered, and

decrease in communication” (p.54). Another school-related issue children face is bullying.

Shockingly, Lahteemaki, Huostila, Kinkka, and Samli (2002) reported that cancer patients

experienced three times as much bullying as the healthy controls in their study.

Children are also faced with a large amount of anxiety, which stems from a fear of their

diagnosis, pain from procedures, and worrying about cancer reoccurrence (Dixon-Woods, 2005;

Boyd & Hunsberger, 1998). Hildenbrand, Clawson, Alderfer and Marsac (2011) also found pain

from procedures to be an evident stressor of the hospital environment. This study also discovered

that children perceive stress during hair loss, port access procedures, needles, overnight stays,

taking medicine, and from sleep difficulties (Hildenbrand, Clawson, Alderfer & Marsac, 2011).

Furthermore, Hildenbrand et al. (2011) explains that children stress about death, loss of control

and independence, lack of privacy, missing friends and family, and isolation. Boyd and

Hunsberger (1998) note that, “Some children may be reluctant to express their needs and feelings

in a strange environment like a hospital: they repress or camouflage their feelings and become

submissive and compliant in order to cope with anxiety and maintain control” (p. 330).

Childhood Cancer Survivorship

Survivorship is on the rise among Canadian children. The Childhood Cancer Canada

Foundation (2011) states that more than 70 percent of children diagnosed with cancer survive

and stay in remission. In the 1950’s, less than 10 percent of Canadian childhood cancer patients

could be cured (The Childhood Cancer Canada Foundation, 2011). Given these statistics, there

is a large growing population of children and families that have survived cancer, yet family

perception of survivorship remains largely unstudied. Specifically, ongoing research should be

conducted to better understand how resilient families flourish through survivorship.

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What is survivorship?

Cancer does not end at the conclusion of treatment. Families are faced with new stressors

and issues post treatment. Medical screening for reoccurrence and late effects of cancer requires

continual visits to the hospital and adjustment for all family members. With this, stress and

worry can often follow the survivor and their family around for a lifetime (Schwartz, Hobbie,

Constine, & Ruccione, 1994). Scwartz, Hobbie, Constine and Ruccinone (1994) recommend we

perceive cancer survivorship as, “A stage in a life-long chronic illness, rather then as an acute

illness that ends with a cure or some arbitrary end point” (p.295). The National Coalition for

Cancer Survivorship (NCCS) has constructed the following as components of survivorship that

was reviewed for this study:

“The act of living on, no matter what happens, beginning the moment the patient is told he or she has cancer and continuing for the rest of the patients life, extending far beyond the restrictions of time and treatment, a dynamic concept with no artificial boundaries, a process of ‘going through’ suggesting moving through phases, a continued or on-going process rather then a stage of survival, a healing process, not dependent on biology or medical outcomes but reflecting quality of life, and the experience of living, through, or beyond cancer” (NCCS, 2014).

It is important to note the dynamic nature of the definition of survivorship provided above.

At first assumption, survivorship may be regarded as a term relating to or used in conjunction

with remission. Remission being a declaration of no evidence of cancer or significantly less

amount of cancer in the body than what was found at diagnosis. For this study, survivorship is

not so much related to state of remission, but to the entire cancer experience and beyond.

Survivorship holds no boundaries. For this reason, some may believe that survivorship begins at

the start of chemotherapy treatment when remission is announced, or upon hearing their

diagnosis for the first time. Concentration should be placed on the idea that survivorship is an

ongoing process and is related to the entire journey of those experiencing cancer.

Survivorship and positive outcomes

Previous survivorship research was reviewed. Research examining psychosocial outcomes

of families experiencing childhood cancer survivorship has commonly focused on negative

effects of the experience (Meeske, Ruccione, Globe, & Stuber, 2001; Stuber, Meeske, Gonzalez,

Houskamp, & Pynoos, 1994). Zebrack (2012) shares that there is emerging research describing

the resiliency and positive life circumstances that are a result of cancer experience. Other

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scholars have also recognized a need for research that explores and understands children and

their families through the entire cancer experience. McCubbin, Balling, Possin, Frierdich and

Bryne (2002) explain that, “There is a need for a shift in the research, away from coping with

disease that was invariably fatal to gaining a better understanding of how the child, parents, and

the family unit adapt and recover after treatment and in long-term survival” (p.111). Woodgate

(2006) also identifies that children and families who survive cancer are faced with a new set of

challenges that must be understood so comprehensive and sensitive care can be provided to

them.

As noted, many studies investigated different issues in childhood cancer survivorship with

few exploring resilience and adaptation of families. Orbuch, Parry, Chesler, Fritz, and Repetto

(2005) did find that the quality of the relationships between the family unit can promote better

outcomes in survivorship. Specifically, the child in remission may be more resilient in their

survivorship as a result of their family’s positive relationships with one another (Orbuch et al.,

2005). Parental social support was also illustrated in the literature as a form of protection from

stress for the entire family. Overholser and Fritz (1991) explain, “Social support, in relation to

cancer and the availability of socially supportive relationships, has been associated with better

adjustment in parents and children who are in remission or in treatment for cancer” (p.71).

Similarly, Patterson, Holm, and Gurney (2004) conducted a qualitative study in which ninety-

two percent of parents mentioned that they had at least one community resource that they found

helpful in managing their child’s experiences. The study also noted that, “Effective parental

coping was found to protect children from feeling hopeless following treatment for cancer”

(p.391).

Particular strategies have been found effective for parents experiencing childhood cancer

survivorship. Overholser and Flitz (1991) have acknowledged, “The importance of information-

seeking strategies in providing parents with a sense of control over the illness, during treatment,

and post treatment which is helpful in overcoming feelings like passivity and helplessness that

parents commonly experience” (p.74). Overholser and Fritz (1991), also note, “Parental mastery

is significantly related to the long-term adjustment of both parents and the child” (p.82). They

concluded that, “Maintaining a sense of control affects how the family copes with the illness and

the overall long-term outcomes” (p.82).

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A father’s experience with childhood cancer survivorship was found to be less noted in the

literature than a mother’s experience. It is critical to understand fathers’ perspectives as they may

cope and adjust to the child’s illness and survivorship much differently than mothers. Hensler,

Katz, Wiener, Berkow, and Madan-Swain (2013) conducted a mixed methods study on fathers of

children who survived cancer and found that fathers had positive changes in themselves, a

deepened spiritual life, and growth in their relationships from experiencing their child’s cancer.

Specifically, fathers felt an increase connection with family members, an increased awareness of

the needs of others, and an increase of confidence for future adversity (Hensler, Katz, Wiener,

Berow, & Madan-Swain, 2013). In another study with eight fathers, it was discovered that they

needed three resources to support resilience: good social support, an ability to adjust to the

changes required by illness, and good communication skills (Brody & Simmons, 2007).

After reviewing the survivorship literature, it is interesting to note that most studies tend to

define and focus on survivorship in a more medical parameter. These studies explored questions

relating to survivorship during remission and or beyond (cancer free for five years or more). For

this study, participant survivorship criteria were loosely defined as not to place boundaries or

restrictions on an experience that is on going, dynamic, and extends beyond a specific moment in

time.

Theoretical Framework

The Resiliency Model of Family Stress, Adjustment, and Adaptation

Childhood cancer often brings forth a variety of stressors that families respond differently

to. Family units are unique. Members of one family unit live and function individually but also

parallel to one another. As noted from a family systems perspective, “What happens to one

family member affects the other members” (Patterson & Garwick, 1994, as cited in Patterson,

Holm, & Gurney, 2004, p.391). Essentially, the entire family is diagnosed with cancer.

Patterson and Garwick (1994) mention that, “Most studies of heath-related quality of life in

children who survive cancer do not account for the influences of family adjustment and

adaptation” (as cited in Patterson, Holm, & Gurney, 2004, p.391). The Resiliency Model of

Family Stress, Adjustment, and Adaption (RMFSAA) was reflected upon while creating this

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study as it aims to develop a deeper understanding of family adjustment and adaptation responses

to illness situations (McCubbin & McCubbin, 1987, 1989). This model is originally based on the

work of Reuben Hill’s family stress model (1949, 1958). The RMFSAA, “Provides a framework

that assists in determining whether or not an illness or stressor may cause family crisis”

(McCubbin & McCubbin, 1987, 1989). McCubbin and Mccubbin (1987, 1989), Hill

(1949,1958), and other family stress models focus on: “A stressor, the family’s efforts to use

resistance resources, the family’s appraisal of the situation, the family’s coping patterns, and

problem solving abilities to maintain function while dealing with a stressor” (as cited in

Danielson, Hamel-Bissell, & Winstead-Fry, 1993, p.22).

In the RMFSAA, there is additional emphasis placed on family adaptation (McCubbin &

McCubbin, 1987, 1989). McCubbin and McCubbin (1987,1988) note that, “Family adaptation

rather then adjustment is emphasized since it is often the most needed response to illness” (p.22).

The central ideology of this model becomes, “The outcome of family efforts to bring a new level

of balance, harmony, coherence, and functioning to a family crisis situation” (McCubbin &

Mccubbin, 1987, 1989, p. 35). For this reason, the adaptation phase of the model will be

explored in the study.

McCubbin and McCubbin’s (1987, 1989) RMFSAA is currently used in many healthcare

professions such as the field of Nursing. The model, “Guides healthcare professionals on

determining what the family types, capabilities, and strengths are needed, called on, or created to

manage illness in the family” (McCubbin & McCubbin, 1987, 1989, p. 22). The model is also

used to facilitate the creation of strategies and interventions by healthcare professionals while

evaluating family functioning under stress (McCubbin & Mccubbin, 1987, 1989). The

RMFSAA by McCubbin and McCubbin (1987,1989) is summarized and published by Danielson,

Hamel-Bissell, and Winstead-Fry, (1993). The work from this publication is discussed below and

cited from this source. 1

1 To current knowledge, a detailed summary of the RMFSAA by McCubbin and McCubbin (1987, 1989) has not

been published elsewhere. The cited page numbers in the theoretical framework section of the literature review refer to Danielson, Hamel-Bissell, and Windstead-Fry (1993).

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The Adjustment Phase

The adjustment phase is shaped by interactive components that may move a family towards

the adaptation phase of the model if bonadjustment is not reached. Often families can travel

through a situation with ease that may require little adjustments in the family system (p.31). This

positive outcome is called bonadjustment and refers to the established patterns of functioning

that are maintained by the family (p.26). In situations where the stressor is severe (e.g. chronic

illness), new patterns, priorities, roles, and goals are required. The stressor can bring forth large

and significant changes for the family that leads to maladjustment and a state of crisis (p.31). The

model also shares the difference between family stress and family crisis. Family crisis is a

continuous condition of disruptiveness, disorganization, or incapacitation in the family social

system where as family stress is a state of tension as a result of a demand-capability imbalance

on the family (p.31).

The components of the adjustment phase include: the stressor and its severity, family

vulnerability, family type, family resistance resources, family appraisal of the stress, family

problem solving and coping, and family bonadjustment/maladjustment. If maladjustment is

found, the family will need to restore stability, order, and a sense of coherence (p.31). This

transfers the family to the adaptation phase of the model.

The Adaptation Phase

As mentioned, concentration is placed on the adaptation phase of the model, as it is

common for an illness to become a crisis (maladjustment). When this occurs, families enter the

beginning of the adaptation phase. Emphasis is placed on the adaptation phase of this model, as a

crisis will usually present itself as a long-term issue. The adaption phase of the RMFSAA

assesses the following:

1. Additional life stressors and changes that may influence the family’s ability to achieve adaptation in the face of an illness. 2. The critical psychological, family, and social factors that families call on, are shaped by, and call into use in their effort to achieve satisfactory level of family adaptation. 3. The unique process of family appraisal that gives ‘meaning’ to changes in the family and facilitates coping and adaptation. 4. The processes families engage in to achieve satisfactory adaptation to an illness. 5. The outcome of these families efforts to achieve a satisfactory level of adaptation, which brings congruency between the families values, goals, rules, priorities, and expectations and the family’s new patterns of functioning (p.33).

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The model contains a number of interacting components in order to assess the adaptive processes

mentioned above. The components in the model include: pileup of demands, family types and

newly instituted patterns of functioning, family resources, social support, family appraisal,

problem solving and coping, and bonadaptation/maladaptation. Successful adaptation is referred

to as bonadaptation; this term will be used through out the study.

Bonadaptation is achieved when a family’s schema and patterns of functioning are

congruent, family members’ personal growth and development are supported, the family’s

integrity maintained, the family’s relationship with the community is mutually supportive, and

the family develops a shared sense of coherence (p.59). Synergism, interfacing, and compromise

must be present. Synergism refers to the family’s ability to work together as one unit. Interfacing

is the connection the family makes with the community, while compromise refers to the family’s

ability to understand that a family cannot always attain perfect functioning and thus realistic

appraisals need to be set (p.59).

Summary

The literature review has illustrated an overview of relevant themes relating to childhood

cancer, resilience and survivorship. It has provided a rationale for the study as well as a historical

overview of resiliency and family resilience in relation to illness. Chapter 2 discussed the

experience of childhood cancer among families that included both positive and negative

variables and outcomes. This allows for a deeper understanding of the issues families face during

treatment and remission as well as the shift research has taken in relation to childhood cancer. It

is evident that there is the growing population of children and families surviving their cancer.

Researching positive outcomes of survival and adaptation of families experiencing childhood

cancer is limited which has prompted the aims of the current study.

After reviewing the literature, it is important to note that that there is a concentration of

work that illustrates resilience findings as measurable and assessable. Some of the findings

presented in this literature review examine resilience as variables in a predictable deterministic

system. It was helpful to review a wide range of work to gain a deeper understanding of how the

resilience research has changed and developed over time. As discovered in later works of

scholars in this review, resilience and understanding families through the cancer experience is a

dynamic process of adaptation and growth. This process of resilience and adaptation is viewed as

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complex and is unique to each individual, family, and community. It is to understand change in a

multifarious system. Through this study, this complexity is persevered while contributing holistic

analysis to the academic literature.

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Chapter 3 Methodology

This chapter will focus on the methodology selected for the study. The purpose of this

qualitative case study is to describe the experiences of a family who is living through and

surviving a paediatric cancer. The following methods were utilized to answer the research

question: What are the accounts of members of a family in dealing with childhood cancer and

life in survivorship?

Qualitative Research Design

A qualitative approach was selected to explore and answer the proposed research question.

Creswell (2012) defines qualitative research as, “An inquiry approach useful for exploring and

understanding a central phenomenon” (p.626). Qualitative research allows participants to share

their stories and have their voices heard while minimizing power issues that often exist between

the researcher and participant (Creswell, 2007). Adding to this, Hatch (2002) shares that,

“Qualitative work starts with the assumption that social settings are unique, dynamic and

complex- its methods provide ways in which the setting can be systematically examined as a

whole” (p.9). Qualitative literature illustrates uniqueness in its methods that respects research

questions regarding complex systems and processes, such as resilience in this study.

The rare stories and detailed accounts of perspective are often missing depth when using

quantitative measures. Human interaction and behaviour can be observed and measured

quantitatively though it often lacks understanding of the ‘why’ behind what is being observed.

Since these issues exist, qualitative methods are selected due to the fact that one of its major

strengths is that, “It seeks to understand the world from the perspectives of those living in

it…individuals act on the world based, not on some supposed objective reality, but on their

perceptions of reality that surround them” (Hatch, 2002, p.7). As a result of this subjective

reality, “We cannot separate what people say from the context in which they say it” (Creswell,

2007, p.40).

Ungar (2003) confirms the significance of qualitative methods in resilience research:

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“Qualitative methods are shown to be particularly relevant to the study of resilience in five ways. It is well suited to the discovery of unnamed process; they study phenomenon in a very specific context, their trustworthiness strengthened by the thickness of the description of that context; they elicit and add power to minority ‘voices’ which account for unique localized definition of positive outcomes; they promote tolerance for these localized constructions by avoiding generalization in favour of transferability; and they require researchers to account for the bias inherent in their social location” (p.86).

Ungar’s (2003) remarks embodies the necessary elements that are needed when reflecting upon

resilience and families for this study.

Case Study

The single case study research design involves the study of a single unit such as a person,

family, group, or community. The current study focuses on one family consisting of three

participants. Yin (1989) defines the case study as, “An investigation to retain the holistic and

meaningful characteristics of real-life events” (p.14). Further, “A case study is an empirical

inquiry that investigates a contemporary phenomenon within its real-life context; when the

boundaries between phenomenon and context are not clearly evident and in which multiple

courses of evidence are used” (p.23). Flyvberg (2011) also shares that the case study understands

context and process. The case study method was naturally selected given that it can account for

and appreciate resilience as a process the family travels through which is complex and unique in

its context.

Schutlz and Schutlz (1992) share that much of what we know today about certain theories

came out of in-depth single case study designs. For example, Pavlov conducted experiments of a

single subject and small groups of subjects to make classic discoveries in the study of perception,

learning, and memory (Schutlz & Schultz, 1992; as cited in Knock, Michel, & Photos, 2007,

p.337). Flyvberg (2011) agrees that, “Much of what we know about the empirical world has been

produced by case study research, and many of the most treasured classics in each discipline are

case studies (p.302). He also mentions the work of Kuper and Kuper (1985) quoting, “More

discoveries have arisen from intense observation [of individual cases] than from statistics applied

to large groups” (p.305). Knock, Michel, and Photos (2011) explain that case studies are also

useful for clinicians as they provide, “An efficient and flexible tool in the assessment and

treatment development and the evaluation process” (p.339). The selection of the case study

method was vital as my study provides implications for healthcare professionals.

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It was essential to select a method that allowed me to draw valid inferences about the

population I was studying. Fortunately, Flyvberg (2011) shares that, “The quantitative researcher

cannot get as close to those under study as the case study researcher can and therefore is less

likely to be corrected by the study’s participant” (p. 310). It is in this method that the researcher

can confirm and validate participant dialogue that has taken place during data collection and

continually throughout the final stages of the research. As a matter of fact, case studies,

“Account for the mutual knowledge by the researcher and the participants that reconstitutes the

social world” (Flyvberg, 2011, p. 310). As it will be discussed further in this chapter, the family

and I will create the findings presented later in the study.

It should also be noted that, “Case studies contain no greater bias toward verification of the

researcher’s preconceived notions than any other methods of inquiry” (Flyvberg, 2011, p. 311).

As mentioned in Chapter 1, an outlet exists in this type of research that allows for a discussion of

the researcher’s biases leading to a more holistic outcome and truth about the phenomena being

studied. As the reader, you may have your own preconceptions of cancer resulting from personal

experience or from other narratives. I invite you discover your own truth and meaning of the case

study presented here. This methodology was also selected as one of its goals is, “Not to make the

case study be all things to all people but to allow the study to be different things to different

people” (Flyvberg, 2011, p. 312).

Rightfully, the case study method contains just as much precision as alternative methods as

it can close in on real life events as they develop (Flyvberg, 2011). Given the uniqueness of the

population of interest, this method has allowed for generalizing of specially selected subgroups

from within the population (Flyvberg, 2011). As a matter of fact, Gerring (2004) argues to all

that, “The case study is best defined by an intensive study of a single unit with an aim to

generalize across a larger set of units” (p.341). Likewise, case studies provide reliable

information about the broader class and that the selection of this method adds to the

generalizability of case study designs and therefore to scientific progress (Flyvberg, 2011). The

term science means ‘to gain knowledge’ and formal generalization is actually only one-way to

accrue knowledge (Flyvberg, 2011). An advantage to the case study method is that, “Knowledge

may be transferable even when its intent is to not formally generalize. A purely descriptive,

phenomenological case study without intention to generalize is also of value and has often

helped cut a path toward scientific innovation” (Flyvberg, 2011, p.305). Unfortunately, “The

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force of example and transferability are underestimated in all types of research” which is another

reason my research question led me to select the case study methodology (Flyvberg, 2011,

p.305). The discoveries of the current study can exemplify the case study’s availability to

transfer knowledge to larger units while contributing to scientific progress. Since case studies are

exploratory in nature, they often lead the way for path-breaking research as well (Gerring, 2004).

Lastly, I was naturally drawn to this method to explore my research question as case studies

contain an element of self-learning that is required to produce high quality research (Flyvber,

2011). Flyvberg (2011) explains further,

“If one assumes that research, like other learning processes, can be described by the phenomenology for human learning, it then becomes clear that the most advanced form of understanding is achieved when researchers lace themselves within the context being studied. Only in this way can researchers understand the viewpoints and behaviours that characterize participants” (p.310).

In short, a single case study was selected as it allowed for a more in-depth, detailed, rich, and

complete account of the phenomena being studied (Flyvbjerg, 2011). The population being

studied is rare and the single case study method supports this as it can produce critical

information about the phenomena of interest (Nock, Michel, & Photos, 2007). The single case

study was the most favourable method to illustrate what I have learned from my time with the

family over several months.

The Participants

This case study will examine one family living in the Greater Toronto Area who is

experiencing childhood cancer survivorship. The participants were selected using a purposive

sampling technique. This technique was utilized as it allows researchers to select a sample

purposefully and with intent (Suen, Huang, & Lee, 2014). Given the in-depth nature of the case

study, this sampling technique allows for careful selection of participants so rich and valuable

information may flourish within the study (Suen, Haung, & Lee, 2014). A family was selected

for the study using the online social network site Facebook (See Appendix C for Recruitment

Tool).

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Inclusion and exclusion criteria

Inclusion criteria consisted of either a blended or intact family with one or two

parents/caregivers living in the home. The family must have a child who had cancer and is

currently in any stage of remission. The child may be between the ages of six and thirteen. The

child may or may not have siblings, although siblings are preferred. Other immediate family

members may participate in the interviews and discussion. Since every family structure is

different, the parents and child will decide if any other family members should be interviewed as

part of the study. These family members would have played a role during the cancer treatment

and continually through survivorship. Please see below for email response to families (See

Appendix C for further information on Inclusion and Exclusion Criteria).

Email Response:

Hello,

Thank you for your interest in my study. I am a graduate student at the University of Toronto in the

department of Developmental Psychology and Education. I am interested in inviting a family whose child is in

remission to share their story and experiences with me. I hope to learn about family resilience and the experiences

of childhood cancer survivorship. I would love the opportunity to discuss your experiences with you and your family

members.

I am looking for a child between the ages of six and thirteen who has been in remission between one and five

years. In order to participate, your child must understand that they have been treated for cancer and that their

siblings understand this as well. If you have any other questions or are interested please do not hesitate in

contacting me. If you like, we can set up a time to discuss the study further. Thank you so much!

Lisa-Marie Bianchi

Data Collection

Interview

Before the initiation of data collection, the family received consent/assent forms (See

Appendix D and E for Consent/Assent Forms). These forms addressed their role in the study,

risks and benefits, reimbursement, and their right to confidentiality. They were given time to

review the forms and were able to contact myself in person, by phone, or email with questions or

concerns about the research. Semi-structured interviews and artifacts were used to collect data

for the study. The semi-structured interviews were based on themes relevant to childhood cancer,

survivorship and resilience instead of structured predetermined questions (See Appendix B for

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Interview Guide). Semi-structured interviews were utilized to ensure the family members had the

opportunity to relay information that was significant to them. This information may have never

been disclosed if structured interviews were utilized. Yin (1989) believes that interviews should

consist of fluidity more so than rigidity. The interview process was regarded as a conversation

rather than an interview in order to establish comfort and trust between the family and I. This

strategy promoted a decrease of power differential between researcher and participant. After

obtaining consent/assent, a number of phone conversations occurred between the mother of the

family and myself. It was through this medium where information about the family background

was discussed and questions were answered with regard to the research.

Interviews were conducted with each member of the immediate family. The family was

told that the interviews could take place within their community or home. The family invited me

into their home on five occasions. The interviews were conducted one-on-one and also with

other family members present in the room. Discussions typically lasted between one and three

hours in length.

Artifacts

All family members were invited to share any documents or artifacts that were relevant to

their childhood cancer experience. This took place after the initial interviews in order to give the

family members time to gather relevant documents. I anticipated that the documents might

include pictures, letters, toys, crafts, or hospital memorabilia. Conversations about these items

took take place and if consent was given, I obtained images of the documents. It is important to

note that the family members could consent to photographing all items, some items, or no items

at all. The family also gave consent to audio record conversations about their documents.

Analyzing Data

Each visit and discussion with the family was audio recorded and transcribed within the

same week using Microsoft Word. The data was analyzed using a general inductive approach.

This approach presents findings that have transpired through dominant and frequent themes in

the raw data collected (Thomas, 2006). After the data was transcribed, I read through the text

with no particular goal in mind. I wanted to become familiar with the data before I placed my

own interpretive text on it. After this, I continually read through the data multiple times

34

highlighting and adding remarks in the margins. I searched for reoccurring and significant events

that were emphasized by the family and the unique experiences of each family member. This

process was repeated after each interview was transcribed. The goal was to capture their story as

individual family members and as a whole family. In all, I wanted my raw data to transform into

a general theory about their experiences (Thomas, 2006). In the final stages on my analysis, I

reflected upon the RMFSAA to assist in understanding how family stress related to childhood

cancer could impact a family system. A supplemental goal was to provide a recommendation

when using this framework in childhood cancer circumstances. This was not an intentional goal

but was one that emerged during the analysis and writing stage of the research.

The artifacts were analyzed with the same general inductive approach as the interviews.

Conversation flourished as family members shared and discussed various documents with me.

These moments were audio recorded and transcribed within a week. The use of artifacts in my

study was regarded as a supplemental tool as frequent themes were noted in relation to the other

interview data. The family was able to tell their story through this additional medium while I was

able to develop a better understanding of their unique experiences.

Given the biases described in Chapter 1, it was vital to produce findings that were as

trustworthy as possible. Before the data collection, I asked the family members if they would be

willing to review and discuss my analyses. As I began to write their story and summarize their

accounts, the family members were given complete control and freedom to work alongside

myself to ensure the accounts illustrated were accurate. This process allowed the family to

confirm that what I presented from our discussions would reflect their thoughts and feelings. I

wanted the story that is placed before you to mirror their words and their unique perspectives.

The family members were not viewed as participants but rather as active researchers through the

entire research process. I believe this approached aided in the credibility of the findings in my

study.

As the study continues…

The story presented in Chapter 4 is organized into four sections that developed as themes

from the family’s discussion of their experiences: background (diagnosis), process, resources,

and outcome. These themes were reflective of Volpe (2002) BRIO Case Study Framework. This

framework provides a way of organizing descriptive accounts of programs in case study

35

research. Programs are explored through four areas: Background, Resources, Implementation,

and Outcome. My study used the BRIO Case Study Model while changing the area names to

better suit the experiences of my participants. Implementation was changed to process as the

family described the progression of the cancer experience and related events.

The following chapter illustrates the story of Addie, Nathan, and Noah. I have had the

pleasure of interacting with them over several months. During this time I was able to immerse

myself within their home and family. Below, they share their story of childhood cancer and life

in remission.

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Chapter 4 Their Story

Family Background

{Family Dynamics, Taco Tuesday’s, Summer Travels}

Nathan is a 13-year-old grade seven student who is eagerly waiting to start high school.

Nathan expresses a passion for playing football and following the National Football League. He

has been playing in a league for four years outside of school. At the time of his diagnosis he was

playing the position of quarterback. The circumstances being what they were, Nathan was

required to take a break from playing on his team. Nathan also enjoyed playing on the volleyball

team at school and will be trying out for the flag football team in the following year. Drawing

has always been a hobby for Nathan as well. In his spare time, Nathan and his friends enjoy

exploring the outdoors. Together they attend local hockey games in their community, go ice-

skating, and play football. As Nathan puts it, “You know, just hangout.”

Noah is Nathan’s 16-year-old brother. There are no other siblings in the immediate

family. Noah is currently in grade 10 and works a part-time job where he washes dishes one to

two times a week at a restaurant near his house. He just received his driver’s learning permit,

which has brought along a new set of responsibilities for him. Noah mentioned that aside from

his new responsibilities, he is enjoying an increased sense of freedom. In their home, Noah’s

bedroom was recently relocated to the basement. His bedroom also contains a fridge and small

kitchen. “I like that I can have some privacy,” said Noah. “I love my bedroom in the basement

and it’s pretty cool that I get to have that.”

In a separate visit, Addie (Nathan and Noah’s mother) discussed some of Noah’s new

responsibilities, “He is older now and I want to give him some privacy, a space that he has to

take care of.” She continued, “I want him to understand that even though he is older with more

freedom, it comes along with new responsibilities, especially driving. We have been talking

about that.” When asked what Noah enjoys doing in his free time he mentioned playing catch

outside and board games with friends. He also enjoys taking long walks with his friends or the

family dogs. He explained, “Sometimes I can be gone for hours just walking. I like being outside

with nature and that is when I do my thinking.”

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Addie is the biological mother of Nathan and Noah. She is 43 years old and works at a

linguistics company. She has an Early Childhood Education diploma but has chosen not to work

in the field for some time now. Addie is a single mother who enjoys spending time with her

boys. She finds great joy in planning vacations and outings for her family. Addie’s relationship

with her parents has always been positive and supportive. She clarified this by sharing, “My

relationship with them has always been strong, even before the diagnosis. They are my rock,

always.”

As a family…

Addie, Nathan, and Noah live together with their two dogs and three kittens. Addie was

married to their father for nine years. When they divorced, Nathan was one and a half years old

and Noah was five years old. Noah and Nathan currently see their father once a week and every

other weekend. In the summer, the boys spend a full three weeks in their father’s care. Holidays

are divided between both their mother and father’s home.

At Addie’s house, they enjoy going to the movies together but say they have more fun

watching movies at home. They often go to Addie’s parents’ house for dinners and to go

swimming in their indoor pool. During one visit, Nathan shared funny moments they have had

playing their weekly card game UNO. Addie, Nathan, and Noah enjoy baking together, though

Addie and Nathan seem to do this together more often than Noah. Noah mentioned, “It’s more of

their thing they do together. I don’t like it as much as they do.” Tuesday taco night is definitely a

family ritual! Addie explained, “I usually make the tacos but sometimes the boys help. Every

Tuesday, without a doubt, we have tacos. It’s fun.” Aside from this, the family eats dinner

together at the kitchen table about ninety percent of the time. Addie considers this a family rule

in their household, “It’s important to me and the kids like it.”

As a family (alongside Addie’s parents) they celebrate birthdays and different occasions

with large family dinners. In the summertime, their family travels to North Carolina. This is

something they have been doing since the boys were younger. They also plan a family camping

trip every year. This year Addie’s parents are joining them. Noah explained, “We are renting a

house because the whole family is coming, it’s extra special this year.” In between these trips,

Addie, Nathan, and Noah spend some Saturdays at the local conservation area where they swim,

have picnics, and enjoy the sun as a family.

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During one visit we discussed the family’s religion. Addie shared that she is not religious

but that she welcomed whatever religion the boys wanted to believe in. Both Nathan and Noah

attended a Catholic elementary school. Noah chose not to continue Catholic school during his

high school years. He is attending a public high school. Nathan is still in elementary school and

will be making that choice shortly. Addie and Nathan stated that they are agnostic.

Other family rules include being courteous to one another. Addie described the reality of

this, “Of course I yell at the kids sometimes. I am a Mom. They yell back and tell me they hate

me but it’s all apart of it.” We also discussed rules about keeping the house clean. Everyone

understands that they must pick up after themselves and keep their spaces clean. Nathan shared

that he is not as good as Noah in this regard.

When asked about family stresses and difficult events before the diagnosis occurred,

Addie and Nathan felt there were no major concerns. Nathan replied saying he has a good life

and that football had been keeping him busy. In multiple conversations he mentioned how

important football is to him and how much he enjoyed playing quarterback on the team. Addie

mentioned that her and the boys’ father got along well, with only small disagreements occurring

from time to time. The disagreements between Addie and her ex-husband did not affect the boys’

relationship with their father or family dynamics within either household. Addie also stated, “I

get along fine with his new wife.” For Noah, he felt like his parents did fight quite a bit but most

were small disagreements that were usually resolved.

Diagnosis

{…We got the call right after. It was the worst thing I’ve ever had to say}

-Addie

On a summer day in June 2012, Addie, Nathan, and Noah were participating in a walk for

colon cancer. During the walk Nathan expressed feelings of being ill. Addie suggested, “He is

that type of kid, ‘Oh I am so sick I want to sit down’ all the time. He does that.” She continued,

“I was like ‘Oh whatever just go sit down.’ I ended up being mad at him because he kept

complaining.” Nathan’s illness persisted in the days following the colon cancer walk and Addie

began to notice that he was pale and sick looking. After four days, she had had enough and was

starting to worry. He was not getting better. She described her feelings as, “I had a gut feeling, as

39

his mother, that something was wrong.” He had all the symptoms of the flu but it seemed

strange. I took him to the doctor.” Their family doctor predicted Mono as the diagnosis but

Nathan’s spleen was enlarged. He ordered blood work to confirm.

The following day Addie and Nathan were at their local McDonalds having a meal

together when Addie said to Nathan, “See aren’t you glad there isn’t anything wrong with you?”

Addie explained, “We got the call right after that. It was the worst thing I’ve ever said.” To this

day Nathan will still bring up the McDonalds conversation when worried about his blood work

and health. Addie shared during one visit, “He will ask how his blood work is and I’ll say it’s

good you’re fine, but he will say that’s what you said when we went to McDonalds.”

When Addie received the call about his blood work, all she could recall were the words,

“Get him to the hospital, it’s in his blood.” It was at that moment that the word cancer fluttered

across her mind. A few more tests at their local hospital confirmed that it was Leukemia and

further testing at the downtown children’s hospital would discover the type of Leukemia. The

local hospital made arrangements to transport Addie and Nathan to the downtown hospital an

hour away. At this time, Noah stayed with Addie’s parents.

Together, Addie and Nathan described their experience in the ambulance on their way to

the downtown children’s hospital. While riding in the ambulance, Addie had placed her Coca-

Cola drink on a shelf where Nathan was laying on a gurney. They hit a bump in the road as

Addie recalled, “Of course it was open and when we hit the bump my drink spilled everywhere,

including my purse.” Nathan and Addie both described how funny it was. Addie shared, “It was

a sticky mess but it made Nathan laugh and that’s all that mattered.”

The ordeal became more of a laughing matter when Addie went to retrieve her purse and

hit her head on the gurney. Addie remembered, “My glasses flew off to the other side of the

ambulance.” Nathan shared, “I laughed so hard but then my Mom almost threw up because of

motion sickness.” The paramedics ended up turning on the sirens for Addie so they could get her

to the hospital faster. Addie recalled, “Ugh did we ever laugh. It was pretty funny and you know

what, it took our minds off everything for a second.”

Multiple body scans as well as bone marrow and bone tests were conducted upon their

arrival. Nathan’s scrotum was checked for cancer as well since blood cancers can be complicated

40

to treat for boys. Nathan endured his first lumbar puncture during this time. In the end, the family

received a final diagnosis of Acute Lymphoblastic Leukemia (ALL). At the time of the

diagnosis, Nathan’s blood was ninety seven percent leukemic and doctors mentioned that he

would have died if Addie had not taken him to the doctor when she did. Addie exclaimed, “It

was very overwhelming to hear all that, sometimes I think what if [pause] you know?” Addie

and Nathan shared their knowledge with me: ALL is a fast growing type of leukemic cancer;

however, the cure rate is ninety five percent. Nathan recalled, “They kept saying it’s the good

cancer to have if you ever get childhood cancer.” Addie added, “His scrotum was clean and the

lumbar puncture showed his spine and brain were clean. Gosh we were really lucky!”

Nathan’s treatment started two days after the doctors confirmed the final diagnosis.

Nathan recalled a Friday morning holding significance in his mind as to when his treatment

started. “The first week was a complete whirlwind”, Addie described. It was here in the

interview that Addie mentioned that she could go on about this and to stop her at any point. I

invited her to continue her story. Each day in the hospital Nathan endured blood work that

examined his blood chemistry and counts as he went through treatment. Nathan began

chemotherapy treatment that was administered in the hospital almost daily. In total, Nathan and

Addie had spent nearly the entire summer at the children’s hospital. During this time, Nathan

was ten years old, Noah was thirteen years old and Addie was forty years old.

He went into remission after approximately thirty days of intense treatment. He was

diagnosed June 8, 2012 and went into remission approximately July 16, 2012. Nathan missed

the beginning of a new school year. He was not able to go back until March, which meant he

missed the first seven months of school. Following the news that Nathan was in remission, he

entered into a phase of treatment called maintenance. This period of time is longer for boys than

it is for girls as boys have a higher chance of relapse. Maintenance involves continual at home

medication and outpatient procedures four times a year. The family mentioned that this phase is

purely a preventive measure.

Process

{I was so nervous about the diagnosis. Every time the phone rang I thought someone was calling to tell me I was going to die… Once it all hit me I really began to understand}

-Nathan

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During the first weekend in the hospital, Addie and Nathan learned that there were

sixteen newly diagnosed cases of leukemia on their floor. Addie recalled the first two weeks as

being, “So overwhelming, it was information overload.” Addie confirmed that this feeling

subsided as the days went on. Nathan openly reflected about his feelings during many of our

visits, “I didn’t really understand it all for the first month. Then it kind of hit me. I got really

nervous all the time and stuff.” Addie mentioned on several occasions that someone needed to be

with Nathan at all times in the hospital. He found that interacting with a therapist at the hospital

helped relieve his anxiety. Nathan communicated that understanding the relatively good survival

rates and aspects of the illness itself helped him feel safe and supported during treatment. He

added, “I tried to stay positive no matter what.” Addie also mentioned, “Nathan never had the ‘I

feel sorry for myself’ attitude.”

At the beginning of Nathan’s treatment, Addie took a month vacation from work. She

clarified that it was all her vacation hours for that year as well as allotted sick days. Addie was

concerned with what her workplace thought of all the time off. Addie noted that initially it was

roughly five weeks in total that she took off. Some of their time was spent at the local family

housing beside the hospital. This centre is a ‘home away from home’ for parents and children

who are being treated at the downtown children’s hospital. Here, families have access to

kitchens, family rooms, and private bedrooms. Typically the house accommodates families who

live a substantial distance from the hospital.

During the hospital stay and treatment, Addie’s parents, Nathan’s father, and at times his

father’s parents cared for Noah. Addie explained that her and Nathan barely saw Noah during the

initial chaotic weeks. During multiple visits with Nathan, he expressed that he felt sorry for his

brother as attention was placed on himself and his illness. In one visit in particular, Nathan

shared,

“I barely saw him because he was at home. I feel kind of bad for him because he was always by himself during the summer. Everyone was focused on me. He was the odd one out.”

Noah’s perspective was slightly different. Noah felt that for the most part his daily

schedule was quite normal besides the change of caretakers. Noah did visit his mother and

brother in the hospital a few times. These visits were kept to a minimum, as there was worry for

Nathan’s weakened immune system. In Noah’s perspective,

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“I am not an attention seeker so it’s not bad. But I think if it was the other way around and I was sick, he would have gotten more attention than I did when he was sick. Some people need more attention. I think it was helpful for my Mom that I was like that. I am independent and can be alone. She could concentrate on Nathan.”

Noah tried to help out as much as he could. He explained, “I would try to calm her down

and make her feel good, cheer her up if she was down.” Noah also explained that he took

responsibility over Nathan’s chores in their household for quite some time. He mentioned that he

did not mind the extra chores. He thought that by doing more around the house he was able to

help Nathan, as his mother would have more time to care for him.

Addie and the boys’ father had a few disagreements during Nathan’s treatments. Addie

recalled a conversation with him at the beginning of Nathan’s diagnosis, “He would say ‘I would

have hired somebody to take care of him’, like who does or says that? I needed help sometimes

or you know, a break, and he would make me feel guilty.” When asked what Nathan and Noah’s

relationship was like with their Dad, Addie described him as being supportive of the boys. In the

beginning he did take turns staying in the hospital with Nathan. This allowed Addie to go home

and shower and get a good night’s sleep. This was short lived in Addie’s eyes. She clarified, “His

wife was difficult and jealous of the time he was spending with our son. She would complain

like, ‘Oh poor me, I am all alone.’ He stopped coming around the hospital as much.” She

continued, “I also think he may not have been able to handle it all and that’s why he would want

to hire someone else to be with him but that’s ridiculous.” At one point, Addie had thoughts of

attempting to gain full custody of the children. This came about after learning of the

inappropriate conversations between his wife and Nathan. She described one incident,

“Once she said ‘Oh look at you Nathan, you have cancer boo hoo waa waa.’ I called her up and said ‘You better not say anything like that to my son again or else’ kind of thing.”

Aside from this, Addie spoke highly of her ex husband. He did illustrate support to

Nathan that she appreciated. Even though their father was supportive, Addie was the main

caretaker of Nathan. She almost never left the hospital. In many visits, Addie stressed, “It was

me alone, I basically took care of him by myself.” Nathan felt the stress of the disagreements that

were occurring between his Mom and Dad. He explained, “There was a lot of fighting going on

when I was first diagnosed, like who would go to the hospital and stuff. It was a bit stressful. But

we just dealt with it.”

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During a conversation with Noah, he felt that Nathan was angry at everything when he

was first diagnosed. It seemed like he took his anger out on Addie. Perhaps this was because they

were together all day and night during his treatment. Noah mentioned,

“My Mom had to change her entire schedule and I guess he didn’t give her any credit for doing that. She changed her whole life for him and I feel like she didn’t get any recognition. I could tell it made her a little upset.”

Addie expressed how hard and exhausting it was throughout the experience. She stated, “I would

try to work at the hospital. I brought my laptop, took care of Nathan, chemo, and everything.

Worked all hours of the night. It was so hard.” Nathan found comfort in his hospital room; not

wanting to leave too often. He would lay in bed or watch television which also gave Addie

additional time to do her work. Although this was a good opportunity for her to get some work

done, she did, at times, feel confined in the hospital.

A pivotal moment for the family was when Nathan’s hair started falling out. Addie and

Noah both agreed that the hair loss symbolized how serious the cancer and illness was in their

lives. Addie decided to hire a hair artist to come to the hospital for Nathan. He wanted to shave a

picture in his hair, as he knew he would have to shave it all off shortly. This technique, although

usually expensive, was given for free by the artist. Nathan decided to shave the logo of his

favourite sports team in his hair, the Buffalo Bills.

Another memorable moment for the family was when Nathan made his wish. All the

children at the downtown children’s hospital receive a wish. Nathan’s wish was to have a

football themed party with all of his friends. The hospital made his wish come true and held a

huge party in the auditorium of the hospital for his whole family and all his friends. Nathan

recalled having video games and big television screens to play on. There was a special guest

from a popular national sports network who stopped by the party as well. Addie explained, “That

party just made all the difference for us.” As Nathan’s hair continued to fall out, he finally came

to the decision that he would now have to shave it. Addie’s father shaved his head in solidarity

with Nathan. Addie wanted to shave hers as well but Nathan would not let her. Addie found this

incredibility sweet of her son.

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During the transition home, Addie was continually finding it difficult to work. Nathan

still had many doctor’s appointments and treatments that required full day trips downtown. She

had to have a conversation with her boss about it all. She explained,

“I told my boss either I work at home or I quit. I can’t do this and do all the appointments. I got to work from home for a year and a half. I was so lucky they were supportive. They basically said keep track of your hours, do what you can. They were awesome.”

Upon arriving home, normal family routines and rituals were interrupted. Addie voiced that it

was hard for her to schedule family vacations. Continual chemotherapy and doctor’s

appointments were scattered across her agenda. Noah felt a change in the home dynamics when

Addie and Nathan returned. He recalled having to get used to all the doctor’s appointments and

his Mom being home from work. He stated, “It wasn’t bad or anything, just new and different.”

Addie worked and took care of her boys at home. This came with some challenges.

Nathan continued to go through phases where, when the phone would ring, he would cry and

begin to throw up because he thought someone from the hospital was calling to tell him he was

dying. He was still nervous and anxious during his transition at home and Addie had to stay by

his side much of the time. Nathan slept with Addie the first year after arriving home. Nathan

shared one moment with me, “Once I woke up and was calling for someone but no one heard me.

I thought it was because I wasn’t alive anymore.” He recalled it being silly now when he thought

about it. Addie did check on Nathan in his room often. She wanted to give him a feeling of trust,

security, and safety, as they were no longer in the hospital environment.

No longer being in the comfort and safety of the hospital brought on its own unique

challenges. During the first months home, Nathan’s immune system was still cautiously low. He

could not be around anyone that was sick; despite the fact that everyone wanted to see him.

Addie and Noah took extra precaution within the home and with food preparation. Addie stated,

“I didn’t want him around anyone that was remotely sick. The first year we were like that.” Noah

mentioned, “ There must have been hand sanitizer in every corner of the house.” Nathan also

remembered, “My Mom would always be asking ‘Do you have a cough? Do you have a cold?’ to

people that came over. It was kind of funny.” Food preparation took longer as Addie ensured she

washed fruits and vegetables multiple times before giving them to Nathan. The family informed

me that this behaviour decreased as Nathan got better.

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Resources

{There have been people that have added me to Facebook just so they can talk to me...because I know} -Addie

Community resources in hospital

Addie, Nathan and Noah utilized a variety of different resources during Nathan’s

treatment and continually through survivorship today. The children’s hospital Nathan received

his treatment at was discussed as a significant resource during our interviews. Upon arriving at

the hospital, different groups and activities were brought to Addie and Nathan’s attention. Addie

shared that she went to most of the group activities in the hospital that were geared toward

adults. She explained, “The hospital groups were really good. I liked them. There was something

for everyone: adults, siblings, and kids.” Nathan explained that they always had toys and games

to give out to the children. He mentioned, “We got to keep the toys. It was really nice and it

made me feel pretty good.” Addie added, “Most toys were donated but lots were also brand new.

That stuff makes all the difference for those kids you know?”

Once Addie and Nathan transitioned back to their home, Addie continued to go

downtown to participate in meetings. She shared,

“I went in on my own when I was back home sometimes. It is pretty far so I couldn’t always go but I felt like it was important for me to talk about my story and listen to others. Those people understood me so much”

Addie shared on numerous occasions how much the groups at the downtown children’s

hospital helped her cope with everything that was happening to Nathan and their family. Addie

shared, “The groups helped me cope with it all and listening to other people’s stories made me

feel less alone. I liked being in this support system with everyone else.” She mentioned once

that she spoke with Nathan and Noah’s father about going to the support groups. She explained

how helpful they were for her. She suggested that he could go with her or alone if he preferred.

He did not attend any. Addie hinted at a reason, “I don’t think that was smart but maybe

everyone heals differently. Maybe he was embarrassed to go.” Noah did not attend any groups

either. Addie did offer to arrange for him to participate in groups that were within their

community. During one of our interviews, Noah explained, “I didn’t feel like I needed to go,

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didn’t really want to but Mom and Nathan went a lot.” Addie’s parents didn’t attend any support

groups in their community either.

Nathan did not go to the support groups in the hospital as much as Addie would have

liked him to. Nathan mentioned he enjoyed going although he did not always feel up to it.

Nathan shared his experiences; “Sometimes I did art with the other kids at the hospital. I would

go to the lounge a lot and scooter my IV there.” The lounge was an open space in the hospital

where families could relax and play. It was equipped with a full kitchen for baking, arts and

crafts, air hockey table, foosball, and computers with Internet access. The lounge also had a

family room set up with rugs, couches, flat screen television, and video games. Nathan

remembered, “I would go on the computer and talk to my friends from home. I played air hockey

with my Mom and Dad and I loved playing the Guitar Hero game there.”

During our time together we also discussed the experience they had with the Child Life

Specialist at the Hospital. Child Life Specialists provide support for children and families who

are experiencing hospitalization. They aid in children’s understanding of the procedures they

may endure through play and provide coping support for the entire family. Addie recalled, “A

few child Life Specialists came by our room while we were there. They were great and always

around if I needed something.” Nathan mentioned, “They brought dogs up to my room for me to

play with. I have lots of animals at home so it was like I could take care of something.”

Many times during our interviews, Addie discussed the relationships she created with

other mothers and families at the hospital. Addie shared, “I met a lot of Moms on the floor and

thank god I did. They were my everything, they just know.” Nathan also mentioned that he found

comfort in playing with other children, “I liked to play with the kids on my floor. There were two

in particular, they had my cancer so we were the same going through it together.” Addie

revealed, “It was good to see what was ahead when we spent time with the other families. They

let me know, almost got me ready. Some of the children were like thirty days ahead of Nathan.”

Addie and Nathan shared many stories of the people they’ve met while they stayed in the

hospital for treatment. They mentioned one twelve-year-old girl who became nauseous from

anaesthesia and decided to have her lumbar puncture without any. Addie remembered, “She

would rather feel that pain than feel nauseous. Stuff like that reminds me that people have it

worse. Puts it all into perspective.” Addie also remembered another family that was there for

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over a year. Nathan recalled, “We were really lucky actually, a year is a long time.” During

support group, Addie learned that there were some parents there whose children didn’t make it

and some whose children did make it and are now thriving adults.

There was another family that arrived on Nathan’s floor midway through his treatment.

Their son had just been diagnosed with the same cancer as Nathan. Addie explained,

“The mother kept telling me ‘I’m not going make it, this is going to kill me.’ I sat her down and I said look, I was where you are a month ago and I said trust me you will find the strength because it just comes and it just [pause] you just become strong. You have no choice.”

Addie continued,

“Talking to that one Mom in particular made me feel so good. Like I could make a difference because of what we are going through. It felt like it was all a big circle. Even though new people came in and out of group, we are all connected. It was kind of special. A neat feeling.”

Addie and I often discussed the differences between the sympathy of friends and non-

immediate family and the empathy of those who have been impacted by cancer. I agreed with her

on many occasions that cancer doesn’t distress you the same way unless you’re immediately

affected by it. Friends and other family members can only sympathize so much and that is not

their fault. Addie summed our thoughts up nicely,

“Sometimes I think if you haven’t gone through it you don’t fully understand. I can see sometimes that even talking to family members who are not immediate might not get it the same way as someone who is going through it who you don’t even know. It’s those people who can make all the difference in your world. That is why I found so much comfort and understanding in the other parents on the floor. They just get it.”

Addie and Nathan have invited families into their home as a way to keep connected and

to maintain community support through survivorship. Addie also mentioned she felt support

from the doctors and nurses she met at the hospital. She recalled, “The doctors and nurses can be

your biggest resources. I talked to them a lot and wasn’t afraid to ask questions. They were

always there for comfort and for hugs too.”

Addie’s workplace was supportive during Nathan’s treatment. Her co-workers raised

money to help her cover the cost of gas and parking. Addie explained, “Parking at the hospital is

so expensive. It was worse when we were there for a month but not so bad now that he is in

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maintenance, but still.” Nathan’s father’s workplace also got together to raise money to purchase

a gift for Nathan during his treatment. Nathan’s school presented him with a large gift basket

near the end of his treatment and sent a large birthday card signed by all the students.

Nathan attended an overnight camp for children with cancer during his second year of

chemotherapy maintenance treatment. Addie mentioned that the camp is privately funded and for

children that are in any stage of cancer treatment. Many children continue to receive their

treatment on the campgrounds while participating in many activities like canoeing, swimming,

art, and leadership games. Nathan mentioned other activities he participated in at the camp such

as rock climbing, drama, and a variety of sports. Addie felt that it was essential that Nathan

attended the camp in hopes of gaining his independence back. She also discussed how beneficial

it would be for Nathan to form friendships with other children experiencing cancer.

Nathan followed a daily schedule at camp. He was able to choose electives in his

schedule, which were additional activities aside from his core programs. Nathan remembered

conquering a bit of a fear he had while at camp. To overcome a fear of heights, Nathan took part

in a tree top walk. He explained, “It was like an obstacle course up high in the trees. You strap

yourself in by a harness and walk across wood planks.” He also enjoyed all the different arts and

crafts activities; he participated in almost all of them. Nathan brought home all his work from

camp and stored it in a box in his room. This box also contained other cancer experience related

items he wanted to keep.

Coping

During our time together, Addie shared how she dealt with the emotions that

accompanied her while staying in the hospital with Nathan. She explained, “I wrote in a journal.

I kept it because I wanted a safe place to release my feelings and to have something to look back

on.” In another interview she mentioned that she continued writing in it even after leaving the

hospital. She plans to give it to Nathan when he is older, “I want him to know he wasn’t the only

one who was dealing with it.”

As much as Nathan enjoyed going to group activities at the hospital and spending time

with other children on the floor, he also felt comfort being alone in his hospital room. There were

many days were he just wanted to stay in his room. Nathan described many activities that

brought a sense of comfort to him. He enjoyed playing video games in his room and always

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requested the presence of teddy bears on his bed. He explained, “The teddy bears sound kind of

weird I know, but it was just comforting to have teddy bears around.” Aside from video games,

Nathan also discussed the use of the building toy Lego, “Playing video games and Lego really

helped me just concentrate on one thing like putting the pieces together.” Even though being

alone brought Nathan a sense of comfort, he would also become quite nervous and anxious.

Activities that required focus and concentration seemed to help conquer these feelings the most.

Nathan also revealed that he knitted during his treatments and hospital stay. When I asked him

who taught him how to knit he shared, “My Mom and Nana on my Step-Mom’s side and my

Papa. When he ruptured his appendix and he knitted in the hospital. I decided to knit when I was

there too. Took it over.”

On many occasions, Nathan mentioned sport-related activities that helped him feel good

at the hospital. Shortly after Nathan was diagnosed, he wrote a letter to a famous football player.

The football player replied to Nathan’s letter and mailed him autographed memorabilia. He kept

that letter by his hospital bed and took it home to put in his room upon leaving. More than once,

Nathan discussed his football party in the hospital. As mentioned earlier, the hair artist was

another moment that brought Nathan a sense of comfort and mastery. He had reminded me

during one visit, “I wanted to do it for my party, something cool and I had to shave it eventually

anyways. My friends thought it was wicked. It made me really happy.”

Online social networks

Addie discussed social networking during each visit we shared together. Besides the

community in-person parent and cancer groups, she joined many Facebook groups geared toward

childhood cancer, parenting, and coping. She recalled, “There have been people that have added

me to Facebook just so they can talk to me because you are going through the same thing.

Because you know and understand.” Through social networking, Addie became friends with a

woman in California. Her son had been diagnosed with non-Hodgkin’s Lymphoma. They would

write back and forth sharing stories, listening to one another, and offering their support in times

of hardship. Nathan and the woman’s son write letters and mail them to one another to this day.

Addie shared, “Once our boys are done with treatment completely we are going to California to

visit with their family and celebrate.” Nathan remembered,

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“He actually just received a letter I mailed to him last week, my Mom said that it was good timing because his last chemo got him down in the dumps and I think this maybe made his day.”

Family and friend support

Addie, Nathan, and Noah utilized their friends and family as resources throughout

treatment and continue to do so in remission. Nathan explained that his friends came to the

hospital to visit him when it was allowed. At times Nathan was extremely sick and had a

weakened immune system. He shared, “It was hard when they couldn’t come but when I did see

them it was really good even though it wasn’t too often.” Addie’s friends and coworkers also

came to visit her and Nathan at the hospital when it was safe to do so. At home, Noah would

share what was going on with his brother with his friends. He mentioned, “I would keep them in

the know. They were great listeners when I told them how I felt about it all.”

When Nathan was first diagnosed, his friends wrote many letters and drew pictures for

him. In one interview he shared, “The letters really lifted my spirits.” Nathan kept these letters

and pictures in a keepsake box with other related documents from his cancer experience. Addie,

Nathan, and Noah mentioned the influence of their family during Nathan’s treatment. In

discussions, Addie expressed gratitude toward her parents. She explained, “I am lucky I was

raised to be very independent and a strong person, that helped me get through all this.” She went

on to reminisce the first three months of Nathan’s treatment,

“It was hard for me the first 3 months. I was exhausted. Thank god I had my family and friends. Because if I didn’t, I don’t know if I would have been able to keep it together.”

In another interview Addie clarified that her friends were always there for her anytime she

needed them. They constantly called her on the phone and checked in by text message and email.

As mentioned earlier, Addie described her parents’ help on many occasions, always referring to

them as her ‘rock’.

Nathan expressed how grateful he was for his family’s ability to keep him in the utmost

positive state. He was thankful that they could be by his bedside when he needed them. He also

mentioned he felt a bit spoiled while going through treatment,

“They helped me out a lot. They spoiled me sort of. They were nice to me and they were just with me. I was basically with one member of my family the whole time. It was good

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for me to have them around. I found when I wasn’t around them I was nervous and lonely. When I was with them I wasn’t as nervous.”

Noah confided in his grandfather while he and his grandmother took care of him. They

planned outings together to keep their minds occupied and were great listeners when one of them

needed support. Noah shared, “I talked to him (grandfather) about Nathan’s cancer because

sometimes I would worry and stuff. I would also call my Dad a lot too.” Noah tried his best to

keep himself distracted as he mentioned, “I tried not to think about it as much.” Noah played

video games frequently and went on long walks around his neighbourhood. This helped him

clear his head and get away for a bit.

Nathan and Noah rarely discussed Nathan’s cancer and treatment in depth. They both

referred to their talks as being ‘normal’. They spoke with each other on video chat and Noah sent

his electronics to Nathan in hospital. Nathan remembered this as being particularly helpful

during long treatments as he could play on his brother’s iPod and communicate with friends.

Nathan described his feelings,

“I’m kind of glad we didn’t talk about cancer. I didn’t want to be honest. I don’t know to keep my mind off things. I just liked to not think about it when I was at the hospital. Talking to Noah gave me that ten minutes when I could think about other stuff and like not focus on cancer.”

Noah confirmed this as he mentioned they would discuss events at school, sports, friends, and

how he was doing.

Distant family and friends of friends who were experiencing similar events were always

invited and welcomed into Addie, Nathan, and Noah’s home. All three family members felt this

was helpful as they transitioned into survivorship. In particular, Addie felt that it was continually

helpful to connect with other parents post treatment. Two stories were shared with me about

people they have invited into their home. One of Addie’s friends had a friend whose child had

survived a different type of Leukemia than Nathan’s. Addie hosted a dinner at her home for both

family members. They have also connected with one of Addie’s co-worker’s daughter who is

currently twenty years old. She had cancer when she was 12 and is also a survivor. Addie and

Nathan both mentioned how vital it was to have discussions with adults and children that had

survived a paediatric cancer. Addie and Nathan explained it was helpful to understand what she

was experiencing, as it was a glimpse into what their future may hold.

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Outcome

{Sometimes if I’m at school and there is a call for me, it can make my stomach turn thinking its cancer. Before I used to be stupid scared about it. Now I feel normal}

-Nathan

Transition home

Upon arriving home, Nathan recalled staying in bed quite a bit in the beginning.

Although he was happy to be home, he missed the home centre he spent time in while at the

hospital. Nathan remembered finding it difficult to adapt to a new schedule at first. His life had

been one way for so long, finding a new sense of normalcy outside the hospital did take some

time to restore. Nathan explained,

“It was like I preferred being at the home house and hospital. It was weird; I was so used to hospital life at that point. I literally had to get used to my old schedule that was before the cancer.”

Addie, Nathan, and Noah agreed that upon arriving home, Nathan continued to illustrate feelings

of fear when left alone. Nathan mentioned, “At first I was still scared. I was nervous when I was

left alone in my room or the house. Whenever the phone would ring I would get really scared.”

Noah and Addie clarified that Nathan was afraid a doctor was calling to tell him he had cancer

again.

Addie described her feelings about the transition home as being tough. Addie attempted

to work from home during this time. She moved her computer area to the upstairs hallway

outside Nathan’s room. Nathan would call for her constantly, which made it difficult for her to

get any work done. She had decided to change the hours in which she tried to work. She started

getting up at four AM while the boys slept and worked till about eight AM. She would then

attend to Nathan, as she was able to give him her full attention. She would then return to her

computer and work from six PM to about ten PM. Every other weekend when the boys visited

their father, she would work the entire weekend to make up the time or try to work ahead. This

schedule was only temporary as over time Nathan regained his confidence and independence.

Nathan did confirm that all those feelings of fear and isolation went away with time. As

they did, he began to appreciate the comforts of his home that he had missed. He shared that

eventually sleeping in his own bed was quite exciting. He was also tremendously excited to

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spend time with Noah. Noah mentioned, “It was good to have us all back in the house and I was

happy to hang out with my brother again.” Noah, Nathan, and Addie agreed that Nathan worries

about getting that phone call from time to time; however, it does not take over his emotions as it

once did. He shared,

“Sometimes if I’m at school and there is a call for me, it can make my stomach turn thinking it’s cancer. Before I used to be stupid scared about it. Now I feel normal.”

As time passed, Nathan could return to school fulltime. This exciting moment for their

family did not come without obstacles. One day, Addie and Nathan were walking in his school

when a teacher stopped and stated, ‘Hats off in school’. At this time, Nathan’s hair had not

grown back and his baseball cap had brought him comfort and confidence. He did not take it off

as the teacher repeated herself. Addie recalled, “I loudly told Nathan to keep his hat on. I was so

upset.” Later the teacher had realized who it was and apologized to them.

Nathan did experience some bullying when returning to school. When Nathan and his

friends got into fights they would often call him the name of a popular bald cartoon character.

Nathan eventually talked to his friends and explained how it hurt his feelings. Nathan discovered

that they never meant to hurt him or bully him. Fortunately the bullying Nathan experienced did

not last long. Nathan described his friends as being incredibly supportive during his illness;

however, adjustment by all was needed post treatment.

As Nathan missed half a year of school, Nathan, Addie, and his teachers decided it would

be best to drop out of the extended French program he was in at the time and catch up with the

grade material in English. He considered this a set back. Addie and his teachers decided to hire

him a French tutor. He caught up faster then expected and is continuing to thrive through his

extended French program. He shared that he is excelling in all his subjects in school and

discussed a recent math test mark with me. He also mentioned that he returned to playing

football and that everything so far was going well. Nathan does feel that his athleticism has

changed compared to before his diagnosis. During his treatment he had fears that he may not be

able to play quarterback again, a position that he worked hard for. He explained, “Before I was

really fit, now I have to build it back up, my stamina and stuff. I might be quarterback again.”

Changes had also occurred within their home. Addie was extremely concerned with

germs and illness when Nathan returned home. Since his immune system was weak, Addie and

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Noah ensured that their hands were always clean after entering the home. As mentioned earlier,

Addie recalled placing many hand sanitizer bottles all over their home. She was anxious when

friends and family visited their home. She shared,

“I didn’t let anyone is the house unless they washed their hands, and asked ‘Do you have a cough, do you have a cold, do you have this, do you have that? Super cautious. Not anymore though. Now we are in a different place, a good place.”

As Nathan started to feel better, he noticed that there were certain foods and smells that

he was surprisingly sensitive to. At times they could make him literally sick. Nathan explained,

“I can even look at a food and just be reminded of the hospital. It makes me so nauseous.” As

mentioned earlier, Nathan was anxious that his cancer would return and the scents of those foods

were unwelcome reminders of what he’d been through. Noah recalled a time where Nathan was

convinced he had cancer again. He stated, “That was the thing about Nathan, any sickness he

had, he thought it was cancer. It ended up being a kidney stone.” Fortunately these feelings for

Nathan have eased over time.

On one occasion, Addie mentioned that Nathan’s attitude changed when he arrived home.

She recalled this as testing her parenting abilities as he had a bit of an ‘I have cancer and should

get everything I want attitude’. She explained, “I changed that in a hurry. He really gets on my

nerves sometimes, I know that’s terrible to say, but its normal.” Noah noticed this attitude about

his brother as well. He shared, “There was this time he was being really bad. My Dad had a good

talk to him. After that, he changed even more. It was good.” Noah mentioned that Nathan’s

attitude at the beginning was quite a challenge and that he was not expecting this as his brother

entered remission. Even though Nathan is back to himself, at the time, Noah wished his attitude

had changed faster. Noah felt that cancer should change a person for the better. He recalled this

as getting a second start in life. He shared, “He got a second chance, a second start in life you

could say. I didn’t really see that whole new perspective thing for him at the beginning.”

In terms of family routine and function, Addie recalled the first year being a bit difficult.

“It was hard to schedule vacations and family stuff. He had many appointments that took up

much of our time.” As life started to normalize, they continued with planning family vacations

and summer outings like they had in the past. Last year they even took a big trip across Canada.

Nathan remembered it being a bit of a celebration, “I wasn’t sick but still doing my maintenance

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stuff. We had less appointments and school and everything was feeling normal again.” Addie

mentioned that it was the perfect time to plan a big trip like that for her and her family.

Sibling Relationship

Noah and Nathan’s relationship has changed through the cancer experience and continues

to evolve in survivorship. In the beginning, Noah felt that Nathan continued to receive much of

his parent’s attention. Noah reassured me, as he did when we discussed Nathan’s diagnosis, that

he was okay with this. He understood that Nathan had a great deal of needs as he transitioned

home. Noah mentioned that it was difficult to see how tired Nathan was post-treatment. He also

had not had the opportunity to see Nathan completely bald yet. He explained, “When he came

back home it was a bit weird for me. He looked really sick. It was a little hard at first to see him

like that. But I knew he was going to get better because of the chances.” Nathan and Noah both

agreed that their relationship has strengthened since he has returned from the hospital. Noah

mentioned that they talk more now than they did before he was diagnosed and Nathan feels that

they are much closer now. He explained, “We still get into siblings fights sometimes, but that’s

normal.”

Giving back

During one interview Nathan shared that he regularly visits the hospital to help the

children on the floor where he was once a patient. He talks to the children about their blood

cancer and coping strategies while trying to be a source of support for them. He did do this

infrequently while he was in treatment; however, he actively participates in this more often now.

There are children on the floor that he writes letters and get well soon cards to. Nathan shared,

“I do it now because I had all those experiences that the kids there are having. When I was there I was scared and didn’t want to talk all the time. I didn’t go to a whole ton of group stuff. Just a little. Now I see how helpful these things are. I like to give back and help kids that are going through the same cancer stuff as me.”

Fears about remission

For the most part, Addie, Nathan, and Noah feel very fortunate for their circumstances.

Since remission, Nathan has only been in the hospital a few times with fevers. Addie shared that

fevers are always a cause for concern as Nathan’s immune system was weakened; however, she

is never too worried about it. The doctors also assured them that this is something that is normal

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to encounter. When this happens, they take Nathan to the hospital to ensure there isn’t serious

infection as a result of the fevers. For the most part, the family members were not overly

concerned with this.

Addie mentioned that Nathan was probably the most worried that this cancer would come

back or was back for that matter. She confessed that she also worries at times, “I worry about

relapse sometimes but I try not to think about it, you know?” She finds comfort in the friends she

has who have sons and daughters that have never relapsed and are adults now. She explained that

some of her worry stemmed from the fact that Nathan is a boy and relapse rates are higher for

boys than girls. This is also why the maintenance period is longer for boys. Addie shared, “I do

remind myself and him that if there was something wrong it could come up in the blood work

and we would know.” Nathan completes blood work twice a month. Many times Addie

mentioned that she does not blame Nathan for feeling this way. She explained,

“Sometimes I have to get an iron shot and I get nervous, then I think of Nathan. It just puts everything into perspective. I better suck it up and get these needles because my kid has been through so much more. When you’re going through a little bit of pain you know, something so insignificant and you think well this isn’t really that big a deal.”

Addie and Nathan take notice of who is battling cancer around them. Addie explained,

“Before I would look at people and the thought wouldn’t even cross my mind. Since this has

happened to us we notice who has cancer.” Nathan described that he felt like he was part of a

special club. He commented, “Its like a blue card disease, once you get the blue card you notice

how many other blue cards there are out there too.” The card Nathan was referring to is an

identification card that all patients receive in neighbouring hospitals. This card allows healthcare

professionals to gain access to personal and health information within seconds. Even though this

card is not localized to cancer patients, Nathan discussed it as being similar to a membership

card for cancer patients. He went on to say, “You just notice how many other people are in it.

You think that cancer is so rare and you realize that it’s not very rare at all.” Addie and Nathan

both mentioned the idea of being part of a club quite often. Nathan would sometimes explain,

“You’re not in it, until you’re in it.”

Advice

During one of our last interviews, I asked Nathan if he could give advice to another child

experiencing the same events as he did, what would he say? Almost instantly he replied, “I

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would say stay positive. You might as well. Why be negative?” He also explained how the little

things he endured made him stronger in dealing with his cancer experience overall. He

commented, “The needles made me tougher. It kind of made me realize that I shouldn’t wimp

out of something that doesn’t even hurt that much. No point. People are dealing with tougher

things.” I asked Noah the same question, but for advice to another sibling. He responded,

“Be really patient. Know that you aren’t going to be the centre of attention. You have to be able to be alone at times unless you talk to someone. Maybe like social networks. Also, find something to do and people to hang out with. That’s the big thing.”

Addie was asked the same question, what advice would you give to another mother who

was in the same situation as you? She shared,

“I would say to her stay strong in front of your kid and cry behind closed doors. Use as much support systems as you can like friends, Internet, doctors, support groups, and other Moms. I say Moms because I am a single parent but I mean parents in general. Talk to people. Always talk to the other people on the floor. Don’t keep it inside or lock yourself in that room. You need to learn as much as you can and educate yourself, ask questions.”

She went on,

“Umm [pause] I try not to let the little things in life bother me. They still do and I’ll sit back and think about things. Like if I say something to Nathan that isn’t so nice, I’ll apologize. You know, things like that. My motto is life is short and you never know what is going to happen to you. Do what you can to better yourself. [Pause] All I can say is when something like this happens it sure changes the way you look at life.”

Artifacts

Upon arriving home, Addie gave Nathan a box to place the items he kept from his cancer

and hospital experience. During one interview, Nathan went to his room and retrieved the box to

share with me. There were many items in the box that included photographs of friends and class

pictures that were taken during his treatment. There were letters and drawings from his school

friends as well as new friends from the hospital.

Camp Necklace: Nathan retrieved a long braided necklace from his box. This was a

necklace that all the children at the cancer camp made and wore during different activities. His

daily schedule was attached to the necklace as well as a variety of art and craft items. Nathan

hesitated on the wallet that was attached to his necklace. He mentioned that activity as being one

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of his favourites. It was an activity that he chose as one of his electives. He explained that the

wallet was made entirely from different colour duck tape.

Figure 1. Nathan’s camp necklace.

Bracelets: During the hospital stay, Nathan and Addie were given yarn bracelets.

Together, they wore them day in and day out. Nathan removed his shortly after the end of his

hospital stay. Addie, however, still had hers on during our interviews. When asked why, she

explained, “I ended up starting to look at this as a good luck charm. I’m keeping it on till the end.

But I can’t wait to take it off because it’s getting gross and just because.” Even though Nathan

was in remission, he was still having maintenance chemotherapy. Addie confirmed that even

though she knew they were living in remission she wanted to wait to take the bracelet off until

the last maintenance treatment was over.

Figure 2. Addie’s yarn bracelet.

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Bravery Beads: Addie reminded Nathan to show me his bravery beads. As he passed me

his bravery bead collection, Addie explained that every time he completed a procedure or

experienced an event in the hospital, he was given a bead that represented those events. All the

children and families in the hospital were welcomed to participate in this program. Nathan

shared, “Yeah I had a lot done as you can see. I like to keep this even though it reminds me of

everything I went through.” As we discussed the necklace, Nathan tried to recall what procedures

and achievements the beads stood for.

Figure 3. Nathan’s bravery beads.

Tattoo: Addie got a tattoo three weeks after Nathan was diagnosed. It is a symbol of

Nathan’s cancer and their experience together. The tattoo aided in her ability to heal and give

meaning to this life-changing event in their lives. In Addie’s words,

“I chose the tattoo because the woman is a guardian angel and the ribbon is the colour that represents Leukemia. I chose the words hope, faith, and courage. Hope because I hoped for the best and had faith that Nathan would pull through it. Courage because he is one of the most courageous kids I know.”

Figure 4. Addie’s Tattoo.

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Chapter 5 Discussion

It is known that when one family member is affected by adversity and stress, all family

members are affected as well. McCubbin, Balling, Possin, Frierdich, & Bryne (2002) explain that

when a child is diagnosed with cancer, the entire family unit is faced with many new stressors

and demands. Some of these may include multiple hospitalizations, extensive and painful

treatments, alterations in the parent-child relationship, disruption of sibling care, role changes,

and fears of death (McCubbin et al., 2002; Banerjee et al., 2011). In order to understand these

demands and how they uniquely affect each family member, the following research question will

be answered:

What are the family members accounts of dealing with childhood cancer and survivorship?

Discussion of relevant literature in relation to the individual experiences of each family member

will be reviewed as well.

Addie

Addie mentioned having feelings of guilt in the moments leading up to Nathan’s diagnosis.

She reassured Nathan that he was fine and that his test results would come back negative for

illness. Relaying the diagnosis of cancer to her child caused her to feel guilty. Additionally,

Addie was overcome with shame, as she had to deliver this message after she told Nathan

everything would be fine. Addie’s description of feelings of guilt and blame were shared among

other parents of children living with cancer highlighted within the literature (Ross, 1979;

Banerjee et al., 2011).

During the hospital stay, Addie and Nathan found moments to laugh and spend quality time

together. From the Systems Theory of Family Resilience (STFR) perspective, Addie and Nathan

illustrated a resilient process by spending quality time with one another (Walsh, 2003). Addie

and Nathan decided to disclose a moment they experienced in the ambulance on the way to the

hospital. Both mentioned how much they laughed in this moment. They also described how this

shared moment steered them away from the negativity of the current situation they were

experiencing. This may have increased their ability to adapt to the adversity that they were about

to embark on. McCubbin et al. (1997); Black and Lobo, (2008); Fise et al. (2002) & Lietz,

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(2006) discuss aspects of humour, family communication, and family time as being intrinsically

valuable as factors that aid in family resilience. The behaviours displayed by Nathan and Addie

are considered key processes of families who are resilient from the literature (Black & Lobo,

2008; Fise et al., 2002; Leitz, 2006; McCubbin et al., 1997). We can see that family time is

important to Addie when she discussed her tattoo. She explained that it was symbol of the time

she and Nathan spent together during his cancer experience.

Addie recalled the first week in the hospital as being overwhelming. A great deal of

information was given to her while she and Nathan attempted to adjust to their new surroundings

and routines. McCubbin et al. (1997) note, “When family patterns and routines change, receiving

information about that event or illness is key to the family’s overall adaptation” (p. 7-9). Addie

eventually felt the feeling of being overwhelmed subside as she began taking charge of educating

herself about Nathan’s illness by asking many questions. Assertiveness has been associated with

better adjustment and adaptation outcomes in families who are experiencing a stress such as

illness. Overholser and Flitz (1991) have acknowledged that the feelings of helplessness that

parents experience typically decreases when they have a sense of control in the midst of their

child’s illness. Overholser and Flitz (1991) go on to conclude that when parents feel a sense of

control, it positively affects how the whole family will cope with the illness and adjust long term.

This idea is portrayed when Addie discussed the advice she would give to another mother in a

similar position to hers. Her advice included the urgency parents need to find out as much as they

can about the situation that they are embarking on. She stated, “You need to learn as much as

you can and educate yourself. Ask questions.”

While in the hospital with Nathan, Addie was forced to reflect upon her career in ways she

never thought she would have too. She stayed with Nathan during his entire hospital stay and

continued to care for him around the clock while transitioning home. Despite Nathan’s father’s

assistance, Addie felt his level of aid to be inadequate. As a single mother supporting two boys,

she had no other choice but to continue working in the hospital room. This was hard at first,

causing her to work all hours of the night. She was able to be the most productive while Nathan

slept which meant her giving up much needed rest. Although she felt fortunate enough to

continue working, the demands of Nathan’s care along with balancing work may have added

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additional stress. Throughout this, her workplace continually reminded her that they were eager

for her return.

As Nathan returned home, his care requirements were still substantial. Addie knew she

would have to make some sort of change in her work life. In order to obtain successful

adaptation in the face of Nathan’s illness, Addie explained to her employer that she could either

continue to work from home or she would have to quit. Her advocacy was successful and Addie

was able to work from home for a year and a half. In relation to the Resiliency Model of Family

Stress, Adjustment, and Adaptation (RMFSAA), Addie adapted newly instituted patterns of

functioning in order for her family to reach bonadaptation (McCubbin & McCubbin’s, 1987,

1989). Addie took initiative and was willing to change her work schedule in order to manage the

hardship her family was dealing with. Patterson (2012) explains that flexibility of family

members is one of the most significant processes resilient families often present.

Planning family trips, outings, game nights, and mealtime were a vital source of strength in

this family’s functioning and schema. Fortunately these strengths are considered to be key

processes that are highly associated with resilient families by the STFR (Black & Lobo, 2008;

Fise et al., 2002; Leitz, 2006; McCubbin et al., 1997; Walsh, 2003). For a brief moment, Addie

found it difficult to schedule family outings while Nathan was ill and transitioning into

survivorship. This caused stress for Addie as it signified a part of their normal life and routine

had become altered. According to the RMFSAA, new ways of family functioning, priorities, and

goals would have to be established in order for this family to experience adaptation long term

(McCubbin & McCubbin’s, 1987, 1989). Addie promised the boys that eventually they would

take a big trip across Canada when Nathan was feeling better. Fortunately, their lives began to

normalize and family priorities changed. This allowed Addie, Nathan, and Noah to plan their big

family vacation. They mentioned it would be particularly special this year as Nathan was free of

treatments. The family utilized these strengths in order to help reach successful functioning once

again.

Both Addie and Nathan mentioned that they were concerned about the chances of the

cancer returning. This thought is natural and may follow the survivor and their family around for

a lifetime (Dixon-Woods, 2005; Boyd & Hunsberger, 1998; Schwartz, Hobbie, Constine, &

Ruccione, 1994). Scwartz et al. (1994) recommend we perceive cancer survivorship as, “A stage

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in a life-long chronic illness, rather then as an acute illness that ends with a cure or some

arbitrary end point” (p.295). For this reason it may be unlikely that families will see this as a

stress placing them in a maladaptive crisis state. Relapse is a big concern, though the family

understands that it would be detected early as blood work and doctor’s appointments would be a

continued routine in their lives. The second dimension related to family resilience discusses the

life stage in which the family encounters a crisis (Simon et al., 2005). Since survivorship is

viewed as a stage in life-long illness, the resilient processes illustrated by the family today may

be different further down the road in relation to the illness and the life stage the family may be

in. For example, the key processes the family may exhibit could be different if a similar case

study was conducted when the Nathan and Noah are entering college.

Noah

A sibling can face a number of adversities while their sibling is experiencing cancer. When

Nathan was diagnosed, Noah explained that his daily schedule and routine were quite normal.

The one disruption that he mentioned was a change in caretakers. In the first couple of weeks,

Noah was not able to see his mother or brother. As Addie and Nathan settled in the hospital,

Noah was only able to join them for a limited number of visits due to Nathan’s vulnerability to

contract illness. Prchal and Landolt (2009) note that healthy siblings often feel a decrease in the

amount of time their parents spend with them. Prchal and Landolt (2009) also mentioned that

siblings of childhood cancer patients are at risk for developing emotional, behavioural, and social

problems. Noah’s perspective did not illuminate any of these risks. Dixon-Woods, Young, &

Heney (2005) have also found that siblings are more likely to develop depression, anxiety,

developmental delays, and reduced peer activities. Likewise, Houtzager, Grootenhuis, Caron,

and Last, (2004) found that siblings often experience unpleasant and conflicting emotions such

as feelings of fear, isolation, jealousy and guilt. Noah’s experiences seemed to illustrate the

opposite. On many occasions, Noah explained that he understood that he had to be patient and

that he would be alone at times. He accepted the reality of not being the centre of attention very

early on. When family members understand and acknowledge the demands of the adversity, they

are contributing to a positive family belief system that aids in their resiliency (Walsh, 2003).

Noah felt that he was naturally independent and did not require a lot of attention. This,

along with his acknowledgement of his brother’s cancer, resulted in a better understanding and

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acceptance during the adversity that followed. He felt that his positive outlook relieved some of

his mother’s stress. He also felt that his independence allowed his mother to concentrate on

Nathan without having to worry or feel bad about the lack of time she could spend with him.

Noah demonstrated the same findings as in the Sloper (2002) study, which interviewed ninety-

four siblings of children with cancer. Noah and participants in Sloper’s (2002) study gained an

additional increase of independence, maturity, understanding, and compassion.

When Nathan returned home, Noah’s perspective remained the same. He assured me that

he understood Nathan had a great deal of needs that would require the attention of his mother.

Noah felt a change in his home dynamic as Addie and Nathan returned home. He mentioned that

these changes were not stressful nor did they cause anxiety but rather they were something to

adapt to. There were many doctors’ appointments, and in addition, his mother was now working

from home. Noah described these changes as, “Not bad, just new and different.” Noah helped his

mother around the house as much as he could. He would try to calm her nerves and lift her spirits

if she was feeling down. Noah decided to take over all of Nathan’s chores until he felt well

enough to do them himself. Even though they were Nathan’s chores, he knew it would help his

mother, giving her more time to care for Nathan. Here, Noah revealed a sense of closer relations

with his family members (Sloper, 2000). As Noah assisted Addie, their relationship strengthened

which may be why the outcome of their story illustrates resilience and adaptation. Orbuch, Parry,

Chesler, Fritz, and Repetto (2005) also found that the child in remission may be more resilient in

their survivorship as a result of their family members’ positive relationships with one another.

Throughout the cancer experience, Noah illustrated his willingness to be flexible in

supporting his family’s ability to recovery. From the family systems approach, the organizational

pattern of flexibility that was illustrated by Noah was vital in his family’s ability to reduce

dysfunction during the cancer treatment and transition home (Walsh, 2003). Flexibility is one

process of many that has been abundantly mentioned in the resilience literature (McCubbin et al.,

1997; Patterson, 2002; Walsh, 2003). As noted, Noah demonstrated a sense of empathy towards

his mother and brother during the diagnosis, transition home, and continually through

survivorship. Harvermans and Eiser (1994) found that although sibling’s lives have been

disrupted by their sibling’s illness, they become more empathetic towards others as a result of

their experiences. Throughout all of this, Nathan and Noah’s relationship had strengthened. Both

Noah and Nathan agreed that they talk and interact more now then they had prior to Nathan’s

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diagnosis. According to the Relation-Cultural Theory, this relationship may act as a protective

process if and when the family faces future adversity (Hartling, 2008).

Nathan

Nathan’s experiences are quite unique from Noah and Addie’s. Nathan dealt much more

with a sense of fear. He would become fearful and develop anxious thoughts when left alone.

Nathan’s sense of fear has been noted in the literature by other childhood cancer patients

(Moody, Meyer, Mancuso, Charlson & Robbin, 2006). In the beginning, Nathan had feared

procedures requiring needles; however, he adapted to them quite quickly as they were almost a

daily occurrence. Dixon-Woods et al. (2005), Boyd and Hunsberger (1998), Moddy et al. (2006)

noted that children with cancer often develop anxieties surrounding pain from procedures. Even

though Nathan feared the procedures in the hospital, he attributed his adaptation and resilience to

overcoming those fears. He explained that the needles and procedures he underwent made him

stronger. He felt that the other children around him were often enduring more severe procedures

than he was himself. This developed into the perspective that what he was going through was not

so bad.

Nathan also described his fear of death. During times of isolation, this fear tended to

deepen. On many occasions, it was shared that Nathan became nervous when the telephone

would ring. He explained that he feared the doctor was calling to deliver news that he was going

to die. Nathan did not like to be left alone. He requested that Addie sleep with him in the

beginning of remission. Nathan was afraid that he would not wake up or that no one would hear

his cries for help. Fear of death is a common emotion that children experiencing cancer hold

(Hildenbrand et al., 2011; Dixon-Woods et al., 2005; Boyd &Hunsberger 1998).

Throughout his experience with cancer, Nathan never had the ‘I feel sorry for myself’

attitude. Even though his illness was the central focus of their family’s stress, he and his family

thrived throughout the process. Nathan’s positive outlook during this difficult time is an example

of optimism and perseverance within the STFR framework that is often demonstrated by resilient

family members (Walsh, 2003). The hair loss that often accompanies chemotherapy treatment

can be a visual realization of illness in its entirety. Addie and Noah both noted that Nathan’s hair

loss was a pivotal moment during their experiences. Nathan seemed to embrace this likely

outcome. Knowing his hair would most likely all fall out, he had a hair artist shave his favourite

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football team’s logo in his hair. Here, Nathan created a positive experience out of a situation that

some children and families may have trouble accepting (Hildrenbrand et al., 2011). With this, the

STFR framework suggests that the process of making meaning through adversity can promote

healing and growth for all family members (Patterson, 2012; Walsh, 2003). When it was time to

shave his head, his grandfather accompanied him. This was a way for the family members to

cope and support one another through what most would consider a difficult moment (McCubbin

& McCubbin, 1987, 1989). The ability to utilize social support within the family system has been

noted within the ecological and family resilience research as necessary for optimal adaptation

(Black & Lobo, 2008; Leitz, 2006; McCubbin et al., 1997; Ungar, 2011, 2013; Walsh, 2003).

Nathan embraced his experiences by participating in an overnight camp designed for

children with cancer. He shared many memories from his time at the camp. He brought many

memories home with him as well. He shared some of these with me, explaining all the items on

his camp necklace with pride. He enjoyed interacting with other children that were currently

undergoing treatment and in remission as well. These experiences and time away from his family

gave Nathan a sense of independence back as well as mastery and control.

Children who experience childhood cancer often miss school or obtain a low attendance

record (Hymovich & Roehnert, 1989; Woodgate, Degner, & Yanofsky, 2003; Dixon-Woods et

al., 2005). As this literature predicts, Nathan missed half a year of schooling due to a

combination of hospitalization and fatigue following chemotherapy. Nathan experienced some

bullying upon returning to school. Surprisingly, Nathan’s close friends were responsible for this.

Addie seemed to be affected by the bullying more than Nathan. Nathan explained that he

understood that they were joking around and had asked them to stop. He was sensitive about it

even though it was his friends bullying him. Studies are beginning to emerge about childhood

cancer and bullying (Lahteemaki, Huostila, Kinkka, & Samli, 2002). As Nathan was preparing to

return to school, he and Addie decided that a tutor would be beneficial for his educational

success. Nathan, among other childhood cancer survivors, often found it helpful to utilize a tutor

upon returning to school (Lahteemaki et al., 2002).

Nathan experienced feelings of anger during his cancer treatment and upon returning home.

Noah and Addie both mention that Nathan could become very angry at times. On many

occasions, Nathan disclosed this about himself as well. All three family members attributed this

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anger to certain medications that he was taking during his treatment. These medications had

known side effects that may have contributed to his aggression and irritability. It has been

reported in other studies that children with cancer can experience anger; however, this anger

usually originates from the emotions of the diagnosis and adjusting to their new routines as a

result of their illness (Mood, Meyer, Mancuso, Charlson, & Robbin, 2006; Woodgate, 2006).

Nathan’s anger was only reported as an adverse effect of his medications. No discussion surfaced

addressing anger towards the diagnosis or illness experience.

Resources

The central discovery in this family’s story can be found in the different types of resources

that they immersed themselves in. The resources that the family utilized and considered

significant were discussed during every visit and interview. Specifically, Addie and Nathan

attributed their family’s resilience and strength to the resources that they used and are continually

using during survivorship.

Family and friend support as resources

Nathan, Addie and Noah turned to each other, other family members, and friends during

this time of adversity. Addie confided in her mother and father during Nathan’s hospital stay.

They all kept their communication open and frequent with one another. They had provided her

with the emotional support that she needed in order to remain strong for Nathan. Their support

assisted in leading her to successful adaptation in the hospital environment and transition home.

Noah shared his feelings about Nathan’s cancer and treatment with his grandfather the most. He

also mentioned confiding in his father at times. Since Noah and his grandfather were living

together during Nathan’s treatments, he found it easier to turn to his grandfather for comfort

when he needed it. Positive family communication and support contributing to a family’s ability

to function well through adversity was also noted in the literature and in The RMFSAA

(Patterson, 2012; McCubbin & McCubbin, 1987, 1989). Even though Noah did not utilize all the

resources in his environment, previous research has shown that even engaging in one supportive

relationship can lead to a successful outcome during difficult times (Hartling, 2008; Overholser

& Fritz, 1991; Orbuch, Parry, Chesler, Fritz, & Repetto, 2005).

As mentioned, Nathan and Noah had become closer during treatment. Before Nathan’s

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cancer, the boys got along fine. They have a small age gap, but they enjoyed going on family

vacations and spending time together at home. They generally chose to spend time with friends

their age. Nathan and Noah would frequently contact one another over the phone while Nathan

was in the hospital. More often than not, they did not talk about Nathan’s cancer. Noah would

ask a few questions while Nathan chose what he wanted to disclose. Most of their conversations

were not about the cancer or how they each were feeling about it. They discussed things like

sports and friends. Nathan enjoyed this sense of normalcy. He was able to converse with his

brother while forgetting about his illness, even if it was only for a few moments. Their

relationship continues to strengthen as both boys agreed that this adversity has brought them

closer together. Black and Lobo (2008) also state that family communication and time spent

together assist in a family’s overall resilience to adversity.

Addie found that keeping communication open with her friends and coworkers was

important. Her friends were constantly there for her, always lending an ear to listen. They often

dropped off food and other items at the hospital for Addie and Nathan in hopes of helping in

some way. Nathan was often too ill for his friends to visit him at the hospital and also at home

during his transition. Essentially Nathan was secluded while he was ill. He had to utilize a

different method of communication in order to maintain his friends and social supports. Nathan

and his friends decided to communicate over the telephone and on Facebook instant messenger.

It was here that Nathan was able to give his friends information about his illness and temporarily

escape the stresses of hospital life. Utilizing friendships for social support during stressful life

events has been reported in the literature as well (Lietz, 2006; Brody & Simmons, 2007).

Woodgate (2006) also found that children with cancer felt connected, loved, and cared for when

they utilized friends for support during treatment. Within an ecological framework, the

interactional processes between the family members and their social supports illustrates an

understanding as to why resilient outcomes developed within this family (Ungar, 2011, 2013).

Noah briefly mentioned confiding in his friends for support during this time. Most of the time he

utilized family supports as resources.

Online resources

The availability of Internet access to seek information is infinite. With the advancements

and popularity of the Internet, online resources for childhood cancer families and their ability to

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aid in resilience is growing. Addie had the most experiences with online support out of the three

family members. She was a member of many different childhood cancer parental support groups

on Facebook. She also disclosed that many members of these groups would message her

privately to discuss their experiences with cancer and support one another. Addie frequently

mentioned that many friendships have blossomed as an outcome of being involved in these types

of online communities. According to the Relational-Cultural Theory, online community

relationships are two-way bidirectional in nature (Hartling, 2008). These relationships assist in

one’s ability to respond well during adversity as they foster mutual understanding,

empowerment, and authenticity (Hartling, 2008).

Addie and Nathan discussed one family in the United States that they developed a special

bond with. Addie met the mother in an online support group aimed towards parents. The two

mothers became close, talking everyday. This mutually beneficial relationship provided them

with emotional support and a sense of strength for each other. Coulson and Greenwood (2011)

also discovered that emotional support was most evident in parental childhood cancer online

support groups. The RMFSAA also recommends that families seek emotional support in order to

help develop coping skills which in turn, aids in the family’s ability to adapt to the changes

illness can bring (McCubbin & McCubbin, 1987, 1989). McCubbin et al. (1995) share

suggestive research that highlights, “Greater resilience is found in families who reach out to

others in their social environment, community members and resources” (as cited in Simon,

Murphy, & Smith, 2005, p.428).

Coulson and Greenwood’s (2011) study also revealed a sense of teaching and sharing of

medical information among parents in these online groups. Addie however, did not disclose

using online groups to gain or share information about cancer and relatable topics. When asked

what her advice would be for another mother, she mentioned that parents must learn as much as

possible. She did not specify if this knowledge should be attained by the medical team or through

the social supports that she utilized. Nathan and the boy, whose mother Addie had befriended in

an online support group, communicated quite a bit as well. They enjoyed sending letters by mail

to each other. Addie had mentioned on numerous occasions that she felt that this mother and the

other families online gave her a greater understanding of the experiences and events that she was

dealing with. These families could directly relate to one another through their shared experience

with this type of adversity.

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Community support and resources

Similar to online support groups, Addie and Nathan participated in different in-person

support group activities for adults and children at the hospital. Some of these groups were geared

toward adults, children, and some for the entire family unit. Addie discussed feeling a sense of

connection between the families within the groups she attended. She was able to learn coping

strategies as a result of being part of a larger community and support system. Ungar’s (2011)

ecological framework suggests if Addie had not had access to the resources and support in her

new community, she and her family may not have displayed the resilient qualities that they did.

Addie often discussed the significance of various interactions with other families she met while

at the hospital. She was able to confide in these families differently from her own family and

other social supports. Addie had explained that these families ‘get it’ in a way that others might

not. McLaughlin et al. (2002) also discovered childhood cancer patients and survivors may need

to express unpleasant or fearful emotions and feel that friends and family may not be able to

relate in the same way.

Nathan did not attend the community support groups as often as Addie. He did not always

feel well enough to attend, but when he did, he enjoyed them quite a bit. He found it helpful to

talk to other children about their shared experiences. Nathan often found a sense of comfort

being alone with his teddy bears, engaging in activities that he loved like knitting and playing

video games. This type of resource, or coping strategy, has been noted in the literature by

Lazarus and Folkman (1984) as emotional-focused coping (Carver & Scheier, 1989). This type

of coping by hospitalized children is often used simultaneously with community support groups.

Other studies have specifically found arts and crafts and video games as popular coping activities

among hospitalized children (Boyd & Hunsberger, 1998; Carver & Scheier, 1989).

As Nathan entered the remission and maintenance phase of his treatment, he volunteered

his time and spoke with other children at the hospital who were experiencing Leukemia. He

shared his experiences, offered coping strategies, and played together as they conversed. He also

wrote letters and drew pictures for the children on the floor that he was treated on. In remission,

Nathan realized the importance of interacting with other children who were experiencing similar

adversity. He stated, “Now I see how helpful these things are. I like to give back and help kids

that are going through the same cancer stuff as me.” Since he did not always attend support

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groups while in treatment, he expressed wanting to actively participate in them now as they aided

in his healing process and resilience. OverHolser and Fritz (1991) have also discussed this type

of social support in relation to better-adjusted children and parents as they continue through

remission and survivorship.

Addie relished the community support at the hospital during Nathan’s treatment. She

confided in doctors and nurses; however, the most vital and beneficial support came from the

families within the hospital community. This community consisted of other children and their

families on the same floor as Nathan. She shared many powerful moments with the other

mothers on the floor. They were there for one another during dark moments and for the positive

ones as well. Even though Addie was dealing with many stressors, she was there to support other

mothers during their breakdowns and through many tears. Putting aside her emotions and helping

these mothers aided in her own adaptability and resilience. It made her feel good about herself

and she felt strong in doing so. She was often giving other mothers advice that she would, in

turn, utilize herself. Here we see a vital example of how powerful communities can be in

facilitating resilient outcomes (Ungar, 2011).

A theme that continually emerged from their story and throughout discussion was the idea

that knowledge is not understanding, experiencing is understanding. The families on Nathan’s

floor and in online communities had a tremendous impact on his family’s successful adaptation,

strength, and resilience throughout this entire journey. It is this idea that carries us towards the

conclusion of their story.

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Chapter 6 Conclusion

{You’re not in it, until you’re in it} -Nathan

Many elements facilitated this family’s successful adaption and resilience in the face of

cancer. The community support the family immersed themselves in was, in their eyes, the most

vital aspect of their resilient outlook. A theme that continually emerged from their story and

through discussion was the idea that knowledge is not understanding, experiencing is

understanding. Until you experience cancer first hand (in your immediate relations) you may not

be able to fully understand its adversities. In fact, this family and myself believe that you cannot.

The emotional support from friends and family did assist in the family’s ability to endure change

and distress; however, cancer community support was held in a higher regard. The families that

Nathan and Addie met in support group, in online communities, and on their floor could

empathize with and support one another in ways their friends and family could not. The families

on Nathan’s cancer floor had a tremendous impact on their successful adaptation, strength, and

family resilience through this entire journey.

Hospital support groups, online support networks, and the community of families on

Nathan’s floor have meaningful similarities. All three resources involve a sense of community

that encourages the development of social support from adults and children who are experiencing

similar adversity. As noted in their story, friends and extended family could only sympathize to

a limited extent with the adversities being dealt with. The family explained the diagnosis,

treatment plan, and their emotions to other family members and friends in the hopes of receiving

support and compassion. This may have conveyed additional knowledge about the adversities

being faced for this family; however, this knowledge doesn’t necessarily mean complete

understanding. Experience often leads to understanding. The other parents and children at the

hospital and in online cancer communities can understand and empathize in ways outsiders to the

experience cannot. This may be why we see such importance of cancer community support

throughout their story.

Nathan described the experience with cancer and community support as being part of a

club. He explained on many occasions, “You’re not in it till you’re in it.” Often, being part of a

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club is a way to give meaning to a shared experience. In this story, the family found that utilizing

the community around them gave a greater meaning to their life with cancer as well as in

survivorship. The RMFSAA suggests that a family’s ability to give meaning to an adversity can

lead to resilience and adaptation (McCubbin & McCubbin, 1987, 1989). Nathan’s perspective of

a club is comparable to the idea that an inclusive culture or subculture exists among parents and

children with cancer. Culture is defined as, “A set of shared socially transmitted ideas about the

world” (Daher, 2012, p.66). Daher (2012) explains that culture involves, “Individuals who

interact on a regular basis, understand the same unwritten rules, and in relation to the subculture

of cancer, influence perception about the meaning of an illness” (p.67). It is evident through the

examples in this story and through discussion with the family that the idea of a subculture exists

within childhood cancer.

Many of the families discussed in their story decided to immerse themselves in this

subculture to gain emotional support from those around them in the hospital. In this study,

becoming apart of this subculture allowed the family to gain the type of support needed to adapt

and thrive long-term through the adversity of cancer and beyond. They felt a sense of belonging

and willingness to help others. This subculture had a significant impact on Nathan. He

volunteered his time during treatment and remission to visit with children on his floor in hopes of

giving them the same support he once received. Addie and Nathan described that their family’s

resilience was directly related to their community participation in the hospital and families they

met online. It is for this reason that one could believe that subcultures have the ability to promote

resilience and long-term adaptation for families experiencing childhood cancer.

Theoretical Significance of The Resiliency Model of Family Stress, Adjustment and Adaptation

The RMFSAA was developed to gain a deeper understanding of how families adapt

through stress and illness. Healthcare professionals use this assessment to determine whether

stress or illness will cause major crisis for a family. The RMFSAA provides better care,

strategies, and interventions for families who may be at risk for unsuccessful adaptation and

resilience. The experiences of Nathan, Addie, and Noah led me to believe that this family was on

its way to bonadaptation. I am not a healthcare professional trained in this model; however, the

family exemplified many of the elements the theory requires in order to reach successful

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resilience and adaptation. As noted, the family’s overall strength in developing family resilience

through cancer was gained through the resources they utilized. Specifically, the interactions

within their cancer community and subculture they immersed themselves in. The following

recommendations will be made in hopes of understanding families’ needs in response to

childhood cancer as the focal stressor of the model.

The RMFSAA model can broaden its description of the range of community services

families employ. The model addresses some social and community support as resources needed

to reach successful adaptation and resilience. The assessment of these community supports is

narrowly defined by services offered within the community, the medical team support, and other

institutions such as schools and churches. This study revealed a type of community support that

differs from participating in services within the community. Online cancer communities allow

individuals to have the opportunity to come together and continue to do so on their own terms.

They can interact with one another in a virtual environment at any time. The RMFSAA does not

include this virtual means as a type of community support or resource. As technology has

changed, the way we communicate and seek information has changed. Families now have the

ability to confide in other families from around the world who may be experiencing similar

adversities due to cancer. As found in the study, giving and receiving support through this outlet

was found to be the most meaningful resource. Mother-to-mother or child-to-child, there is a

sense of belonging amongst the childhood cancer subculture in this story as resilience flourishes

through these means.

The adaptation phase of the model also needs to acknowledge a family’s willingness,

ability, and availability to engage in the cancer community subculture as a resource. Is a family

isolated from the cancer community? There is also a worry of families whose culture looks down

on seeking support from outside the family unit. If families cannot engage or utilize the resources

within the community, their ability to reach bonadaptation may suffer. On the other hand, Ungar

(2011) shares that when resources in the environment are limited, an ecological understanding

can provide reasoning as to why these families are still resilient. The principle Typicality in

Ungar’s (2011) framework acknowledges that families may be in positions where the social

system around them is not adequate. Typicality allows ecological researchers to concentrate on

the unique functionality of behaviours and less on predetermined processes and outcomes we

often see illustrated in the family resilience research (Ungar, 2011).

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Comparably, researchers should be careful as to where they are placing blame. Patterson

(2012) explains public programming within communities often provide many resources that

families need in order to be resilient. If there is little support in the community and larger social

systems, how can we expect families to truly thrive through life’s adversities? Acknowledging

that some families are high risk is not always a result of a function within the family unit, but

rather, a reflection of substantial social inequalities that unfortunately exist. After reviewing this

literature, assessment of resources in the RMFSAA must ask: Does the family have access to

various cancer community supports such as online communities regardless of circumstances?

Every family, no matter the length of treatment, rural living, or physical presence should be able

to benefit from participating in their community.

These recommendation, although only based from one family’s perspective, sheds light on

the specific needs of families who are experiencing childhood cancer. Other studies have also

noted similar types of community support in healthcare as being vital for families’ resiliency. For

example, Ross (1979) found that, “Therapies that required a group setting had a positive effect

on families in all stages of illness” (p.381). Online support groups are also significantly helpful

for all family members as they have an opportunity to interact with others who are experiencing

similar events and emotions (McLaughlin et al., 2012). The literature also found that protection

from stress for the entire family relies on the supports and resources that parents engage in

(Overholser & Fritz, 1991; Patterson, Holm, & Gurney, 2004). These examples illustrate the

importance of assessing the presence, breadth and depth of the cancer community supports that

families engage in.

Hospitals, Childhood Cancer, and Further Research

Understanding the experiences of childhood cancer may expand the services that are

offered to families. From this, a greater sense of community has the ability to continually

develop. This type of support may lead to better supporting families in building their resilience

through this type of adversity. Many children’s hospitals provide ample opportunity for families

to connect with one another through programs and activities. Smaller city hospitals may not have

the same type of support for families while they are in the hospital or post treatment. Families

may not know where to turn as the medical team usually provides the first outlet to community

support and sense of culture for the family. Sloper (1996) reminds us that there is always a need

76

for greater establishment and prearrangement of services pertaining to social support and that

they be easily accessible.

Once Addie and Nathan were at home, she was unable to attend the specific group

meetings downtown that she enjoyed participating in. Fortunately, her and Nathan utilized online

cancer community groups in order to stay connected while giving and receiving emotional

support to other families. Every cancer treatment and experience is different. Some children and

their families may not be in treatment at the hospital long enough to embrace the sense of

community that is around them. This may lead to less time for families to benefit from the

resilient outcomes that can occur when participating within these communities. Along with this,

some extended family members may discourage exploring resources outside of their own family.

Studies that are exploratory in nature that implement interviews and group discussions, may be

developed to provide better insight into family members’ awareness of online cancer

communities. Mixed method instruments may be a useful as well. Survey tools may give a voice

to families who request more seclusion from a study due to cultural reasons or beyond. This may

also be a useful tool for collecting information from families in remission and or longer in the

hospital environment.

Healthcare professionals can be more proactive in making these online communities known

to families. Online communities that are developmentally appropriate for children can be

presented to the family and cancer type specific ones as well. Even if families are in the hospital

for a short time, they should be aware of all the resources that can aid and build upon their

resilience. Physical presence in the community should not place a family at a disadvantage.

There is also a sense of autonomy in these online sites, making it easier for those who are shy to

reach out to others for support and lend their support in a safe environment. In saying this,

families must first know about the existences of these online communities and how to navigate

them.

Reflection

If someone were to ask me how I felt during the process of this study, I would describe my

feelings as bittersweet. Unfortunately or fortunately, I was placed in a unique position as the

researcher for this study. In the preliminary stages of this research I would have never thought I

would be writing this as a sibling whose brother is affected by cancer. This sudden event in my

77

life left me dumbfounded. For a long time, it was difficult to continue with the research process.

Reading literature was unexpectedly difficult which led to feelings of simply not wanting to do

it. I decided to put my study down for a period of time. This let me feel what I needed to feel

while taking the time to support my family. Eventually, through much reflection and support

from my advisor, I realized that this study was going to be very different from any thoughts I had

in the beginning stages. I now had, and still do have, a unique perspective of cancer and its

narratives.

Addie and Noah slept in the same bed during their cancer experience. Addie and Noah both

noted that they thought this brought comfort and safety to Nathan. Nathan mentioned to her that

there were times when he was scared he was going to die or that no one would hear him if he

was dying. Nathan seemed slightly embarrassed as he shared this story with me. I assured

Nathan that it was okay to feel that way and proceeded to explain something that surprised me

about my brother. My twenty-three year old brother requested the same thing. My mother shared

with me that he too was scared about not waking up or being heard if he was in trouble. My

mother also felt that he was confused about all the changes that were happening to his body and

required that sense of maternal comforting. My brother’s request did surprise me; however,

hearing Nathan tell his story brought additional understanding to what my brother was going

through. It is upsetting to know that my brother may have felt embarrassed as well. It is

distressing to think that cancer can so much affect one’s dignity and wellbeing.

Similar to Nathan and Noah, my brother and I rarely discussed his cancer or treatment

when we spoke. My brother seemed to change the topic when I brought up certain questions

regarding his cancer. I desperately wanted to talk to him about it. My parents and I discussed his

treatment and cancer related events together. Perhaps this is what my brother and Nathan needed

from us as siblings. As much as I wanted to dive in and know everything, it was important for

him to get his ten minutes of sister time and to talk about everything but his illness. It could have

been their way of establishing normalcy in their lives. It was great that Noah and I respected their

wishes, as it was a way of providing them the support they needed at that time.

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There are events and feelings that Nathan, Addie, Noah and I have experienced that we

were able to safely disclose to one another due to the subculture and community that we are apart

of. Building a good rapport with this family came quite naturally because of my own experiences

with cancer. This was eye opening as I was experiencing the cancer subculture and sense of

connectedness at the same time as I was writing about it. Our conversations affected my own

resiliency and strength as I as able to give their family support while receiving support from

them. I will always hold close to my heart the stories and time spent together with this family.

Final thoughts

Addie, Nathan, and Noah’s unique experience with childhood cancer has provided an

opportunity to discover the ways in which families manage and cope together and as individuals.

As noted, each member of the family had their own perspective of the diagnosis, treatment, and

life in remission. From these findings and recommendations to the RMFSAA it can be concluded

that the childhood cancer community and culture should be recognized as a vital social system

that has the ability to promote family resilience. Understanding how this family engaged in this

community while developing a sense of harmony and balance in their functioning in light of

childhood cancer may lead healthcare professionals to better support the needs of the families in

their care. Furthermore, they can support these families by better understanding the hospital

environment they function in, the benefits of online cancer communities, and beyond.

Researchers and healthcare professionals should recognize that the environments they work

in are part of a family’s larger social system and that these environments may need to change,

not the family. When observing family resilience, we need to remember to decentre the family

from the equation to gain a better understanding of the resiliency being observed. From an

ecological lens, environments should be observed and or changed before examining or changing

precise family functioning. All families should have access to as many resources as possible.

Finally, the significant impact of quality environments in a family’s ecology is not always

evident in the family resilience research. We need to bridge the gap between ecological

resilience and family resilience as they impact each other’s field of work.

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Nathan completed his final chemotherapy maintenance treatment on September 28th, 2015.

He remains in remission.  

80

References Baltes, B.P. (1987). Theoretical propositions of life-span developmental psychology: On the

dynamics between growth and decline. Developmental Psychology, 23(5), 611-626.

Banerjee, A., Watt, L., Gulati, S., Sung, L., Dix, D., Klassen, R., & Klassen, A. (2011).

Cultural beliefs and coping strategies related to childhood cancer: the perceptions of

South Asian immigrant parents in Canada. Journal of Paediatric Oncology Nursing,

28(3), 169-178.

Becvar, D.S. (2013). The handbook of family resilience. New York, NY: Springer.

Black, K., & Lobo, M. (2008). A conceptual review of family resilience factors. Journal of

Family Nursing, 14(1), 33-55.

Bonanno, G. A. (2004). Loss, trauma, and human resilience: Have we underestimated the human

capacity to thrive after extremely aversive events? American Psychologist, 59(1), 20–28.

Bonanno, G.A., Papa, A., & O’Neil, K. (2001). Loss and human resilience. Applied

preventive Psychology, 10(3), 193-206.

Boyd, J.R., & Hunsberger, M. (1998). Chronically ill children coping with repeated

hospitalizations: their perceptions and suggested interventions. Journal of Paediatric

Nursing, 13(6), 330-342.

Bronfenbrenner, U. (1979). Ecological systems theory. Cambridge, MA: Harvard University

Press.

Carver, C. S., & Scheier, M.F. (1989). Assessing coping strategies: A theoretical based

approach. Journal of Personality and Social Psychology, 59(9), 267-283.

Coulson, N. S., & Greenwood, N. (2012). Families affected by childhood cancer: An analysis of

the provision of social support within online support groups. Child: Care, Health and

Development, 38(6), 870-877.

81

Creswell, J.W. (2007). Qualitative inquiry & research design: Choosing among five

approaches. (2nd ed.). Thousand Oaks: Sage Publications.

Creswell, J.W. (2012). Educational research: Planning, conducting and evaluating

quantitative and qualitative research. (4th ed.). Upper Saddle River, New Jersey:

Pearson Education.

Daher, M. (2012) Cultural beliefs and values in cancer patients. Annals of Oncology, 23(3), 66-

67.

Danielson, C.B., Hamel-Bissell, B., & Winstead-Fry, P. (1993). Families, health, & illness:

Perspective son coping and intervention. St Louis, MI: Mosby-Year Inc.

Dixon-Woods, M., Young, B., & Heney, D. (2005). Rethinking experiences with childhood

cancer: A multidisciplinary approach to chronic childhood illness. New York, NY: Open

University Press.

Donnon, T. (2010). Understanding how resiliency development influences adolescent

bullying and victimization. Canadian Journal of School Psychology, 25(1), 101-113.

Dyer, J. G., & McGuinness, T. M. (1996). Resilience: Analysis of the concept. Archives of

Psychiatric Nursing, 10(5), 276–282.

Earvolino-Ramirez, M. (2007). Resilience: A concept analysis. Nursing Form, 42(2), 73-81.

Fiese, B. H., Tomcho, T.J., Douglas, M., Josephs, K., Poltrock, S., & Baker, T. (2002). A review

of 50 years of research on naturally occurring family routines and rituals: Cause for

celebration? Journal of Family Psychology, 16(4), 381-390.

Flyvbjerg, B. (2011) Case Study. In: Denzin, N.K. & Lincoln, Y.S., ed. The sage handbook of

qualitative research (5th ed.). (301-316). Thousand Oaks, CA: Sage.

Garmezy, N. (1991). Resilience in children's adaptation to negative life events and stressed

environments. Pediatric Annals, 20(9), 459-460,463-466.

82

Garmezy, N. (1991). Resiliency and Vulnerability to adverse developmental outcomes associated

with poverty. American Behavioral Scientists, 34(4), 416-430.

Gerring, J. (2004). What is a case study and what is it good for? American Political Science

Review, 98(2), 341-354.

Goldstein, S. & Brooks, B.R. (2003). The handbook of resilience in children (2nd ed.). New

York, NY: Springer.

Harris, S. (2008). What is family diversity? Objective and interpretive approaches. Journal of

Family Issues, 29(11), 1407-1425.

Hartling, L. M. (2008). Strengthening resilience in a risky world: It's all about relationships.

Women & Therapy, 31(2-4), 51-70.

Hatch, J.A. (2002). Doing qualitative research in education settings. Albany, NY: state

University of New York Press.

Havermans, T. & Eiser, C. (1994). Siblings of a child with cancer. Child: Care, Health &

Development, 20(5), 309-322.

Hawley, D. R., & DeHaan, L. (1996). Toward a definition of family resilience: Integrating

life-span and family perspectives. Family Process, 35(3), 283–298.

Hensler, M.A., Katz, E.R., Winer, L., Berow, R., & Madan-Swain, A. (2013). Benefit

findings in fathers of childhood cancer survivors: A retrospective pilot study.

Journal of Paediatric Oncology Nursing, 30(3). 161-168.

Herrman, H., Steward, D.E., Diaz-Granados, N., Berger, E.L., Jackson, B., & Yuen, T. (2011).

What is resilience? Canadian Journal of Psychiatry, 56(5), 258-265.

Hildenbrand, A.K., Clawson, K.J., Alderfer, M.A., & Marsac, M.L. (2011). Coping with

pediatric cancer: Strategies employed by children and their parents to manage cancer-

related stressors during treatment. Journal of Paediatric Oncology Nursing, 28(6), 344-

354.

83

Houtzager, B.A., Grootenhuis, M.,A., Caron, H.N., & Last, B.F. (2004). Quality of life and

psychological adaptation in siblings of paediatric cancer patients, two years after

diagnosis. Psycho-Oncology, 13. 499–511.

Hymovich, D.P., & Roehnert, J.E. (1989). Psychosocial consequences of childhood

cancer. Oncology Nursing, 5(1), 56-62.

Johnson, J. L., & Wiechelt, S. A. (2004). Introduction to the special issue on resilience.

Substance Use and Misuse, 39(5), 657–670.

Knock, M.K., Michel, B.D., & Photos V. (2007). Single-case research designs. In: McKay D, ed.

Handbook of research methods in abnormal and clinical psychology (337-350).

Thousand Oaks, CA: Sage Publications

Lahteenmaki, P.M., Huodtila, J., Hinkka, S., & Salmi, T.T. (2002). Childhood cancer

patients at school. European Journal of Cancer, 38(9), 1227-1240.

Lietz, C. (2006). Uncovering stories of family resilience: A mixed methods study of

resilient families-part I. Families in Society, 87(4), 575–582.

McCubbin, H.I., & McCubbin, M.A. (1988) Typologies of resilient families: Emerging roles of

social class and ethnicity. Family Relations, 37(3), 247-254.

McCubbin, M., Balling, K., Possin, P., Frierdich, S., & Bryne, B. (2002). Family resiliency in

childhood cancer. Family Relations, 51(2), 103-111.

McCubbin, H.I., McCubbin, M.A., Thompson, A.I., Young, S., & Allen, C.T. (1997).

Families under stress: What makes them resilient. Journal of Family and Consumer

Science, 89(3), 2-11.

McLaughlin, M., Nam, Y., Gould, J., Pade, C., Meeske, K. A., Ruccione, K. S., & Fulk, J.

(2012). A videosharing social networking intervention for young adult cancer survivors.

Computers in Human Behaviour, 28(2), 631-64.

84

Meeske, K., Ruccione, K., Globe, D.R., & Stuber, M.L. (2001). Posttraumatic stress, quality of

life, and psychological distress in young adult survivors of childhood cancer. Oncology

Nursing Forum, 28(3), 481–489.

Moody, K., Meyer, M., Mancuso, C.A., Charlson, M., & Robbins, L. (2006). Exploring

concerns of childhood cancer. Support Care Cancer, 14(9), 960-966.

Orbuch, T.L., Parry, C., Chesler, M., Fritz, J., & Repetto, P. (2005). Parent-child relationship

and quality of life: Resilience among childhood cancer survivors. Family Relations, 54(2),

171-183.

Overholser, J.C. & Fritz, G.R. (1991). The impact of childhood cancer on the family.

Journal of Psychosocial oncology, 8(4), 71-85.

Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58(3),

233-246.

Patterson, J.M. (2002). Integrating Family resilience and family stress theory. Journal of

Marriage and Family, 64(2), 349-360.

Patterson, J.M., Holm, K.E., & Gurney, J.G. (2004). The Impact of childhood cancer on the

family: A qualitative analysis of strains, resources, and coping

behaviour. Psycho-Oncology, 13(6), 390-407.

Prchal, A., & Landolt, M.A. (2009). Psychological interventions with siblings of paediatric

cancer Patients: A systematic review. Psycho-Oncology,18(12), 1241-1251.

Richardson, G. E., Neiger, B., Jensen, S., & Kumpfer, K. (1990). The resiliency model. Health

Education, 21(6), 33–39.

Richardson, G. E. (2002). The metatheory of resilience and resiliency. Journal of Clinical

Psychology, 58(3), 307–321.

Rosenberg, A.R., Baker, S.K, Syrjala, K.L., Back, A.L., & Wolfe, J. (2013). Promoting

resilience among parents and caregivers of children with cancer. Journal of Palliative

Medicine, 16(6), 645-652.

85

Ross, J. W. (2008). Coping with childhood cancer. Social Work in Health Care, 4(4), 381-391.

Rutter, M. (1987). Psychosocial resilience and protective factors. American Journal of

Orthopsychiatry,57(3), 316–331.

Rutter, M. (1993). Resilience: some conceptual considerations. Journal of Adolescent Health,

14(8), 626-631.

Sargent, J.R., Sahler, O.J., Roghmann, K.J. Mulhern, R.K., Barbarian, O.A., Carpenter, P.J.,

Dolgin, M., & Zeltzer, L.K. (1995). Sibling adaptation to childhood cancer collaborative

study: siblings’ perceptions of the cancer experience. Journal of Paediatric Psychology,

20(2), 151–164.

Schwartz, C.L., Hobbie, W.L., Constine, L.S., & Ruccione, K.S. (1994). Survivors of

Childhood and Adolescent Cancer: A multidisciplinary approach. New York, NY:

Springer.

Sieminska, M.J, & Greszta, E. (2008). The family of a child with cancer-changes within the

family system. Polish Psychological Bulletin, 39(4), 192 -201.

Simon, J., Murphy, J., & Smith, S. (2005). Understanding and fostering family resilience. The

Family Journal, 13(4), 427-436.

Sloper, P. (1996). Needs and responses of parents following the diagnosis of childhood cancer.

Child: Care, Health and Development, 22(3), 187-202.

Sloper, P. (2000). Experiences and support needs of siblings of children with cancer. Health and

Social Care in the Community, 8(5), 298–306.

Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and parents'

psychological adjustment 1. Journal of Paediatric Psychology, 17(1), 15-31.

Stuber, M., Meeske, K., Gonzalez, S., Houskamp, B.M., & Pynoos, R. (1994). Post-

traumatic stress after childhood cancer: The role of appraisal. Psycho-Oncology, 3(4),

305–312.

86

Suen, L.W., Huang, H., & Lee, H. (2014) A comparison of convenience sampling and

purposive sampling. The Journal of Nursing, 61(3), 105-111.

Thomas, D.R. (2006). A general inductive approach for analyzing qualitative evaluation data.

American Journal of Evaluation, 27(2), 237-246.

Ungar, M. (2008). Putting resilience theory into action: Five principles for intervention. In L.

Liebenberg & M. Ungar (Eds.), Resilience in action (pp.17-38). Toronto: University of

Toronto Press.

Ungar, M. (2011). The social ecology of resilience: Addressing contextual and cultural

ambiguity of a nascent construct. American Journal of Orthopsychiatry, 81(1), 1-17.

Ungar, M. (2012). The social ecology of resilience: A handbook of theory and practice. New

york, NY: Springer.

Ungar, M. (2013). Resilience, trauma, context, and culture. Trauma, Violence, & Abuse, 14(3),

255-266.

Ungar, M., Gharzinour, M., & Richter, J. (2012). Annual research review: What is

resilience within the social ecology of human development? Journal of Child

Psychology and Psychiatry, 54(4), 348-366.

Volpe, R. (2002). The OECD children and youth at risk study and The BRIO case study

evaluation framework. In: Evans P, ed. Children and families at risk: New issues at

integrating services (149-165). Paris, France: OECD Publishers.

Walsh, F. (2003). Family Resilience: A framework for clinical practice. Family Process, 42(1),

1-18.

Woodgate, R.L. (2006). Life is never the same: Childhood cancer narratives. European

Journal of Cancer Care, 15(1), 8-18.

Woodgate, R.L. (2006). The importance of being ‘there’: Perspectives of social support by

adolescents with cancer. Journal of Paediatric Oncology Nursing, 23(3), 122-134.

87

Woodgate, R., Degner, L., & Yanofsky, R. (2003). A different perspective to approaching cancer

symptoms in children. Journal of Pain and Symptom Management, 26(3), 800-817.

Yeh, C.J., Kim, A.B., Pituc, S.T., & Atkins, M. (2008). Journal of Counselling Psychology,

55(1), 34-48.

Yin, F., Rong, J., & Lee, T. (2013). Resilience among caregivers of children with chronic

conditional concept analysis. Journal of Multidisciplinary Healthcare, 6, 323-333.

Yin, R.K. (1989). Case study research: Design and methods (5th ed.). Thousand Oaks, CA:

Sage Publications.

Yin, R.K. (2003). Case study research: Design and methods (3rd ed.). Los Angeles, CA: Sage

Publications.

Zebrack, B.J., Stuber, M.L., Meeske, K.A., Phipps, S., Krull, K.R., Liu, Q., Yasui, Y., Parry, C.,

Hamilton, R., Robinson, L.L., & Zeltzer, L.K. (2012). Perceived positive impact of cancer

among long-term survivors of childhood cancer: a report from the childhood cancer

survivor study. Psycho-Oncology, 21(6), 630-639.

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Appendix A Ethics Approval Letter

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Appendix B Interview Guide

The themes for the interviews will consist of resilience, coping, adaptation, family

dynamics, and resources. It should be noted that these questions are examples, as the language

will change depending on the age of the childhood cancer survivor and their siblings.

Questions for childhood cancer survivor

• What made you feel better while you had cancer? • Can you tell me about how your role at home and how that has changed now that you are

in remission? • What sorts of things did your family do to be happy during your treatment? • What advice would you give to another girl/boy who is in a similar situation?

Questions for siblings

• What helped you cope during your sibling’s illness? • How has your family changed now since he/she is in remission? • What has been the biggest change for you now that they are remission? • What do you think makes your family strong?

Questions for caregivers

• What helped you cope the most during your child’s treatment and also now in remission? • Can you tell me about the types of resources you were drawn to during your child’s

cancer treatment? • What kind of resources do you and or your family use today given that your child is now

in remission? • What kinds of things do you worry about the most now that your child is a survivor? • What has been the biggest change for your family now that your child is in remission? • If you could give advance to a family who has experienced a similar event, what would

you say?

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Appendix C Recruitment Tool

Facebook Post:

Hello,

I am doing a study on family resilience and childhood cancer survivorship. I am looking for a family whose

child is currently in remission. The child must be in remission for a minimum of a year and maximum of five years

and be between the ages of six and thirteen. In order to participate, your child must understand that they have been

treated for cancer and that their siblings understand this as well. If you know a family who is willing to share his or

her story contact me privately. Thank you.

Email Response:

Hello,

Thank you for your interest in my study. I am a graduate student at the University of Toronto in the

department of Developmental Psychology and Education. I am interested in inviting a family whose child is in

remission to share their story and experiences with me. I hope to learn about family resilience and the experiences of

childhood cancer survivorship. I would love the opportunity to discuss your experiences with you and your family

members.

I am looking for a child between the ages of six and thirteen who has been in remission between one and five

years. In order to participate, your child must understand that they have been treated for cancer and that their

siblings understand this as well. If you have any other questions or are interested please do not hesitate in contacting

me. If you like, we can set up a time to discuss the study further. Thank you so much!

Lisa-Marie Bianchi

lisamarie.bianchi@mail.utoronto.ca

(416) 951-2091

Thank You Email to Declined Families:

Hello,

Thank you so much for the interest in my study. Unfortunately at this time, a family has been selected for the

study. I thank you for willingness to share your story with me and volunteer you and your family’s time. It is greatly

appreciated. If you have any further questions or concerns, please contact me.

Thank you once again.

Lisa-Marie Bianchi

Lisamarie.bianchi@mail.utoronto.ca

(416) 951-2091

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Appendix D Adult Consent/ Information Form

A Study about Childhood Cancer survivorship and Family Resilience

Investigators:

Primary Investigator:

Lisa-Marie Bianchi

Department of Applied Psychology and Human Development

University of Toronto

Toronto, Ontario, Canada

(416) 951-2091

lisamarie.bianchi@mail.utoronto.ca

Thesis Supervisor:

Dr. Richard Volpe

Department of Applied Psychology and Human Development

University of Toronto

Toronto, Ontario, Canada

(416) 934-4500

Richard.volpe@utoronto.ca

You are invited to take part in this study on childhood cancer survivorship and family

resilience. I am doing this research for my thesis as part of my graduate studies. I hope to learn

what makes families strong through cancer and remission and how they adapt to life as a child

survives. I will be using insights from your family combined with research on cancer

survivorship to better understand processes of recovery and resilience. The study will only be

about your family. As a team, we will tell your story and share your experiences. You will be

involved in every step of my project. This involves, reviewing my notes to ensure they are true to

what you said and helping me understand your experiences. We will work together.

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What will happen during the study?

During the study, I will invite you and your immediate family members to discuss your

experiences of childhood cancer and life in remission. The discussion can take place within your

home or anywhere else you feel comfortable. I would appreciate the opportunity to talk to all

family members individually. If you or any other family members would like to be present for

each other’s discussion that is ok as well. We will set up times to talk that work for your and

your family. These discussions may last up to an hour and will happen once a week with each

family member. During the discussion we will talk about coping in the hospital and currently,

family, remission, and adapting to change in remission. With your permission, the discussion

will be audio-recorded using my laptop. Some example questions may be: What has been the

biggest change for your family now that your child is in remission? What kinds of things do you

worry about the most now that you/ your child is a survivor? I will also ask some demographic

background questions like age, education, martial status, and occupation.

I also invite you and your family members to share items from your experience with

childhood cancer and remission. These items may be pictures, arts and crafts, documents, toys,

or letters; anything that you would like to share and tell me about. With your permission, items

will be photographed and included in the study. If you would like to talk about some items

without having a picture taken of them that is ok as well. While we discuss the items, hand

written notes will be taken. You are also invited to read through your child’s consent form with

them to ensure they understand what being in the study means.

The results may be published in a scholarly journal as well as presented at academic conferences.

Are there any risks to doing the study

The risks involved in participating in this study are minimal. You may feel uncomfortable

or emotional when you discuss your experiences with cancer. You do not need to answer

questions that make you uncomfortable. You can take a break or withdraw from the study at

anytime.

Are there any benefits to doing the study?

The research gives you an outlet to share your story. There are a large number of childhood

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cancer survivors and their families today, and this research can help others understand the

experiences you and your family have had. There is little research done on why families are so

strong during times like this. This study will add to research that is beginning to understand

childhood cancer survivorship and resilience.

Reimbursement

Your family will be given a gift at the end of the study to say thank you for all your time.

Who will know what I said or did in the study?

You are participating in this study confidentially. I will not use you or your family

members names or any information that would allow you to be identified. Labels will be used in

the study such as survivor, mother, father, and sibling1 in addition to pseudonyms. No one but

my supervisor and me will know whether you participated in the study unless you choose to tell

them. All identifying information will be kept in a locked cabinet where only I will have access

to it. Audio-recorded interviews and files will be uploaded from my computer to a protected

space on the University of Toronto Server to ensure protection of the files. All files will be

deleted from my laptop right away. One year after the study has been completed, the files on the

University’s protected server will be destroyed. Any hand written or printed notes may be

maintained without identifying information up to five years. Although I will protect your privacy

as outlined above, if the law requires it, I will have to reveal certain personal information such as

child abuse.

What if I change my mind about being in the study?

Your participation in this study is voluntary. It is your choice if you would like to be in the

study. If you decide that you can no longer participate in the study, you may leave the study at

anytime. You can leave the study and I will destroy all of my notes or you may leave the study

and allow me to use the notes. Please note that you do not have to answer any questions you are

comfortable during the study.

How do I find out what was learned in the study?

I expect to have this study completed by approximately December 2015. You will know

everything that is in the study, as we will go over it in person, email, or by mail throughout the

study. If you would like a summary of the final results, we can set up a time were I could bring

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them to you to talk about it. If you would prefer to not meet in person, let me know how I can

send them to you by mail or email.

Questions about the study

If you have questions or need more information about the study itself, please contact me at

lisamarie.bianchi@mail.utoronto.ca, (416)-951-2091.

This study has been reviewed and approved by the Office of Research Ethics, University of

Toronto. If you have concerns or questions about your rights as a participant or about the

way the study is conducted please contact:

Email: ethics.review@utoronto.ca

Phone Number: (416) 946-3273

CONSENT

• I have read the information presented in the information letter about a study being conducted by Lisa-Marie Bianchi, of The University of Toronto.

• I have had the opportunity to ask questions about my involvement in this study and to receive additional details I requested.

• I understand that if I agree to participate in this study, I may leave the study at anytime.

• Once the study is finished, it is complete and I may no longer leave the study.

• I give parental consent for my child(ren) to participate

• My child understands that they have been treated for cancer and their siblings understand as well.

• I have been given a copy of this form.

• I agree to participant in this study.

Please circle

1. I agree that the interview can be audio recorded

…Yes

…No

2. I agree that any items or documents I share can be photographed for the study

….Yes

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….I will tell you which ones to photograph

….No

3. Would you like a summary of the results?

…Yes lets set up a time to meet

…No

...Yes send them to this email or mailing address

________________________________________________

… Lets discuss this at a later date

4. I give parental consent (permission) for my child(ren) to participant in the study

…Yes

…No

Signature:

Date:

Name of Participant (printed):

96

Appendix E Child Assent Form

A Study about Childhood Cancer survivorship and Family Resilience

Investigators:

Primary Investigator:

Lisa-Marie Bianchi

Department of Applied Psychology and Human Development

University of Toronto

Toronto, Ontario, Canada

(416) 951-2091

lisamarie.bianchi@mail.utoronto.ca

Thesis Supervisor:

Dr. Richard Volpe

Department of Applied Psychology and Human Development

University of Toronto

Toronto, Ontario, Canada

(416) 934-4500

Richard.volpe@utoronto.ca

You are invited to be in this project on childhood cancer survivorship. I am doing this

research as part of my education. I hope to learn what makes families strong through cancer and

remission and how life changes when you survive cancer. This project is only about your family.

We will work together so I can better understand you and your family’s experiences

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What will happen in the study?

During the project you and your family members are invited to talk about your experiences

with cancer and your life now. We will talk at your home or somewhere in your community. We

will talk by ourselves, but if you would like to choose someone to be with us, that is ok! Our talk

will last for about an hour. If you say its ok, I will record what we talk about on my computer to

make sure I remember everything later. I may ask you questions like What does your family do to

stay happy? Or What made you feel better when you had cancer?

I will also invite you and your family to share things with me from your experience with

cancer. It could be pictures, arts and crafts, toys, or anything you want to share. If you say its ok,

I will take photos of your things to put in my project. If you don’t want all your things to be

photographed in the study you can tell me which ones you want and which ones you don’t want.

When you share your things with me, I will take notes on a piece of paper.

Is there anything bad about it?

Sometimes you might feel uncomfortable talking about your family and cancer. If you ever

want to take a break or stop all together, just let me know. You do not have to answer any

question you don’t want to. You can stop being in the project at any time.

What is good about being in the project?

You get to share your story. You may feel good about sharing your story. There are lots of

children that get to go back to school and live a normal life after cancer. We can help and

understand the experiences you and your family had. Not a lot of people know what its like to

have cancer so this will help others with their projects too.

Gift

Your family will get a gift at the end of the project to say thank you for all your time.

Who will know what I said?

No one will know that you are in the project. I will not write your name anywhere on my

schoolwork. Only my teacher and myself will know you were in the study unless you tell others.

All the things you tell me will be locked in a cabinet and on my laptop. Only I know the

passwords. When we finish, I will throw away all the information. I might keep my hand written

notes, but your name will not be on it.

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Can I Stop?

You can decide if you want to be in the project. If you are in the project and don’t want to

be anymore, you can tell me you want to stop. You can also tell your Mom or Dad. Even if you

don’t want to answer some questions you can still be in the study.

What happens at the end?

I want to have my project done by April 2014. If you would like to see what I learned, we

can get together with your family and I can tell you. If you and your family cannot meet in

person, I will still email or mail them to your house. Your parents can tell you what I learned.

Questions about the study

If you have questions or want to know more need more please contact me at

lisamarie.bianchi@mail.utoronto.ca, (416)-951-2091. Your parents can also contact me with

your questions if you don’t want to.

• I have the form about a study being done by Lisa-Marie Bianchi, of The University of Toronto.

• I had time to ask questions about me being in the project.

• I can stop the project at anytime.

• I got to keep this form.

• I want to be in the project.

Please circle

1. I agree that the interview can be audio recorded

…Yes

…No

2. I agree that any items or documents I share can be photographed for the study

….Yes

….I will tell you which ones to photograph

….No

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3. Would you like to see what I learned?

…Yes

…No