001_ChildrensFunctioning

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Childrensfunctioningfollowing parental cancer

Annemieke Visser


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Ik was heel erg gesroken toen ikhoorde dat mijn mama kanker hat.Ik kan niet gelooven dat een mens het

zomaar kan krijgen. Ik baal er zo van,

ik kan iedereen wel immekaar slaan.

Ik heb een klub en als iemand van de

klub lagt dan ik nooit meelagen. Want

mijn mama heeft kanker en dat voelt

heel hart aan. Ik hou van je mama.

Egt waar mama.

(zoon, 8 jaar)


3/195

Er komen veelvremde mensen, datvind ik nooit zoleuk. Wand danword er veel overziek zijn gepraat.Dan ga ik gewoon

naar mijn ponys en

dan praat ik tegen

ze. Ik kan er niet

goed tegen en dan

word ik snel boos!

(dochter, 8 jaar)

Ik had moeite om

mijn concentratie

lang vast te houden,

maar school/hobbys

heb ik toch altijd

volgehouden, ook

als afleiding.

Echt lol hebben gaf

me vaak een

schuldgevoel.

(dochter 19 jaar)

Ik ben er geestelijk

sterker van gewor-

den, ik weet met

welke mensen ik

goed kan praten enik heb ontdekt dat ik

van alle dagen moet

genieten.

(dochter 17 jaar)

Omdat ik van alle

karweitjes en de

geestelijke druk heel

moe werd, deed ik

ook veel minder

leuke dingen zoals

sporten, uitgaan,

winkelen.

(dochter 17 jaar)

Ik moet me wat

stiller houden, ik

moet niet ergens

over doorzeuren.

(dochter, 14 jaar)

Lieve mama gaa

niet dood, ik wet dat

je heel veel pijn

hept. Lieve heer wilt

u mijn mama en derest weer beter

makem

(zoon, 9 jaar)

Ik dacht er steeds

aan, dus op school

kon ik niet zo goed

werken.

(dochter 11 jaar)

Mijn ouders willen

praten over de gevol-

gen van de ziekte,

maar daar heb ik niet

echt behoefte aan.

(dochter, 19 jaar)

Teveel informatie is

lang niet altijd goed.

Wat ik wou weten

wist ik.

(dochter,17 jaar)


4/195

Toen ik hoorden datze kangker hat iksnags gehuld ommama. Ik kan er welweer om huilen. Ikhoop dat ze nietdood gaat Ik hou

van mijn moeder. Ik

vint mijn moeder

ook zo knap dat ze

dit allemaal aan kan

... En nu worden dekuren veel zwader

en als ze dood gaat

kan ik me zelf ook

wel dood maken.

(zoon, 8 jaar)

Lieve mamaIk ben heel erg ver-

drietig geweest, en

bang dat je dood zou

gaan, maar ik ben

blij dat het nu goed

gaat. Ik vind het

moeilijk om er over

te praten.

(zoon, 9 jaar)

Maar ik en mama

hebben geluk lieve-

heersbeesjes. Geluk

lieveheers-beesje

zijn lieve beesjes dieje zorgen opnemen.

Zeg maar ik wil dit

kwijt... doe je dat

in 2 lieveheers-

beesjes

(dochter, 9 jaar)

Mama was toen

geoperert aan haar

boresten die waren

weg omdat die ziek

waren mama heeft

mij verteld dat het

kanker heete enmama hat 2 zakken

aan haar bed hangen

en ze deden BLUP

BLUP mama

kwam zaterdag thuis

met twee tassen aan

haar zeiden en dat

heet een dreen.

.....

Ik hoob dat papa

ooit beter word

Ik ben niet bang

voor de dood want

We heben het er overgehat.

(zoon, 9 jaar)

De vlinder zat op

een bloempje.

Dat was een

zonnebloempje.De vlinder zat vol

kleurepragt en

vlarderde naar een

ander bloempje.

(dochter, 9 jaar)

Maar nu denk iksoms nog wat er

gebeurt is, maar

meestal niet meer. Ik

brobeer er zo weinig

mogelijk aan te

denken.

(8-jarig meisje)


5/195

Elke ervaring is anders.

Ik zou wel willen praten,

maar voor mijn verwerking

praat ik liever met mensendie niet steeds dat had mijn

moeder ook zeggen.

(dochter, 19 jaar)


6/195

Childrensfunctioningfollowing parental cancer

Annemieke Visser


7/195

Visser, Annemieke

Childrens functioning following parental cancer

Thesis University of Groningen, the Netherlands With ref. With summary in Dutch.

ISBN 9077113509

Financial support for the study in this thesis was obtained from the Dutch Cancer Society

(grant number 2000-2333)

The printing of this thesis was supported by:

Dutch Cancer Society

University of Groningen

Northern Centre for Healthcare Research Groningen

Stichting Werkgroep Interne Oncologie

Comprehensive Cancer Centre North Netherlands

Amgen B.V. Breda

Cover design and lay out: Eelkje Eppenga

Printed by: Gildeprint

Copyright A. Visser, 2007

All right reserved


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RIJKSUNIVERSITEIT GRONINGEN

Childrens functioning

following parental cancer

Proefschrift

ter verkrijging van het doctoraat in de

Medische Wetenschappen

aan de Rijksuniversiteit Groningen

op gezag van de

Rector Magnificus, dr. F. Zwarts,

in het openbaar te verdedigen op

woensdag 4 april 2007

om 16.15 uur

door

Annemieke Visser

geboren op 21 oktober 1974

te Leeuwarden


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Promotores Prof. Dr. H.J. Hoekstra

Prof. Dr. W.T.A. van der Graaf

Copromotor Dr. J.E.H.M. Hoekstra-Weebers

Beoordelingscommissie Prof. Dr. J.W. Groothoff

Prof. Dr. J.L.N. Roodenburg

Prof. Dr. P.H.B. Willemse


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Voor mijn ouders

Paranimfen

Gea Huizinga

Andre Visser


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10


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11

Contents

9

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

The impact of parental cancer on children and the family:

a review of the literature

Cancer Treatment Reviews 2004; 30: 683-694 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Emotional and behavioural functioning of children of a parent diagnosed with

cancer: a cross informant perspective

Psycho-Oncology 2005; 14: 746-758 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Parental cancer: characteristics of parents as predictors for child functioning

Cancer, 2006; 106: 1178-1187 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81

Temperament as a predictor of internalizing and externalizing problems in

adolescent children of parents diagnosed with cancer

Supportive Care in Cancer, 2006 August, 30 (Epub ahead of print) . . . . . . . . . . . . . . . . . . . 105

Emotional and behavioural problems in children of parents recently diagnosed

with cancer: a longitudinal study

Acta Oncologica, 2007; 46: 67-76 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127

Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165

Samenvatting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173

Dankwoord . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

Articles related to the project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189

Northern Centre for Healthcare Research and previous dissertations . . . . . . . . . . 191

1

2

3

4

5

6

7

8


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12


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13

1Generalintroduction


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1Introduction

Various studies have shown that stressful events in a family can cause functioning

disorders in children.1 The consequences of divorce for children have been given

much attention2,3 as have parents with complaints of depression.4 Increasingly, there

is a focus on the consequences for a child of having a parent with a physical illness.

Lately there have been publications about the consequences for children of a par-

ent with multiple sclerosis,5,6 cerebrovascular accident,7 epilepsy,8 inflammatory

bowel disease9 and human immunodeficiency virus.10,11 The publications show that

these children run a higher risk of developing emotional and behavioural problems

than children of healthy parents. The problem risk, however, depends on various ill-

ness-related, individual and family variables.12-15

Chronic diseases can vary in the effects they have on children by variation in onset

(acute/gradual), course (progressive, constant or episodic/recurrent), outcome

(fatal/shortened life expectancy/no long-term consequences) and individual restric-

tions.15 Irrespective of the type of illness individual characteristics of parent and

child (age/gender) and family characteristics (parenting/family relationships) might

correlate with childrens functioning.12,13

So far no research has been performed in the Netherlands into the functioning of

children of a parent diagnosed with cancer. This thesis focuses on the consequences

of the diagnosis cancer and its treatment for the functioning of children. In this

chapter the medical and psychosocial consequences of the diagnosis and treatment

of cancer for the parent will be discussed. Using the system theory as model, the

possible influence of the event on the patient and also on other family members,

will be described. Finally an outline of this thesis is presented.

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Medical aspects of cancer

More than 72,000 people were diagnosed with cancer in the Netherlands in 2003.16

About 9000 of them have children living at home.17 Approximately sixty-five per-

cent of the patients in this age group is female. Breast cancer has the highest preva-

lence in women between 30 and 60 years of age. In men in the age range 30 to 44

years testicular cancer has the highest prevalence and between 45 and 60 years of

age the diagnosis lung cancer scores highest.16 The treatment of cancer can be sur-

gery, chemotherapy, radiotherapy, hormonal therapy, immunotherapy or a combina-

tion of these treatments. The treatment chosen depends on the type of cancer, the

phase of the illness and the general condition of the patient. The patient can expe-

rience physical problems such as fatigue, malaise, loss of appetite and pain com-

plaints as a consequence of the illness. The treatment, in particular in case of com-

bined treatment, can have a large impact on the patients functioning. An operation

may lead to permanent mutilation (amputation of the breast) or handicap (stoma).

Radiotherapy may cause fatigue, nausea, skin problems, diarrhoea and loss of hair,

depending on the radiation field. Chemotherapy often involves fatigue, loss of hair,

mucositis, nausea and vomiting. It can cause bone marrow damage in such a way

that the defence against infections decreases. In some cases the treatment may lead

to concentration problems and loss of memory. The first year after diagnosis is

often characterized by diagnostic examinations followed by one or more treatment

modalities. After this first year most of the acute side-effects associated with the

treatment received have disappeared. Results of previous research among patients

younger than 65 years of age show however that eight years after diagnosis these

patients still reported physical problems and limitations in social activities.18 A

report of the Netherlands Institute for Research on Health Care (NIVEL) showed

that 20-40% of the people were suffering from fatigue that seriously impedes daily

functioning years after they were diagnosed with cancer.19

Early diagnosis and improvements in treatment have increased the survival rate of

many patients in the past 30-35 years. In 1998 the mean five-year survival of all

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types of cancer and for all ages totals about 54% and this survival rate still increas-

es.20 The survival rate of cancer patients however strongly depends on the type of

cancer and the phase in which the cancer is diagnosed. The 5-years survival rate of

breast cancer patient in the Netherlands is approximately 80%.21 Young women

often have a more aggressive type of cancer than elderly women which makes the

survival rate in the first group lower.22 Men with testicular cancer have a five-year

survival rate of approximately 95%, whereas lung cancer patients have only a 18%

survival rate.21

Psychosocial consequences

Cancer has a high impact on the patients psychosocial functioning. A considerable

part of the patients confronted with cancer experience depression, anxiety and/or

stress.23,24 The percentage of patients having clinically elevated levels of psycholog-

ical distress appeared to be dependent on the type of cancer and varied from 13%

in testicular patients25 to 30% in gynaecological cancer patients and 43% in lung

cancer patients.24 Patients may lose trust in their bodies and experience uncertainty

about the future. Although most studies show that the seriousness of the problems

decreases over time,26 a considerable part of the patients (15-25%) still experiences

problems years after diagnosis.27,28 The capacity of persons to adapt to the illness

and its treatment, under similar circumstances, can vary individually. Factors such

as, personality, social support received, coping, but also illness related variables

such as time since diagnosis, treatment and phase of illness26,29-31 may affect the per-

sons adaptation capacity. Younger patients prove to have more psychosocial prob-

lems when having cancer than older patients.18,32,33 The confrontation with a serious

illnesses seems to cause a greater disruption of everyday lives of younger persons,

both occupationally and socially, than that of older persons. Parents with children

living at home worry about the consequences of the event for the children and may

experience feelings of imperfection as to their parental tasks.34 By far the most stud-

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ies have been performed on the psychological consequences of breast cancer in

women. Next to that, research often focuses on other homogeneous groups of can-

cer patients such as prostate and testicular cancer patients. Only few studies have

compared differences between male and female parents in the impact of the cancer

diagnosis. In general, no gender differences were found.23,24 If differences were

found these were attributed to confounding effects such as age or variation in

types of cancer and prognosis.35 There are indications that psychological distress

depends on the phase of the illness and the treatment the patient had undergone.

Highest distress was found in the acute phase of the illness and in people who had

received higher doses of chemotherapy and experienced more side-effects.36 Other

studies have found that a higher prevalence rate of depression was found among

patients in an advanced phase of cancer than in patients in the onset phase.26,37 On

the other hand there are also studies that found that illness-related characteristics

and psychosocial functioning were unrelated. 25,38

Family system theory

The diagnosis cancer not only has consequences for the patients life but also for

the other family members. In the system theory families are seen as hierarchically

organised systems, comprising subsystems (parent-child relationship, marital rela-

tionship). Every individual in a family is both a system in itself and a subsystem of

the family total. The hypothesis of this theory is that an event in the life of a mem-

ber of a family can also touch the lives and plans for the future of other family

members.

The spouse was found to experience as much stress as the patient23,39 and in the

spouse as well problems may continue to exist for a long time.40

Spouses of women

with breast cancer proved to be worried about the physical problems of their wives

and about sexual intimacy, about the unpredictability of the illness and the disrup-

tion of the personal and family life.41 In case of the patient being parent of young

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children living at home household tasks and child care often fall to the responsibil-

ity of the spouse.

For children the confrontation with cancer means that parents and family prove not

to be as inviolable as always thought. The illness often leads to many changes in

family life.42 In particular shortly after diagnosis and during treatment cancer will

be very prominently present in family life. In this phase the patient, but the healthy

parent as well, can be less accessible for children. Tasks and responsibilities with-

in the family may have to be rearranged. Children are confronted with the possibil-

ity of death of the parent. Various emotions such as fear, sorrow and anger may

arise.42 Children may experience the fear of losing the parent or of becoming ill

themselves.43 Anger may result from the feeling of injustice of the parent having

cancer, which disrupts family life, or from feeling abandoned now that all attention

focuses on the parent.44 On the other hand they may experience impotence when

facing the fact that they can do nothing for the parent in pain or the sick parent.

Children may have feelings of guilt, thinking that they are the cause of the illness

or they may feel responsible personally for the parent being quickly irritated or pay-

ing less attention to them.43 Children often find it very hard to explain their feelings

or to talk about their concerns related to the illness of their parent. Children do not

easily express their sorrow, fear, anger and worry verbally, they more often express

themselves by complaints of a physical nature, sleeplessness, withdrawal or aggres-

sive behaviour and irritability.43

Phase of illness

Rolland developed the family system health model to help explain family adapta-

tion to serious illness as a developmental process over time. This model hypothe-

sizes a variation in demands upon the family members in the various phases of the

illness (crisis, adaptation and terminal phase).15

The crisis phase, the period shortly

after diagnosis and during treatment is often seen as a stressful period.46 This phase

is characterized by an abrupt disruption of day-to-day life. Its life threatening char-

acter disrupts plans for the future. Acute anticipating decisions must be made about

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treatments and hospital admissions and the subsequent high impact on emotions

and practical affairs. The period of time and the intensity of the treatment and

prevalence of complications influence the restrictions a parent experiences and the

demands upon the family member.47

The adaptation phase comes after treatment. Sometimes the patients condition

improves in this phase, sometimes the cancer can lead to permanent restrictions and

family members will be confronted with changes in lifestyle and role patterns. In

case of a recurrence, a family is again confronted with often physically and emo-

tionally distressing treatments. Again fear and uncertainty will come up about the

effect of the treatment and often families have to face a worse prognosis.46

In the terminal phase, family members must come to terms with the death of the

patient, a loss that may have been more or less anticipated. The physical condition

of the patient worsens and in general family members will have to take on more

care tasks.46,48

Developmental phase of the family

The phases of the illness, according to Rolland, interact with the developmental

phase of the individual family member and with the family as a unity.15 These phas-

es are often characterized by means of the childrens age and the subsequent

changes in family life. Preschool children (2-5 yrs) are not yet familiar with the

concept of life and death. To these children the absence of the parent and the dis-

ruption of the family routine in particular have the largest impact. Children in this

age group moreover are totally dependent on the parental care. Families with chil-

dren in this age group face the task of continuation of care for the children. When

a parent is (temporarily) not capable of giving this care, ways and means to substi-

tute this care will have to be found.

Primary school children (6-11 yrs) are more self-reliant already and function more

independently from the parents. Children of this age have a social network of their

own outside the family, in school and with friends. One of the most important tasks

in this phase is the developing of social and cognitive skills. A parent with cancer

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to them mostly brings about worries about the day-to-day functioning of the fami-

ly and the consequences for their own life.49 Children in this age group may feel

guilty about causing the illness of their parent themselves or feel personally respon-

sible when the parent is quickly irritated or angry. They may think that cancer, just

as a cold, is contagious, and avoid contact with the parent.

Adolescents (12-18 yrs) are physically and psychologically breaking away from the

parent and developing their own identity. Adolescents are cognitively and emotion-

ally further developed than younger children and have a very good notion of the

concept of life and death and they consequently have more empathy with the par-

ent. Another characteristic of this phase is that in general adolescents are sooner

involved in taking over the tasks of the parent and the care of the siblings. These

tasks may conflict with the developmental task to break away from the parent and

to become more autonomous.42,49,50

To summarize, the consequence of the diagnosis cancer in a parent for children

depends on their age-related developmental needs and the possibilities to realise

them.51

The current study

Background

The first studies that focus on the consequences for children of a parent with can-

cer were published some thirty years ago.52,53Not until the past ten years there has

been any serious attention for this group of children. 23,47 Although in the United

States and in Canada various studies have been performed investigating the conse-

quences of the diagnosis cancer in a parent for children, in the Netherlands no

research has been performed in this field. This is the subject of this thesis. The con-

ceptual framework presented in Figure 1 hypothesizes first of all that the diagnosis

cancer in a parent has consequences for the functioning of children. And it hypoth-

esizes that the reason why some children experience more problems than others

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may correlate with the following factors: a)Illness-related variables. As described

earlier in this chapter the impact of the illness on children may depend on a variety

of illness-related characteristics. The period shortly after diagnosis is often hectic

and brings more uncertainty than the period after treatment when families try to

pick up their normal life. Parents may experience more restrictions when treat-

ment takes longer and is more intensive with more complications. In this situation

the demands on the other family members will increase as well. In case of recur-

rence a family is confronted again with the illness, the impact of treatment and the

often subsequent worse prognosis. b) Characteristics of the parent/spouse. Whether

it is the father or the mother having cancer can have different consequences for the

child. In Dutch families there often is a traditional role pattern between fathers and

mothers, the mother mainly taking care of the household tasks and the care for the

children.54 In case of the mother being diagnosed with cancer there will have to be

a restructuring of household and child care tasks. Next there is the hypothesis that

the gender of the parent interacts with the gender of the children. One study has

shown that children of the same gender as the diseased parent are more problem-

prone because they identify with this parent.55 Little research has been done into

other demographic variables such as age and educational level of the parent. The

quality of life a parent experiences as a result of illness and treatment, but also the

quality of life of the spouse are considered factors playing an important part in the

adaptation capacities of children.12,56,57 c) Characteristics of the child. As seen in the

previous paragraph the consequences of the diagnosis cancer in a parent can vary

per age group. Therefore the age factor is important and should be included.

Although most studies do not include the gender factor where emotional and behav-

ioural functioning after a stressful event is concerned, those who did so have shown

that girls are more vulnerable.23,58 Also, the differences between children in person-

ality might affect the way in which they handle stress.59,60

The relationship between

the functioning of children and the personality of children has not previously been

studied in children of a parent with cancer. d)Family structure. Being able to cope

with a high impact event may depend on the family structure, such as one or two

21


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parent families, number of children in a family and the childs position in the fam-

ily. The more family members the more the opportunities to distribute the practical-

ities of family life and the better the chance of family member support. e) Stressful

life events. Having experienced more negative life events may have a cumulative

effect and enlarge the chance of psychosocial problems.1 The hypothesis therefore

is that in situations where the parent is diagnosed with cancer and family members

face several recent stressful events the chance of problems in children is larger.

These stressful events can be related to the cancer, e.g. financial problems, or non-

related, such as illness of another family or loss of a friend.

Aim of the thesis

The main purposes of this thesis are:

1. To examine the prevalence of emotional and behavioural problems in primary

school (aged 4-11 years) and adolescent (aged 12-18 years) sons and daughters

of a parent diagnosed with cancer,

2. To investigate risk factors for the prevalence of problems in children, namely the

childs socio-demographic variables and temperament; ill parents and spouses

demographics and quality of life; illness-related variables, and experienced life

events.

Two studies were performed: a prospective, longitudinal study and a cross-section-

al study. The first study was executed among families with a parent recently diag-

nosed with cancer. Family members were asked to fill out a questionnaire three

times during the first year after diagnosis. The second study focused on families

one to five years after the cancer diagnosis in the parent. These families were asked

to fill out a questionnaire once. In both studies families were only approached when

the parent had an expected survival time of at least one year.

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Outline

Chapter 2 contains a review of all English language studies published between

1980 and 2004 on children of a parent diagnosed with cancer and on variables

affecting childrens functioning. Chapter 3 investigates the emotional and behav-

ioural functioning of Dutch children whose parent was diagnosed with cancer one

to five years previously by comparing them with norm group children. Information

on child functioning was obtained from multiple sources. The effects of the childs

age and gender, ill parents gender and illness related variables on childs function-

ing were examined. Attention is paid also to the extent to which different inform-

ants agree or differ in their perception of the functioning of children. The impact of

ill parents demographics, family characteristics, illness-related variables, as well as

both parents physical and mental functioning on the functioning of children, was

the focus ofchapter 4. Chapter 5 describes the effect of temperament on adoles-

cents psychosocial functioning, in addition to the effects of socio-demographics,

illness-related variables and number of negative life events children experienced

during the year prior to assessment. In chapter 6the prevalence of emotional and

behavioural problems in children during the first year after the parents cancer diag-

nosis is explored. Chapter 7discusses the most important findings of this thesis.

Methodological shortcomings and limitations are discussed and implications for

clinical practice and future research are offered. Chapters 8 and 9 summarize the

findings presented in the various chapters in English and Dutch, respectively.

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24

Figure 1: Conceptual model


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31

2The impact of parentalcancer on children

and the family:

a review of the literature

Annemieke Visser, Gea A Huizinga,

Winette TA van der Graaf, Harald J Hoekstra,

Josette EHM Hoekstra-Weebers

Both first authors contributed equally to this article

Cancer Treatment Reviews

2004; 30: 683-694


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2Abstract

Objective. Children of cancer patient may go through a distressing time. The aim of

this review was to survey present knowledge on the impact of parental cancer on

children and the family.

Design. Studies published between January 1980 March 2004 addressing emo-

tional, social, behavioural, cognitive and physical functioning of children of a par-

ent diagnosed with cancer, as well as the association with child, parental and famil-

ial variables were reviewed.

Results. Fifty-two studies were found. Emotional problems in primary school chil-

dren (11 years) were reported in several qualitative studies, but in only one quan-

titative study. Quantitative and qualitative studies reported anxiety and depression

in adolescents (12 years), in particular in adolescent daughters of ill mothers.

Quantitative studies generally showed no behavioural and social problems in pri-

mary school children and adolescents. One quantitative study found physical com-

plaints in primary school children. However, qualitative studies revealed behav-

ioural problems in primary school children and also described restrictions in cogni-

tive and physical functioning in children of all ages. The most consistent variables

related to child functioning appeared to be parental psychological functioning, mar-

ital satisfaction and family communication. Intervention studies directed to the

needs of children and their families reported positive effects.

Conclusion. While quantitative studies reported especially disturbed emotional

functioning, qualitative studies reported problems in all domains of child function-

ing. Well-designed studies are needed to gain more insight into the psychosocial

functioning of children of cancer patients to develop tailored care.

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Introduction

The impact of cancer on patients psychosocial functioning has received consider-

able attention in the literature during the past two decades. A growing number of

studies have addressed the psychosocial consequences for the spouse. However,

limited attention has been paid to the effects on children when a parent is diagnosed

with cancer. Confrontation with parental cancer can be very threatening for children

and may result in the development of psychosocial problems, such as anxiety, con-

fusion, sadness, anger, and feelings of uncertainty with respect to the outcome of

the illness. They may face many changes in daily family routines due to repeated

hospital admissions, hospital visits and care of the parent when at home.

This study reviews the current state of knowledge on psychosocial consequences for

children who have a parent diagnosed with cancer, and on variables that influence

these childrens functioning. The findings will be organized around the following

questions. Firstly, what is the impact of parental cancer on children, in terms of their

emotional, social, behavioural, cognitive and physical functioning? Secondly, is

there evidence that child, parental or familial variables are associated with the

functioning of children who have a parent diagnosed with cancer? Thirdly, are there

evidence-based interventions described which may help parents and children cope

with this major life event?

Methods

A comprehensive search of the literature published after 1980 was conducted, using

MEDLINE, EMBASE, PsycINFO, CINAHL, and CancerLit databases. The keywords

used in this search were: neoplasm, parental cancer, mothers and cancer, fathers

and cancer, parent-child-relations, child functioning, quality of life, children

and anxiety or depression, family functioning, and cancer and offspring. This

search was supplemented with manual searches of the reference lists of extracted arti-

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cles. The initial search yielded a total of 90 studies. Studies were excluded because it

were dissertation abstracts, they were not in English, reported on the consequences for

adult children of a parent with cancer, focussed on related topics (e.g., parenting), or

described the bereavement of children of parents who had died of cancer. Of studies

that dealt with pre-death as well as post-death adaptation of children, only pre-death

information was used. 1,2 The remaining 52 studies addressed the psychosocial func-

tioning of children aged 0-20 years of parents diagnosed with cancer, and comprised

quantitative, qualitative and intervention studies. Those studies were reviewed inde-

pendently by the first two authors. Because the methodological quality of studies

included may vary, the quality of the quantitative studies was assessed using the

guidelines of the Cochrane Library. Studies were considered as methodologically

stronger or poorer on the basis of: design, representativeness of the sample, relia-

bility of measurements, and use of control or norm groups. 3 The methodological qual-

ity of the qualitative studies was evaluated using procedures described by Lincoln and

Guba. 4,5 They suggested four criteria for establishing the trustworthiness of qualita-

tive data: credibility, dependability, confirmability and transferability.

To assess the methodological quality of the studies a standardized form was used for

data extraction. In case of disagreement consensus was achieved by discussion among

the authors.

Because quantitative and qualitative research approaches are methodologically differ-

ent, the results of studies will be reported separately. Results reported in the quantita-

tive studies reviewed are considered to be significant only when a level of p 0.05

was reached.

Results

Study characteristics

A total of 52 studies met the inclusion criteria. Sample size, informants and illness-

related information in the quantitative studies (n = 14) and in the qualitative studies

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(n = 18) are summarized in Tables 1 and 2, respectively. Mixed-method studies (n = 13)

are summarized in Table 3. Intervention-studies (n = 7) were described in the text only.

The aim of the studies differed: 31 studies reported on the psychosocial functioning

of children, 1,2,6-34 eight studies focused on family functioning or parent-child relation-

ships, 35-42 four on family communication, 43-46 one on the adolescents perceptions of

the role of school support, 47 and one on care-provision by children. 48 Seven papers

described intervention programs for families that were designed to help children cope

with their parents cancer. 49-55

In almost half of the studies (46%) only mother with breast cancer were included. In

the remaining studies an overrepresentation of mothers with breast cancer was found.

The majority of studies used a cross-sectional design with the exception of five stud-

ies 6-8,33,37 that used a longitudinal design.

Twenty studies used normative data for comparison purposes, 2,7-9,14,-23,35-38,41,42 while a

community sample of comparable subjects served as the control group in four studies.

12,13,32,39 Normative data comprised the scores of a large group of randomly selected

respondents on a standardized questionnaire. The manual of a questionnaire provided

those norm scores.

Data on child functioning and related variables were obtained from different inform-

ants: eighteen studies gathered information from the child only, 2,10,12,13,16,17,19,20,25-29,31,32,46-48

nine from one of the parents, 11,21,37-40,43-45 twelve studies from the child and parent(s),

1,7,8,14,15,18,22-24,33-35 four studies from both parents 6,30,36,42 and two studies from the child

and/or parent(s) and another closely related person. 9,41

Based on the above mentioned quality criteria nine of the 27 quantitative studies

and mixed-method studies 8,12,14,17-19,23,34,37 were qualified as methodologically stronger

studies. Eighteen of the 30 qualitative and mixed-method studies were qualified as

trustworthy.6,10,11,17-19,23,24,29-31,33,40,43,44,46-48

It appeared that some mixed-method studies

have a strong qualitative and a poor quantitative part or vice versa. The references

of methodologically stronger (parts of) studies are presented in the text in bold and

the other references in italic.

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The reviewed studies reported on children of various ages. Although a few studies

presented the results without making a distinction between age groups, most stud-

ies focused on specific age groups or presented the results for primary school

(about 6-11 years) and adolescent children (about 12-18 years) separately.

Therefore, this classification will be used in this review. Four qualitative studies

examined the functioning of pre-school children, 6,30,40,42 but generally did not

describe the results for pre-school children separately.

Furthermore, it may be argued that the experience of a stressful life event may have

also positive consequences (e.g., deepening of relationships). Most studies have

focused on the negative impact of parental cancer, but if positive consequences

were reported by studies, these will be described.

The impact of parental cancer on the psychosocial functioning of children

Emotional functioning. Most quantitative studies reported that primary school

children scored within the normal range on emotional problems, 8,15,18,20,21 while

some other studies found increased scores. 12,14 With regard to adolescents, most

studies reported more emotional problems in adolescents when compared to con-

trol or norm groups. 2,8,12,13,14,15,18 Yet, there were also a few studies that found simi-

lar emotional problems in adolescents than found in norm groups. 16,20,21 Stress-

response symptoms (avoidance and intrusive thoughts) were also observed in pri-

mary school and adolescent children. 18 Qualitative studies showed that primary

school children reported fear of cancer symptoms, side effects of treatment, the

parent dying and of the vulnerability of the well parent. They reported feelings of

guilt, because they considered themselves responsible for the occurrence of their

parents cancer, for their parents anger, withdrawal, or lack of affection. Besides,

they were distressed about loss of their usual activities and loss of contact with

their peers. 25 Adolescent daughters were found to have increased psychosomatic

symptoms and mood disturbances. They also reported fear of developing breast

cancer themselves, fear of relapse, fear of losing their mother, anger, and guilt,

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39/195


40/195


41/195

because they wished to continue their own lives. 26-28,29 Adolescents were afraid of

being left alone with their ill parent, because they were worried about making

mistakes in the care of this parent. 48

Social functioning. Quantitative studies did not show any differences in social

competence (skills in social contacts and leisure activities) between children of

parents with cancer and a norm group. 14,20,21 Qualitative studies focused mainly on

relationships of children with family members and friends. Primary school chil-

dren reported to have no one to help them cope with the situation. 10 Adolescents

reported to have more people (parent, school nurse or counsellor, teacher) to rely

on than younger children. 26 One study found that adolescents perceived the home

environment as supportive, 48 while another found that adolescent daughters had a

need for more support from inside their family. 27 School was an important source

of support for adolescents 47 and served as a haven away from care-provision. 48

Behavioural functioning. Quantitative studies using self-report data from young-

sters 2,10,29 and/or data from parents 8,9,14,20,21 did not show any differences in the preva-

lence of behavioural problems (e.g., externalizing: delinquency or aggression)

between primary school or adolescent children of cancer patients and norm group

children. Qualitative studies reported various results. Increased crying, clinging and

difficulty in sleeping were found in pre-school children. 30 Primary school chil-

drens behavioural reactions included a change in the intensity of talking, trying to

distance themselves from cancer, increased checking on how the ill mother was

doing, taking over the mothering role, seeking physical closeness or withdrawal, 11

having increased conflicts with parents, siblings and peers, 25 and paying more than

usual attention to the mothers needs and wanting to support her. 10

Cognitive functioning and school performance. Qualitative studies reported that

primary school children were unable to concentrate and complete assignments at

school. 25 Some adolescents showed a decline in school performance and attendance

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(truancy, coming late or leaving earlier to pick up siblings), 13,27,28 while other ado-

lescents functioned better at school. 48

Physical symptoms. According to one quantitative and two qualitative studies par-

ents reported somatic symptoms, such as sleeping difficulties and headaches, in

their pre-school 30 and primary school children. 6,15 Primary school children them-

selves also reported sleeping problems. 25 Adolescent daughters indicated that they

suffered from a variety of symptoms, including headaches, abdominal pain, dizzi-

ness, sleeping problems and loss of appetite. 27,28 Youngsters who were caring for

their ill parent reported fatigue. 48

Relationships between study variables and child functioning

Child variables

Age. Quantitative studies found more emotional problems in adolescents than in

primary school children. 2,8,18,26. Primary school children, however, showed more

stress-response symptoms than adolescents. 18 Qualitative studies documented that

pre-school children were reacting on nonverbal and stressful behaviour of the par-

ent and separation from the mother. 6 Primary school children were more affected

by the visible symptoms of the illness and side effects of treatment, such as vomit-

ing and loss of hair. 25,31 Complications and emergency hospitalisations were espe-

cially disturbing for primary school children. 25 Adolescents were more preoccupied

with the well being of their parent 15 and were more inclined to talk openly about

their thoughts and feelings about cancer than primary school children. 10

Gender. The methodologically stronger quantitative studies found more emotional

problems in adolescent daughters of mothers diagnosed with cancer than in daugh-

ters of fathers with cancer, or in sons of mothers or fathers diagnosed with cancer.

8,18,19 Adolescent daughters reported also the highest scores on aggressive behaviour,

independent of the ill parents gender. 8 Otherwise, the methodologically poorer

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studies found no gender differences for emotional problems, behavioural problems

and social competence, 21 or found higher anxiety-scores and lower self-esteem in

adolescent sons than in adolescent daughters. 13,22

Parental variables

Illness-related variables. Quantitative studies found no relationship between child

functioning and type and stage of cancer, time since diagnosis, 8,18 illness severity

and treatment modalities. 20 Children whose parents suffered from advanced stage

disease and a poor prognosis seemed to perceive their parents illness as more seri-

ous and stressful, and avoided thinking about their parents cancer. 17,18 These chil-

dren were reported to have fewer externalizing symptoms than children of parents

with non-advanced stage illness. 34 Qualitative studies revealed a negative impact

on the mother-child relationship when the mother had a poor prognosis, extensive

surgery, and suffered more side-effects from radiotherapy and chemotherapy. 35,41

The period of diagnosis and treatment, and when the illness situation decreased

seemed to be most difficult for primary school and adolescent children, because of

the uncertainty and the diminished availability of their mother. 6,11,27,33,46

Five studies paid attention to the impact of gender-specific cancers or hereditary

risks on children. One quantitative study found no differences in anxiety/depression

and stress-response symptoms between daughters of mothers who had gender-spe-

cific cancer (breast or gynaecological cancer) and daughters of mothers who had

non-gender-specific cancer. 18 Adolescents who worried about their own chances of

developing cancer, however, showed more withdrawal and somatic problems. 16

Qualitative studies reported that primary school daughters were aware of their vul-

nerability when their mother and grandmother had breast cancer. 25 Adolescent

daughters showed increased high-risk behaviours, such as delinquent behaviour

and the use of drugs, as a consequence of fear of getting the disease themselves.28

However, another study reported that most adolescent daughters knew that they

were at risk for breast cancer, but did not perceive this as a continuous threat. 6

Parent psychological functioning. Quantitative studies found that better psycholog-

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ical functioning of the ill parent was associated with better psychological function-

ing of the child, 15,20,21,22 a higher self-esteem, 23 and a better mother-child relation-

ship. 41 However, another study found no relationship between the parents psycho-

logical functioning and that of the child. 18 Worse psychological functioning of the

ill parent was also related to positive effects: adolescent children of more anxious

and distressed mothers were found to be socially more competent. 20

Family variables

Parent-child relationship. Results of the qualitative studies concerning the conse-

quences of the parents illness on the parent-child relationship varied within stud-

ies from an improvement in the parent-child relationship, to no change, to increased

conflicts. 6,13,25,41 Adolescents who had a poor relationship with the well parent or

with both parents before the diagnosis found it more difficult to adapt to the illness.

25,26 Contradictory results were found for the effect of the gender of the child. Two

studies showed that mothers experienced deterioration in the relationship with their

daughters, but an improvement in the relationship with their sons, 40,41 while in

another study parents indicated that they talked more sensitively with their daugh-

ters than with their sons. 6

Marital functioning. Greater marital satisfaction had a positive impact on the

childs psychological functioning, on family functioning, family coping, 35,36,37,38

quality of the parent-child relationship 36,37,38 and on the adolescents self-esteem. 35

Family structure. Quantitative studies found that primary school children of single

mothers had lower scores on global self-esteem and social acceptance, and they

seemed to have higher scores on behavioural problems 7and stress levels 6 than chil-

dren of two-parent families. Results obtained on adolescents of single mothers,

however, showed that the quality of the parent-child relationship and self-esteem

were equal to those in adolescents living in two-parent families.7

Adolescents from

two-parent families and those with siblings had less involvement in the illness

process than adolescents from single-parent families or only children, and their nor-

mal daily lives were less disrupted. 42,48

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Changes in role. Qualitative studies revealed that although parents attempted to

continue the daily life of their children as far as possible, 24,33 the illness blurred the

roles in families. 6,33,44 Adolescents had to do more household chores 1,13,48 and per-

ceived increased care responsibilities for siblings and the ill parent. 13,48 Absence of

home health care was an additional burden for them. 24 Care-provision duties

depended on the severity of the illness and the number of available care-providers,

and were experienced as hard work, but also as gratifying. 48 The way the new roles

were divided was important: tasks performed voluntarily, instead of being com-

pelled, had significant positive effects in terms of less role strain and role conflicts,

which resulted in better family functioning. 42 Care for the ill parent provided by

daughters had a more intimate nature than that provided by sons. 6 Taking care

caused anxiety in adolescent daughters, because they were afraid that this changed

role would definitively alter their relationship with their mothers, 28 and also in ado-

lescent sons. 13

Family functioning. Quantitative studies reported that a high number of illness-

related demands had a negative effect on family functioning. 35,36,38 In families that

were functioning fairly well, parents and/or children functioned better, 24,32,35,38 and

the parent-child relationship was better. 35,36,38 Families with adolescents only were

more organised than families with primary school children or children of both age-

groups; they experienced more family cohesion, less family and role conflicts, and

less role strain. 42

Family communication. Qualitative studies showed that communication about the ill-

ness was of particular concern to parents. It was difficult for parents to decide what

to tell their children about the illness, when and by whom. 30,44 It was a stressful task

for parents to talk with the children, because they lacked knowledge about the illness

themselves and were afraid they could not maintain emotional control in front of the

children.30

The type of information children received varied.1,22,43,44,45

Pre-school chil-

dren were given simple information about the illness. Parents avoid to use words like

cancer and dying. 6 Primary school children were generally informed about the situ-

ation, 6but often appeared to be misinformed or had misconceptions about their par-

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ents illness and treatment, probably due to their limited cognitive development. 25

Adolescent children were informed more extensively than younger children. 6,45 The

increased cognitive capacities of adolescents allowed them to understand the impli-

cations of cancer, and many of them searched for information about cancer and treat-

ment in addition to that received from their parents. 26 In spite of this, another study

reported that adolescents had a need for more information and support from family

members and persons outside of the family. 46 Generally, children of all ages were

protected from negative test results, such as new lumps, 6 although adolescents tend-

ed to be informed about the possibility of death when the parent became terminally

ill. 1 Reasons to withhold information from children were that parents wished to avoid

childrens questions about cancer and death, and belief that children were too young

to understand. 6,43 Parents tried to protect their children from fear and worries,

although they perceived at the same time that they communicated openly with their

children about the disease. 40,43 Exchanging information with their children and talk-

ing with each other served as a means of decreasing distress. 43,44

Whereas one study did not find any relationship between family communication

and child functioning, 22 other studies demonstrated that poor family communica-

tion or non-communication increased the risk of problems in children, 25,28 and in the

parent-child relationship. 13

Informant agreement

Parental agreement. Fathers observed similar levels of anxiety/depression or

aggression in their children as compared to mothers. 8 Ill parents and partners

agreed the most about adolescentsexternalizing symptoms and the least about chil-

drens social competence. 14

Intergenerational agreement. Parents and children agreed moderately on childrens

emotional and behavioural functioning, particularly regarding externalizing behav-

iour. 14 Self-reports of children revealed more emotional and behavioural problems

than parents-reports. 8,9 Problems of the child may escape the parents attention

because children hide their emotions. 15,21

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Intervention studies

Intervention studies were aimed to help family members to communicate more

openly with each other and to increase their coping strategies. 49-55 All papers report-

ed positive effects of the interventions, including less anxiety and more open com-

munication.

Discussion

The first aim of this study was to examine the impact of parental cancer on chil-

dren, in terms of emotional, social and behavioural, cognitive and physical func-

tioning. The majority of quantitative studies were aimed at evaluating the emotion-

al functioning of children who have a parent with cancer. Results for primary

school children were inconsistent, varying from more emotional problems to equal

functioning in comparison with their peers. Nearly all studies reported that adoles-

cents had more emotional problems than found in the norm group. Adolescents may

have an increased vulnerability because of the conflicting demands of on the one

hand the developmental task to separate from the family and the need to direct to

relationships outside the family, but on the other hand the confrontation with the

practical, psychological and social tasks demanded by the illness. 2,6,26

In the domain of social and behavioural functioning, primary school children and

adolescents were not found to differ from control or norm group peers. It might be

that children were doing well on these domains. Otherwise, children may try to pro-

tect the parent by showing less behavioural problems. None of the quantitative

studies focused on cognitive functioning, and only one on physical functioning,

describing sleeplessness and headaches.

The qualitative studies gave a different view on the four domains of primary school

childrens and adolescents functioning. In the emotional domain, fear, mood distur-

bances, feelings of distress and guilt were described. Besides, several qualitative stud-

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ies found a variety of behavioural, cognitive and/or physical problems in children.

The second aim of this study was to examine relationships between child, parental

and familial variables and child functioning. It may be assumed that children

respond to parental cancer in various ways. Firstly, the reactions of children may be

affected by their developmental level. Although studies reporting on children

between the 0 and 20 years of age were included, results on the functioning of pre-

school-children were limited or were not described separately from other age

groups. This means that no general pronouncement can be made about the impact

of parental cancer on pre-school children. Comparison with other age groups

showed that adolescents were reported to have more emotional problems than pri-

mary school children. This may be due to their cognitive capabilities, as a result of

which adolescents are more aware of the consequences of the illness. 18 Particularly,

adolescent daughters of mothers with cancer seemed vulnerable: they had more

emotional problems than adolescent sons in general and adolescent daughters of

fathers with cancer. Probably, adolescent daughters are more vulnerable due to the

identification with their mothers and increased role responsibilities. 18,56

Emotional problems may be affected by the childs perceptions of the seriousness

and stressfulness of the illness and a poor prognosis rather than other objective dis-

ease characteristics (such as type, stage, and time since diagnosis).

The majority of the studies reviewed found a positive relationship between the psy-

chological functioning of the parent and the child, which is in line with the results

of a meta-analysis on maternal depression and childs functioning. 57 On family

level, open communication between the family members and greater marital satis-

faction between the parents had a positive effect on child functioning. Varying

results were found regarding the effects of parent-child relationships, changes in

role patterns within the family, family structure and family functioning on chil-

drens functioning.

The non-uniformity in results may be due to the heterogeneity in research questions,

methodology, illness-related characteristics and different informant perspectives.

The majority of studies evaluated the psychosocial functioning of the child, but in

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some studies family functioning, family communication, school support or care-

provision played a central role.

Quantitative studies used a variety of questionnaires to measure psychosocial func-

tioning in children (e.g., internalizing problems versus anxiety alone). However, it

may be questioned whether the questionnaires used were sensitive enough to meas-

ure the specific problems children encounter when a parent has cancer.

A number of studies had fewer than 50 respondents, which may have lead to type

II errors. Moreover, in the majority of studies, cross-sectional data were described,

which means that no conclusions could be drawn about causal relationships.

Furthermore, over half of the studies did not give any information about the

response rate, or the response rate was low. This raises the question as to whether

the populations can be considered representative of all families in which a parent

has cancer.

In a number of qualitative studies the methods of analysis were described only

briefly. All qualitative studies used (semi)structured interviews, but it remained

unclear what had exactly been performed, which limits the credibility, dependabil-

ity and confirmability of those studies.

Many of the studies (quantitative and qualitative) focused specifically on patients

with one certain type (e.g., breast cancer) or stage of cancer (stage I/II or terminal

disease), whereas other studies included various diagnoses and stages of disease. In

addition, the time since diagnosis varied widely, from a few days to nine years. A

number of studies included children of considerably different ages, but did not

make any distinctions regarding age or developmental level when presenting the

results. This may have limited the generalizability and transferability of the results.

Different informants (parent/child) did not always have the same perceptions of

child functioning. Parents as a whole tended to show a higher level of agreement

on behavioural problems than on emotional problems. This may not be surprising

because behavioural problems are easier to detect.

Finally, the third aim of this study was to examine whether evidence-based inter-

ventions are described for families in this situation. Though the reviewed interven-

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tion studies reported all positive outcomes, these results were based on impressions

of the facilitators, verbal feedback from participants and on self-constructed, non-

validated questionnaires. The effectiveness of these interventions has not been

examined in randomised controlled trials and may therefore not be considered as

evidence-based.

Future directions

In view of the diversity of results, as shown in this extensive review, it is extreme-

ly important to perform higher quality research into the psychosocial functioning of

children who have a parent with cancer. Quantitative studies with large numbers of

respondents have greater power. In addition, larger samples offer the opportunity to

compare subgroups, for example differences between children whose parent has a

good prognosis and children whose parent has a poor prognosis. Longitudinal stud-

ies are needed to gain more insight into the causal relationships between child func-

tioning and the above-mentioned variables and into the long-term consequences.

The majority of the studies were performed among families of breast cancer

patients. Although breast cancer is the most common disease in parents with chil-

dren, more information is needed to gain insight into the functioning of children of

fathers diagnosed with cancer. Further research is also needed about the function-

ing of pre-school children in this situation.

It is important to develop and validate an instrument that specifically measures the

psychosocial functioning of children whose parents were diagnosed with cancer.

With respect to the differences in outcomes between quantitative and qualitative

studies, it seems advisable to combine these study methods (method triangulation).

For instance, the results of a large quantitative study on child functioning can gain

in strength when combined with the results of a qualitative study with in-depth

interviews with those children (and parents) reporting extremely high or low levels

of functioning.

There is no golden standard regarding who is the best informant of child function-

ing. It is therefore worthwhile to triangulate perspectives, not only from the parents

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and children, but also from a significant other (such as schoolteachers).

Some children may be more vulnerable than others. It is therefore important to

identify factors that may act as facilitators or as barriers. Consequently, studies are

needed to establish the role of child characteristics (such as gender, developmental

phase, personality), parental characteristics (such as psychological functioning,

marital satisfaction, up-bringing style), family characteristics (such as parent-child

communication, role changes within the family) and illness and treatment related

variables. A theoretical model can serve as a guide to gain insight into the complex-

ity of child functioning within families confronted with cancer. With more struc-

tured and well-grounded knowledge appropriate interventions may be developed

for children and families at risk.

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