PROFORMA FOR REGISTRATION OF SUBJECTS FOR

DISSERTATION

DISSERTATION PROPOSAL

“A STUDY TO ASSESS THE STRESS AND COPING

STRATEGIES AMONG PARENTS OF THALASSEMIA CHILDREN AT

VANIVILAS HOSPITAL IN BANGALORE WITH VIEW TO

DEVELOPE AN INFORMATION BOOKLET ON STRESS REDUCTION

STRATEGIES”.

SUBMITTED BY,

MR. RAMBABU . D.

I YEAR M.Sc, NURSING

(PSYCHIATRIC NURSING)

VARALAKSHMI COLLEGE OF NURSING,

BANGALORE – 560 057

RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES BANGALORE, KARNATAKA

PROFORMA FOR REGISTRATION OF SUBJECTS FOR DISSERTATION

1.

NAME OF THE

CANDIDATE AND

ADDRESS

MR. RAMBABU.D.

I YEAR M.Sc, NURSING

VARALAKSHMI COLLEGE OF NURSING,

19, KIADB ROAD, CHOKKASANDRA,

T.DASARAHALLI, BANGALORE-57.

2.NAME OF THE

INSTITUTION VARALAKSHMI COLLEGE OF NURSING.

T.DASARAHALLI, BANGALORE-57.

3. COURSE OF STUDY

AND SUBJECT

DEGREE OF MASTER OF NURSING

PSYCHIATRIC NURSING

4.DATE OF

ADMISSION TO

COURSE

3O- 06- 2008

5. TITLE OF THE TOPIC

THE STRESS AND COPING STRATEGIES

AMONG PARENTS OF THALASSEMIA

CHILDREN.

6. BRIEF RESUME OF THE INTENDED WORKINTRODUCTION

Research on the relationship between stress, social support and coping has grown

substantially in recent years. This has been fueled by a growing interest in the social

psychological and familial aspects of the experience of illness. Stress has been broadly

defined as “virtually every from of disturbance of equilibrium”. Yet critics of the event

initiated model of stress are careful to note that a complete state of equilibrium rarely if

ever exist prior to the emergence of a particular stressor .Most stress theorists assume a

direct inverse correlation between stress and the availability of social support; difficulties,

financial problems and adverse social consequences.1

The family experiences, perceives, and responds to the illness can affect they

assume that social support enhances the coping process and reduce stress. The nature of

stress has been shown to span over several aspects of family life such as daily care

demands, emotional distress, interpersonal the social-psychological adjustment of the

family member as well as the course and outcome of the disease.

Coping is the cognitive and behavioral efforts to manage specific external and

internal demands appraised as taxing or exceeding the resources of the individual. A

distinction that is often made in coping literature is between active and avoidant coping

strategies are either behavioral or psychological responses designed to change the nature

of the stressor it self or how one thinks about it. Whereas avoidant coping strategies lead

people into activities or mental states that keep them from directly addressing stressful

events. Fathers most commonly coped by emotional withdrawal whereas mothers coped

through emotional release.2

Every year, about 8 million babies worldwide are born with gene-related birth

defect. Blood disorders (such as sickle cell disease and thalassemia) more then 307,000

births worldwide yearly. More then 3 million children die of genetic birth defects by age

of 5 years. Thalassemia is a genetic blood disorder that affects person’s ability to produce

hemoglobin. It comes from the Greek word “thalasanemia” which means “anemia by the

sea”. It was also known as Mediterranean Anemia.3

Thalassemia occurs most frequently in people of Mediterranean, Middle Eastern,

African, Italian, Greek, Thailand, Asian, Chinese and Indian.4

Through the tribal communities constitute a major part of India; unfortunately they

are highly vulnerable to many hereditary disorders causing high degree of morbidity and

mortality. Every year 10,000 children with thalassemia are born in India, which

constitutes 10% of the total number in the world, and 1 out of every 8 carriers of

thalassemia worldwide lives in India.5

6.1 NEED FOR THE STUDY

Stress is a complex, dynamic process of interaction between a person and his or

her, it is war one reacts person mentally and emotionally to the various conditions. Stress

was divided in to several subclasses based on the type of problems faced by respondents

i.e. worried stress, family related stress, relationship related stress, financial stress,

personal stress, and bereavement stress.

The diagnosis of this chronic disease is stress including that the parents develop a

variety of coping strategies in response to that stress. Coping has been defined as “The

things people do in their own behalf to avoid the stress that would otherwise result from

problematic condition of life.” Coping strategies was divided into subcategories i.e.

proactive, reflective, strategic, preventive, and avoidance coping. 6

To day, an Increasing number of children are admitted to hospitals with treatment

regimens that require the families’ constant vigilance and supportive care. Serious illness

and disability often have a devastating impact on family life. Yet, families lack a

psychosocial map for the experience of the illness. Most of the literature on the impact of

chronic illness has focused on mothers. Mothers are often neurotic, depressed,

introverted, lacking in self confidence, fear and helplessness, confusion, anger, anxiety,

and generally more distressed than either fathers of chronically illness children or

mothers of healthy controls.2

The participants were 46 African children (24girls, 22boys; mean

age=11.96years;age range: 8 to 17 years) from the outpatient sickle cell clinics at the

university of north Carolina Hospital, and Duke university Medical Center.Sixty-seven

percent of the children were diagnosed with sickle cell anemia, 16% had hemoglobin SC

disease, and 18% had thalassemia syndromes. The mean educational level of the parents

who participated in the study was 12.8 years of schooling. Fifty-one percent of the

parents were married, 28% were divorced, and 2% were widowed. Fifty- one percent of

the parents were currently employed on a fulltime basis, 5% were employed on a part-

time basis,31% were unemployed, and 5% were disabled.7

Thalassemic children need monthly blood transfusion and regular iron chelation

with blood malignancies are treated with chemotherapy protocols and marrow

transplantation. Thus, parents of these children are exposed to practice emotional

suffering for their off springs’ devastating health problem. They are usually responsible,

guilty and hopeless, as well as worried about the health and future.8

Several studies have indicated that presence of a patient or disabled child in the

stress and depression in parents. Mothers usually take active roles in the care of their ill

children and even might favorite activities. Thus, they bear greater stresses than fathers

and are at higher. Divorced mothers had higher depression score than the other two

groups (married mothers and widows) Married mother and living with husband can be

related with lower depression scores.9

The inherited disorders of hemoglobin are responsible for on extremely complex

series sickle cell anemia and thalassemia can cause chronic ill-health and life-threatening.

It was carried out at Dharwad of North Karnataka. Out of the fifty cases, twenty children

were carriers of thalassemia were suffering from thalassemia major. The population of

Dharwad appears to be a responsible extensive screening of the population is needed to

assess the prevalence of hemoglobin in identification of carriers of hemoglobinopathies

and further in taking adequate the measures.10

As part of the personal experience of this investigator, and also as witnessed

among parents of thalassemia children , the level of stress were distressing lending to

many physical and psychological problems like anxiety, depression, Insomnia, weight

loss which leads them to unable to cope with others, failures and low achievements.

6.2 REVIEW OF LITERATURE

Suksiri Prasomsuk et al conducted a study on lived experiences of mother

carrying for children with thalassemia major in Thailand. This quantitative study

explored the lived experiences of 15 mothers of children with thalassemia major by

conducting semi structured interviews; the data were analyzed utilizing content analysis.

Six themes of were identified: lack of knowledge about thalassemia, psychosocial

problems, concerns for the future, social support systems, financial difficulty and the

effectiveness of health services. These findings suggested that a holistic, culturally

sensitive nursing approach should be considered when carrying for children with

thalassemia.11

Afrhan Sharghi et al conducted a study about depression in mothers of children

with thalassemia blood malignancies: a study from Iran. Cross-sectional study. 294

mothers were recruited in 3 groups. Mothers of children with thalassemia, blood

malignancies, and a control group. The result of this study can contribute to the

development of a screening program, depression burden and promoting quality of life for

mothers of children with malignancies.12

Pradeep Rao et al Conducted study on psychopathology and coping in parents of

chronically ill children in Mumbai, North India. 30 parents whose children who had

thalassemia were randomly selected from the thalassemia day care centre of a teaching

general hospital. The parents were interviewed on a semi structured Performa and also

rated on stress and mechanisms of coping scales. Chronic illness in children affects the

psychological health of the parents. Active coping strategies are associated with fewer

distress indices and thus if inculcated may improve the ability to bear the burden of the

illness without becoming themselves affected by psychiatric illness.13

Sapountzi – Krepia Z et al Conducted a study about a qualitative study on the

experiences of mothers caring for their children with thalassemia in Athens, Greece.

Using a semi structured questionnaire, the researchers interviewed convenient sample of

19 mothers who have children with thalassemia. A considerable failure to provide

information regarding carrier testing prior to married or genetic screening for thalassemia

during early pregnancy at the time of the participants pregnancies was noted. Emotional

distress, fear of death, and difficulty in dealing with feelings were some of the mothers

concerns.14

Brown Ronald et al Conducted a study on analysis of parenting problems

for caregivers of children with thalassemia. A situational analysis of problematic

situations was conducted for 37 caregivers of children with thalassemia who ranged in

age from 5-13 years. Participants responded to a semi structured interview related to

caring for a child with thalassemia. The interview included the domains of medication

adherence, nutrition, minimizing and coping with pain episodes, social problems,

academic difficulties and children’s expression of negative feelings related to having

thalassemia. Caregivers described a total of 356 problems. Almost all caregivers reported

experiencing problems with their children’s nutrition, minimizing pain episodes and their

children expressing feelings about having thalassemia. Moderately challenging and

emotionally upsetting problems were reported for coping with symptoms. Nutrition

issues were more frequently reported for younger children. Findings have salient clinical

implications for the care of children with thalessemia.15

STATEMENT OF THE PROBLEM

“A STUDY TO ASSESS THE STRESS AND COPING STRATEGIES

AMONG PARENTS OF THALASSEMIA CHILDREN AT VANIVILAS

HOSPITAL IN BANGALORE WITH VIEW TO DEVELOPE AN

INFORMATION BOOKLET ON STRESS REDUCTION STRATEGIES”.

6.3 OBJECTIVES OF THE STUDY

6.3.1 To assess the Stress among Parents of Thalassemia Children.

6.3.2 To assess the Coping Strategies among Parents of Thalassemia Children.

6.3.3 To correlate the Stress and Coping Strategies among Parents of Thalassemia

Children.

6.3.4 To determine the level of Stress and Coping Strategies among Parents of

Thalassemia Children.

6.3.5 To develop information booklet on Stress Reduction Strategies

6.4 HYPOTHESIS

H 1 There is no significant relationship between Stress and Coping Strategies among

Parents of Thalassemia Children.

H 2 There is no significant association between Stress and selected Demographic

variables of Parents of Thalassemia Children.

H 3 There is no significant association between Coping Strategies and selected

Demographic variables of Parents of Thalassemia Children.

6.5 OPERATIONAL DEFINITION

ASSESSMENT

In this study it refers to the organized, systematic continuous of collecting Data

from the Parents regarding Thalassemia Children.

STRESS

In this study it refers to the psychological, physiological and sociological

imbalance experienced by the Parents towards their Children’s of Thalassemia which is

measured by stress rating scale.

COPING STRATEGIES

In this study it refers to the specific actions (or) behaviors adopted by the Parents

in order to manage the stress which is experienced during treatment of their Children.

PARENTS

It refers to Father and Mother who stays with the Children for more than three

days.

CHILDREN

It refers to the Children less than eighteen years who are in Thalassemia ward.

THALASSEMIA

It refers to a group of inherited blood disorder characterized by reduced (or)

absence of hemoglobin to oxygen carrying proteins inside the red blood cells.

INFORMATION BOOKLET

A printed booklet which will contain information regarding stress reduction

strategies.

6.6 ASSUMPTION

Stress is a universal phenomena which is unique to every individual.

Stress and coping are universally proportional.

6.7 DELIMITATION OF THE STUDY

The study is limited to the Parents who are taking care of Thalassemia Children in

Vanivilas hospital.

6.8 VARIABLES

DEPENDENT VARIABLES

Stress and coping strategies of Parents of Thalassemia Children.

INDEPENDENT VARIABLES

Consists of selected demographic variables such as age, sex. Religion, education,

place of living and health sources.

7. MATERIALS AND METHODS

7.1 SOURCE OF DATA

The data will be collected from the Parents of Thalassemia Children at

Vanivilas Hospital in Bangalore.

7.2 METHOD OF DATA COLLECTION

7.2.1 RESEARCH DESIGN

Non-Experimental Descriptive Research Design.

7.2.2 RESEARCH APPROACH

A Descriptive Survey Research Approach.

7.2.3 RESEARCH SETTING

The study will be conducted at Vanivilas Hospital in Bangalore.

7.2.4 POPULATION

In this study population consists of Parents of Thalassemia Children.

7.2.5 SAMPLE SIZE

The samples of study consists of 60 Parents of Thalassemia Children at

Vanivilas in Bangalore.

7.2.6 SAMPLING TECHNIQUE

Non Probability convenient Sampling Technique.

7.2.7 CRITERIA FOR SAMPLING

INCLUSIVE CRITERIA Parents

Who are willing to participate in the study.

Who are staying with the children for not less than two months.

Who can understand and speak Kannada and English.

EXCLUSIVE CRITERIA Parents

Who are not willing to participate in the study.

Who have any pre-existing physical and mental illness.

7.2.8 METHODS OF DATA COLLECTION TOOL

A structural questionnaires schedule will be used to assess the stress and

coping strategies of Parents of Thalassemia Children.

Description of Instruments: The structural questionnaire consists of 3 parts.

Part - I Demographic Performa.

Part - II Stress scale.

Part – III Coping check list.

7.2.9 DATA ANALYSIS PLAN

The data will be analyzed by using descriptive and inferential analysis.

DESCRIPTIVE STATISTICS

Frequency, mean, mean percentage and standard deviation will be used.

INFERENTIAL STATISTICS

Co-efficient and correlation test will be used.

7.3 DOES THE STUDY REQUIRE ANY INTERVENTION TO BE

CONDUCTED PARENTS (OR) OTHER HUMANS?

Yes.

7.4 HAS THE ETHICAL CLEARENCE BEEN OBTAINED FROM

YOUR INSTITUTION ?

Yes, Permission will be obtaining from;

The research committee of Varalakshmi College of Nursing.

Authorities of Vanivilas Hospital.

8. LIST OF REFERANCES (VANCOUVER STYLE FOLLOWED)

1. Shrley.A.Hill. Cognitive Coping Strategies Among Mothers Of Children With

Thalassemia. Wings Of Gause Wayne State University Press Publishers; 79-89

2. Akbar Hussain and Ipshita Juyal. Stress Appraisal and Coping Strategies among

Parents Of Chronic ill Children. Journal of the Indian Academy of Applied

Psychology.July2007;Volume 33: 172-182

3. Sucursala. Dr.Felix,Str.Dr. Romanian Thalassemia Association Contact Information.

Romanian Institute Of Hematology And Blood Transfusion; Extension 2006

4. Rund.D. and Rachmilewitz.E.Thalassemia New England Journal Of Medicine. 2005

September; Volume 353:1135- 1146

5. M.Sengupta ,Ph.D. Thalassemia Among The Tribal Communities Of India, The

Internet Journal of Biological Antropology. Volume1: 2008

6. Gyan Mudra. A Study Of Perceived Stress, Impact And Coping Strategies. The

International Journal of Interdisciplinary Social Sciences.Volume2; Issue 4 : 325-334

7. Karen.M.Gill, Ph.D, Kelly K.Antony,BS,James W.Carson, MA,Rupa Reddig-

Lalliger,MD,Charles W. Daeschner,MD And Russell E.Ware,D,PhD Daily Coping

Practice Predicts Treatment Effects In Children With Thalassemia Disease. Journal

Of Paediatric Psychology. December 2006; Volume 26: 163-173

8. Saviolo-Negrin, N; Cristante, F;Zanon,E Canclini, M; Stocco,D;Girolami,A.A

Psychology Parents with a Hemophilic Child; A Quantitative approach, Hemophilia.

1999; 5: 63-68.

9. Olsson.M.B; Hwang.C.P, Depression in Mothers And Fathers of Children with

Intellectual Differences. Iranian Institute Of Health sciences Research, 2001; 45:535-

543.

10. Shivashankara.A.R. Jailkhani R, Kini A. Hémoglobinopathies in Dharwad, North

Karnataka: A Hospital.February 2008; Volume 21: Issue 1:593-599.

11. Suksiri Prasomsuk, Arunee Jessrisuparp,Thawalwong Ratanasiri,and Amornrat.

Lived Experiences Of Mothers Caring For Children With Thalassemia Major In

Thailand, Journal For Specialist In Peadiatric Nursing, January

2007;Volume12:Issued 1.

12. Afran Shargli, Mogan Karbakhsh, Bhrooz abaei, Alipas. Depression In Mothers Of

Children with Thalassemia Blood Malignancies:A Study From Iran, Clin Pract

Epidemol Mental Health.October 2006; Volume 2,

13. Pradeep Rao,Prakash V. Pradhan and Henal Shah. Psychopathology And Coping In

Parents Of Chronically ill Children, Indian Journalof PaediatricsOctober2007;Volume

71.

14. Sapountzi-Krepia. Z.Roupa,M.Gourni,F,Mastorakou,E.Vojiata,A.Kouyioumtzi,S.Van

Sheel. A Qualitative Study On The Experience Of Mothers Caring For Their Children

with Thalassemia In Athens, Greece, Journal Of Peadiatrics Nursing,2004;Volume

21;Issue2:142-152.

15. Brown RonaldT.PhD, Ivers-Landis, Carolyn.PhD. Drotar, Dennis PhD,Bunke,Vicki

PhD,Lambert,Richard G.PhD,Walker,A.Adrienne M.A. Factors Associated with The

Attitudes and Expectations of the Patient’s Suffering from Thalassemia; Scandinavian

Journal Of Caring Sciences.May 2004; Volume 18; Issue 2: 2004, 177-187.

9 SIGNATURE OF THE STUDENT

10 REMARKS OF THE GUIDE

Child with Thalassemia is going to cause stress and less coping among the psychosocial problem among the parents who are taking care of Thalassemia children. So investigator rightly chosen the topic of this stress and coping of parents of Thalassemia children

11NAME AND DESIGNATION OF THE GUIDE

MRS. DEVI.C.G Assot. Professor,

11.1GUIDE NAME AND ADDRESS

MRS. DEVI.C.G Assot. Professor, Department of Psychiatric Nursing.Varalakshmi College Of Nursing , Bangalore- 57

11.2 SIGNATURE OF THE GUIDE

11.3 NAME OF THE HEAD OF THE DEPARTMENT

MRS. DEVI.C.G Assot. Professor, Department of Psychiatric Nursing.Varalakshmi College Of Nursing , Bangalore- 57

11.4 SIGNATURE OF THE HEAD OF THE DEPARTMENT

12 REMARKS OF THE PRINCIPAL

The research topic selected is relevant to attempts to empower the parents of Thalassemia children with stress reduction strategies.

12.1 SIGNATURE OF THE PRINCIPAL