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Massey Univers1 y 
Library 

Perception of Support Provided for People with Traumatic Brain 

Injury in relation to Caregiver Burden 

A thesis 

submitted in partial fulfilment 

of the requirements for the Degree 

of 

Master of Arts in Psychology at 

Massey University 

JULIE REBECCA FRASER 

Massey University 

2003 



II 

Abstract 

This study explores caregiver perceptions of social supports provided for people 

with Traumatic Brain Injury (TBI) in relation to caregiver burden. Twenty-four 

people acting as' primary caregivers of a person with TBI completed measures of 

social support and caregiver distress (Head Injury Behaviour Scale and a social 

support questionnaire developed specifically for this study). The domains 

assessed included the nature and number of treatment services utilized by the TBI 

person and caregivers ' perceptions of these, the problems exhibited by the TBI 

person, and the distress experienced by the caregiver. Significant correlations 

were found between caregiver distress and the following variables: number of 

problems exhibited by the TBI person, change in caregiver employment status, 

helpfulness of treatment services for TBI person, and overall caregiver 

satisfaction. Regression analyses revealed that the number of problems exhibited 

by the TBI person and lack of helpfulness of treatment services were significant 

predictors of caregiver distress. These correlations and regressions were 

interpreted with respect to the buffering hypothesis and the Stress Appraisal 

Coping model (SAC). It was concluded that caregiver perception of social 

support rather than social support p er se, is associated with caregiver distress, and 

that caregiver perception can buffer or attenuate caregiver distress. 

Methodological considerations and directions for future research are discussed. 



III 

ACKNOWLEDGEMENTS 

First and foremost I would like to acknowledge the support of my supervisor, Dr 

Janet Leathern for her invah.iable hours of guidance and supervision throughout 

this thesis. Genuine thanks for her enthusiasm, and effort in producing this work. 

And thanks so much for your patience! 

The generosity of people that completed the questionnaires was great. Thanks to 

all those volunteers and subjects who were involved in the study, for their unpaid 

time and contribution. 

I would also like to thank my family for their support. For Maman et Papa for 

their years of pain and endurance! I would also like to acknowledge the enormous 

support of my partner and friend, Paul. This study is literally the product of his 

help and inspiration. For the ideas and suggestions, reading and editing, for 

morale boosts and emotional support, and for tolerance ... merci beaucoup. 



Abstract 

Acknowledgements 

Contents 

List of Tables 

List of Figures 

List of Appendices 

Introduction 

CONTENTS 

Formulation of Social Support 

Page 

II 

III 

IV 

VI 

VII 

VIII 

1 

1 

Impact of TBI on Family Members' Lives 11 

The Psychological Impact of TB! 11 

The Impact of Kinship Relationship on Burden 17 

The Effect of TB! on Relationships 20 

The Social Impact of TBI 26 

Social Isolation 26 

Summary 31 

Method 35 

Participants 35 

Measures 37 

The Social Support Questionnaire 37 

The Head Injury Behaviour Questionnaire 38 

Procedure 41 

Data Analysis 41 

IV 



v 

Results 43 

Correlational Analyses 4 7 

Confounding Variables 47 

Distress and Type of Social Support 4 7 

Distress and Quantity of Social Support 48 

Distress and Perception of Social support 48 

Distress and Treatment Noncompletion 49 

Multiple Regression Analyses 50 

Discussion 5 3 

Caregiver distress and subjective social support 54 
/r 

Treatment Noncompletion and Caregiver Distress 57 

Caregiver Distress and Objective characteristics of 58 
Social Support 

Caregiver Distress and Demographic Variables 58 

Methodological Issues and Implications 61 

Conclusion 63 

References 65 

Appendices 75 



Table 1: 

Table 2: 

Table 3: 

LIST OF TABLES 

Demographic Characteristics of the Caregivers and 
People with TBI 

Treatment services received by people with TBI 

Frequency of Problem Behaviours Exhibited by the 
TBI person, and Caregivers' Mean Distress Ratings 
at the Problems Exhibited by the TBI Person 

VI 

Page 

36 

43 

46 



Figure 1. 

Figure 2. 

Figure 3. 

Figure 4. 

LIST OF FIGURES 

Relationship between employment at the time of 
TBI and employment at present for TBI person 
and caregiver 

Relationship between treatment services received by 
the person with TBI and caregiver perspective of 
helpfulness of services 

Relationship between treatment services received as a 
group and caregiver perspective on helpfulness of 
treatment services 

Relationship between problems exhibited by the TBI 
person and caregiver distress 

VII 

Page 

37 

44 

45 

46 



Appendix.A: 

Appendix.B: 

Appendix C: 

Appendix.D: 

Appendix E: 

Appendix.F: 

LIST OF APPENDICES 

Demographic Questionnaire for Caregiver 
and TBI person 

Social Support Questionnaire 

Head Injury Behaviour Rating Scale 
(Caregiver Version) 

Letter of Approval from the National Ethics 
Committee (Waikato Branch) 

Letter of Approval from the Massey University 
Human Ethics Committee 

Participant Information Form 

VIII 

Page 

75 

77 

81 

85 

87 

89