Table Of Content“Natural” Care:
The lived experience of European
and Chinese family carers for their
stroke impaired relatives in Auck-
land, New Zealand—A qualitative
study
A thesis submitted in fulfilment of the requirements
for the degree of Master of Public Health, The Uni-
versity of Auckland, 2013
Cecilia Wing-Chun Wong
January 2013
Abstract
The informal care workforce is an important but under-researched
population. Unpaid non-professional carers—mostly female and family
members—make up the majority of this workforce. Informal family carers
play an important role assisting impaired family members in their daily
functioning and ability to live at home. However. this role is often under-
recognised and ambiguous in the health system. Using stroke—a condition
which often requires chronic disability management—as an example, this
study aims to investigate the lived experiences of European and Chinese
family carers living in Auckland. This was done through the examination
of ) the family carers’ role; ) the impact of the carer role on the physical
and psychological health of the family carers; ) the family carers’ relation-
ships with their immediate family members and the wider community;
) cultural differences in knowledge, approach and utilisation of carer
support services, and ) the relationship of gender and family care-giving
experiences.
An interpretive phenomenological analysis (IPA) approach guided
this study. Twenty semi-structure interviews were conducted with ten
European and ten Chinese participants. The participants were family
carers recruited from three NGOs working closely with stroke families
in Auckland. The interview transcripts were analysed inductively for
common themes responsive to the study aim.
The key findings from the study provided complex and varied descrip-
tions of the informal family carers’ role and responsibilities for stroke
survivors in Auckland. The carer role can be a hours, seven days a week
job for some participants. Unsupported participants reported negative
physical and emotional health outcomes attributed to care-related burden.
Some participants reported evident change in post-stroke relationship with
the stroke survivor, other family members, their social network, and em-
ployment. Female and male participants reported differences in perception
of gender and the family carer role, and their care-giving experiences.
This study offers insight into the informal care-giving phenomenon
in Auckland from a service user’s perspective. The findings highlight
differences in expectations between family carers and health services,
leading to miscommunication and strain in service provider-service user
relationship. The study also highlights changes in family carers’ service
needs at different stages of the stroke management journey. Appropriate
training and education is necessary immediately after stroke survivor’s
discharge. Psychological support is most desired after stroke survivors’
condition stabilised and carer re-engaged with their personal life. Chinese
family carers require additional support interventions appropriate to the
Chinese model of family care-giving.
Acknowledgements
My deepest gratitude to all my participants and fellow informal family carers.
Thank you for sharing with me stories of tremendous perseverance, dedication
and love for your families. You were the motivation and drive for me to
complete this study.
I would like to thank my wonderful supervisor, Associate Professor Elsie
Ho, for your constructive guidance and for you kind patience. Your passion
and expertise as a mentor has made this thesis journey enjoyable, and has
inspired me to pursue higher level studies in the future.
Sincere thanks to the Stroke Foundation’s Northern Regional team, the
Laura Fergusson Trust, and the Buddhist Compassion Relief Tzi Chi Found-
ation (NZ) for your help and enthusiasm with the participant recruitment
process. Particular thanks for Ann Llewelyn, Lynette Lulich, Linda Williams,
Paula Mitchell, and Thomas Shum for your efforts and time engaging in the
recruitment process.
To my magnificent friends—Esther, Liza and others in Social and Com-
munity Health, and Health Systems in the School of Population Health—thank
you for giving me much needed encouragement throughout this journey.
I am grateful to my loving family for putting up with my absence during
this process. I know it has not been easy. Thank you, dad, for training me to
think outside the box. Thank you, mum, for teaching me to care for people over
things. Thank you, my dearest sister Alicia, for being my biggest supporter
and champion since your birth. Thank you, Blinkie, for being cool. Thank you,
Puffin, for your loyalty and warmth on those cold days.
Finally, to my one and only beloved Tom, thank you for being there for me.
Always.
Contents
Contents i
List of Tables vi
Introduction
. Personal Reflection as a Family Carer for a Stroke Survivor . .
. Purpose of the research . . . . . . . . . . . . . . . . . . . . . . .
. Research Aim and Objectives . . . . . . . . . . . . . . . . . . .
.. Research Questions . . . . . . . . . . . . . . . . . . . . .
. Definition of Informal Family Carers in the Thesis . . . . . . .
. Organisation of the Thesis . . . . . . . . . . . . . . . . . . . . .
Literature Review
. Two Family Theories Applied in Family Carer Research . . . .
.. Familism and Family Carer Research . . . . . . . . . . .
.. Filial Piety and Family Carer Research . . . . . . . . . .
. Role Theory and Informal Care . . . . . . . . . . . . . . . . . .
.. The Family Carer Role . . . . . . . . . . . . . . . . . . .
.. Family Carer Role and Existing Family Relationships . .
.. Family Carer Role as an Identity . . . . . . . . . . . . .
. Gender and Informal Care . . . . . . . . . . . . . . . . . . . . .
.. Gender Inequalities in Physical and Psychological Health
for Family Carers . . . . . . . . . . . . . . . . . . . . . .
.. Gender Role Theory on Gender Inequality in Family Care
.. Filial Piety and Gender Inequality in Family Care . . . .
. Support and Challenges in the Services for Family Carers . . .
.. Health Concerns for Family Carers . . . . . . . . . . . .
.. Support Interventions for Family Carers . . . . . . . . .
.. Barriers to Seeking Support . . . . . . . . . . . . . . . .
. Migrant Family Carers . . . . . . . . . . . . . . . . . . . . . . .
i
Contents
.. Key Barriers for Migrant Family Carers . . . . . . . . . .
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Context of Stroke Recovery in New Zealand
. Pathology of Stroke . . . . . . . . . . . . . . . . . . . . . . . . .
.. Stroke Prognosis . . . . . . . . . . . . . . . . . . . . . . .
. Stroke Management . . . . . . . . . . . . . . . . . . . . . . . . .
.. Historical Context of Disability Care in Western Societies
.. Contemporary Management Services for Stroke Surviv-
ors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. New Zealand Informal Carer Policies and Ongoing Debates . .
.. The New Zealand Carer’s Strategy and Five Year Action
Plan . . . . . . . . . . . . . . . . . . . . . . . . . .
.. Ongoing Debate and Review of Carer’s Policies . . . . .
.. Financial Assistance Pathways Relevant to Stroke Family
Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Methodology
. Study Design . . . . . . . . . . . . . . . . . . . . . . . . . . . .
.. Qualitative Research . . . . . . . . . . . . . . . . . . . .
.. Interpretive Phenomenological Analysis (IPA) . . . . .
.. Researcher as an “Insider” . . . . . . . . . . . . . . . . .
. Interview Schedule . . . . . . . . . . . . . . . . . . . . . . . . .
. Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . .
. Sampling and Recruitment . . . . . . . . . . . . . . . . . . . . .
. Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Results—Roles of Family Carers for Stroke Survivors
. Description of Participants . . . . . . . . . . . . . . . . . . . . .
.. European Sample . . . . . . . . . . . . . . . . . . . . . .
.. Chinese Sample . . . . . . . . . . . . . . . . . . . . . . .
. Tasks and Responsibilities . . . . . . . . . . . . . . . . . . . . .
.. Carer Tasks . . . . . . . . . . . . . . . . . . . . . . . . .
.. Carer Responsibilities—self perception of the carer role
.. Assistance from Other Family Members and Relatives .
.. Assistance from Formal Home Support Services . . . .
. Physical and Psychological Impact of Taking on Carer Role . .
.. Physical Health . . . . . . . . . . . . . . . . . . . . . . .
ii
Contents
.. Psychological Health . . . . . . . . . . . . . . . . . . . .
. Changes in Relationships . . . . . . . . . . . . . . . . . . . . . .
.. With Stroke Survivor . . . . . . . . . . . . . . . . . . . .
.. With Other Family Members . . . . . . . . . . . . . . . .
.. With Wider Social Network . . . . . . . . . . . . . . . .
.. With Employment . . . . . . . . . . . . . . . . . . . . .
. Issues with Role Exchange and Role Reversal . . . . . . . . . .
. Coping Strategies for the Carer Role . . . . . . . . . . . . . . .
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Variations in Family Care-giving Experience
. Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
.. Female Participants’ Opinions . . . . . . . . . . . . . . .
.. Male Participants’ Opinions . . . . . . . . . . . . . . . .
.. Female Participants’ Experiences . . . . . . . . . . . . .
.. Male Participants’ Experiences . . . . . . . . . . . . . .
. Cultural Groups—Europeans and Chinese . . . . . . . . . . . .
.. European Family Model . . . . . . . . . . . . . . . . . .
.. Chinese Family Model . . . . . . . . . . . . . . . . . . .
. Age . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
.. Older Family Carers ( years+) . . . . . . . . . . . . . .
.. Younger Family Carers (under years) . . . . . . . . .
. Severity of Post-Stroke Disability . . . . . . . . . . . . . . . . .
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Differences in Care Journey Through the Health System
. Stages of the Care Journey . . . . . . . . . . . . . . . . . . . . .
.. Hospital Admission and Inpatient Rehabilitation . . . .
.. Stroke Management Immediately Following Discharge .
.. Transitioning into Ongoing Stroke Management . . . .
.. End of life Care and Management . . . . . . . . . . . . .
. Key Barriers Identified . . . . . . . . . . . . . . . . . . . . . . .
.. Issues with Information Delivery . . . . . . . . . . . . .
.. Mismatch of Expectations Between Family Carer and
Medical Professionals . . . . . . . . . . . . . . . . . . . .
.. Migration Related Barriers . . . . . . . . . . . . . . . .
. Key Enablers Identified . . . . . . . . . . . . . . . . . . . . . . .
.. Other Family Members, Community and Other Stroke
Families . . . . . . . . . . . . . . . . . . . . . . . . . . .
.. Rehabilitation Services and Social Support Services . .
iii
Contents
. Chapter Summary . . . . . . . . . . . . . . . . . . . . . . . . . .
Discussion and Conclusion
. Discussion of Key Findings . . . . . . . . . . . . . . . . . . . . .
.. Role of Family Carer for Stroke Survivor in Auckland .
.. Family Carer’s Experiences in Relationship Changes . .
.. Differences in Experiences Between Chinese and European
Family Carers . . . . . . . . . . . . . . . . . . . . . . . .
.. Gender differences in Family Care-giving . . . . . . . .
. Service and Policy Recommendations . . . . . . . . . . . . . . .
. Strengths and Limitations of the Study . . . . . . . . . . . . . .
.. Strengths of the Study . . . . . . . . . . . . . . . . . . .
.. Limitations of the Study . . . . . . . . . . . . . . . . . .
. Future Research Directions . . . . . . . . . . . . . . . . . . . .
. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
A Ethics Approval Document
B Recruitment Advertisements
B. English-Language Advertisement . . . . . . . . . . . . . . . . .
B. Chinese-Language Advertisement . . . . . . . . . . . . . . . . .
C Participant Information Sheets
C. For Family Carer . . . . . . . . . . . . . . . . . . . . . . . . . . .
C.. English-Language . . . . . . . . . . . . . . . . . . . . . .
C.. Chinese-Language . . . . . . . . . . . . . . . . . . . . .
C. For Stroke Survivor . . . . . . . . . . . . . . . . . . . . . . . . .
C.. English-Language . . . . . . . . . . . . . . . . . . . . . .
C.. Chinese-Language . . . . . . . . . . . . . . . . . . . . .
D Consent Forms
D. For Family Carer . . . . . . . . . . . . . . . . . . . . . . . . . . .
D.. English-Language . . . . . . . . . . . . . . . . . . . . . .
D.. Chinese-Language . . . . . . . . . . . . . . . . . . . . .
D. For Stroke Survivor . . . . . . . . . . . . . . . . . . . . . . . . .
D.. English-Language . . . . . . . . . . . . . . . . . . . . . .
D.. Chinese-Language . . . . . . . . . . . . . . . . . . . . .
E Interview Schedule
E. English-Language . . . . . . . . . . . . . . . . . . . . . . . . . .
E. Chinese-Language . . . . . . . . . . . . . . . . . . . . . . . . . .
iv
Contents
References
v
List of Tables
. Domestic Purpose Benefit Weekly Rates by Age and Relationship
Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Maximum Amount Paid for Disability Allowance and Special Dis-
ability Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Table of care-giving tasks according to participant’s involvement,
tasks sharing and frequency (as included in the interview schedule)
. Table of Key Themes Identified, Description, and Response to Re-
search Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Participant Profiles Data: Gender, Age, Relationship, Living Ar-
rangement, Length of Care and Employment . . . . . . . . . . . .
. Participant codes . . . . . . . . . . . . . . . . . . . . . . . . . . . .
. Tasks Reported by Participants . . . . . . . . . . . . . . . . . . . .
vi
