VIETNAM NATIONAL UNIVERSITY, HANOI UNIVERSITY OF EDUCATION NGUYEN THI MAI HIEN MENTAL HEALTH AND COPING STRATEGIES AMONG CAREGIVERS OF CHILDREN WITH CEREBRAL PALSY DOCTORAL DISSERTATION IN CLINICAL PSYCHOLOGY Code: 9310401.01 HANOI - 2023 VIETNAM NATIONAL UNIVERSITY, HANOI UNIVERSITY OF EDUCATION NGUYEN THI MAI HIEN MENTAL HEALTH AND COPING STRATEGIES AMONG CAREGIVERS OF CHILDREN WITH CEREBRAL PALSY DOCTORAL DISSERTATION IN PSYCHOLOGY Major: Children and Adolescent Clinical Psychology Code: 9310401. Tran Van Cong Ph. CANDIDATE SUPERVISORS UNIVERSITY OF EDUCATION HANOI - 2023 i DECLARATION I, the undersigned, hereby declare that this thesis “Mental Health and Coping Strategies Among Caregivers of Children with Cerebral Palsy” is entirely my work without plagiarism. All information sources used in this dissertation have been acknowledged and its authors have been referenced.
This research was only submitted to the University of Education, Vietnam National University, Hanoi under the framework of the Children and Adolescent Clinical Psychology Doctoral Training Program. Name: Nguyen Thi Mai Hien ii ACKNOWLEDGEMENTS I would like to express my deep gratitude to all who have contributed to the development of this dissertation. Wholehearted thanks are given to my mentors and advisors, Professor Bahr Weiss, and Associate Professor Tran Van Cong for their fruitful guidance in shaping the conceptual framework, developing research tools, data analysis, thesis writing, and upholding. At some point in time, I lost motivation, felt down, and wanted to give up, my Ph.
programmate, Ho Thu Ha, gave hands to me with great empathy. She authentically shared her experiences in doing research. Thus, I step by step regain the energy and interest in moving the research forward. There are not enough words to express my appreciation for her support.
It would not be possible for me to complete this work without the precious collaboration of the Cerebral Palsy Family Association of Vietnam. My sincere thanks go to the chairperson, Ms. Dinh Thi Lan Anh, her staff, Ms. Nguyen Thu Hong, and more than 300 of its members who have joined hands with the research tool development, and data collection process.
I also want to convey thanks to the Vietnam Psychotherapy Association where I have been working for more than 3 years, its members, volunteers, and people at the University of Education, Vietnam National University for enabling and assisting me on my pathway to complete the research. My family without whom I would never have had the courage and goodwill to go through many challenges and complete this long process. My husband Hoang Quoc Dung, my son Hoang Quoc Phong, and my daughter Hoang Thi Mai Nuong have shown their patience, their love, and their being on my side to accept any version of myself. I am lucky to have them in my life.
Although I cannot name all persons to whom I owe a debt of gratitude for their support, I do hope that they understand my true respect for them. iii LIST OF ABBREVIATIONS CDS : Caregiver Difficulties Scale COPE : Coping Orientation to Problems Experienced CP : Cerebral Palsy CPFAV : Cerebral Palsy Family Association Vietnam CWD : Children with Disabilities GSO : General Statistics Office GMFCS : Gross Motor Function Classification System GAD-7 : Generalized Anxiety Disorder-7 MoH : Ministry of Health PHQ-9 : Patient Health Questionnaires- 9 PWD : People with Disabilities QoL : Quality of Life CRPD : United Nations’ Convention on the Rights of Persons with Disability UNICEF : United Nations International Children's Emergency Fund WHO : World Health Organization iv TABLES OF CONTENTS DECLARATION. ii LIST OF ABBREVIATIONS.iii TABLES OF CONTENTS.iv LIST OF TABLES. vi LIST OF FIGURES.
Objectives of the study. Scope of the research. Contribution of the thesis. 6 CHAPTER 1 THEORETICAL BASIS.
Literature review on mental health and coping strategies. Overview of the research on mental health. Overview of the research on coping strategies. Factors associated with mental health and coping strategies among caregivers of children with CP.
Research on the intervention to support caregivers to improve mental health…. The underlying theoretical models. Measurement of mental health among caregivers of children with CP. Measurement of coping strategies used by caregivers of children with CP.
Measurement of associated factors to mental health. The mental health status of the studied caregivers of children with CP. Prevalence of depression, anxiety, and quality of life. Differences in depression, anxiety, and quality of life among caregivers by demographic characteristics.
Coping strategies among caregivers of children with CP. The coping strategies used by caregivers of children with CP. The aspects associated with coping strategies used by caregivers. The factors associated with the mental health status of the caregivers.
Correlation among depression, anxiety, and quality of life. Factors associated with depression of caregivers. Factors associated with anxiety of caregivers. Key factors associated with the quality of life (QoL) of caregivers.
Mental health status among caregivers of children with CP. Coping strategies used by caregivers of children with CP. Factors associated with identified mental health of the caregivers.180 LIST OF RESEARCH PAPERS RELATED TO THE DISSERTATION. 209 vi LIST OF TABLES Table 1.1: Summary of factors associated with mental health among caregivers of children with disabilities.1: List of provinces having caregivers joining the study.2: Age, ethnicity, religion, and marital status among primary caregivers.3: Education and occupation of primary caregivers.
Socio-economic conditions of the caregivers’ families.6: Characteristics of the child with CP. Percentage of caregivers with depression and the level of severity. Percentage of caregivers with anxiety and the level of severity.3: Caregivers with both depression and anxiety.4: Caregiver's quality of life by items. Mean scores of depression, anxiety, and QoL by localities.
Mean scores of depression, anxiety, and QoL by family conditions. Mean scores of depression, anxiety, and QoL by.96 CP children’s features. Mean scores of depression, anxiety, and QoL by social support. The rate of caregivers reporting reasons for their emotional problems.
Correlation among 4 factors of coping.11: Correlation between coping strategies and # years living with CP.12: Correlation between coping strategies and functional impairments, independent living of CP children.13: Correlation between coping strategies and family incomes.14: Correlation between coping strategies and care responsibilities.15: Correlation between coping strategies and burden of care. Correlation among PHQ-9, GAD-7 and QoL.17: Effects of different coping strategies on depression.18: Effects of social support on caregivers’ depression.19: Effects of the family’s support and incomes on depression.20: Effects of care responsibilities on depression. Effects of caregiving burden on depression. Effects of CP child-related factors on depression.23: Effects of interaction between coping strategies and risk factors on depression.24: Interaction between social support and risk factors on depression.25: Effects of different coping strategies on anxiety.26: Effects of social support on caregivers’ anxiety.27: Main effects of the family’s support and incomes on anxiety.28: Effects of care responsibilities on anxiety.
Effects of caregiving burden on anxiety. Effects of CP child-related factors on anxiety.31: Effects of interaction between coping strategies and risk factors on anxiety.32: Interaction between social support and risk factors on anxiety.33: Effects of different coping strategies on QoL.34: Effects of social support on caregivers’ QoL.35: Main effects of the family’s support and incomes on QoL.36: Effects of care responsibilities on QoL. Effects of caregiving burden on QoL. Effects of CP child-related factors on QoL.39: Effects of interaction between coping strategies and risk factors on QoL 147 Table 3.40: Interaction between some social support and risk factors.149 viii LIST OF FIGURES Figure 1.2: Theoretical model of stress, appraisal, and coping of.58 Larazuz and Folkman.3: Conceptual framework of mental health and associated factors among caregivers of children with CP.
Percentage of caregivers by depression symptoms. Percentage of caregivers by anxiety symptoms. The four-factor coping strategies of caregivers. Frequency of coping strategies used by caregivers.
Differences in coping strategies by region. Differences in coping strategies by rural/urban areas. Differences in coping by CP child’s motor function impairments. Differences in coping strategies by CP prognosis.
Proposed diagram of mental health care applied by CPFAV. Rationales Vietnam has made strong commitments to support people with disability (PWD) including children with disability (CWD) by the endorsement of the National Assembly’s Law for PWDs in 2010, issuing the Government’s Decree on supporting PWDs in 2012, ratifying the United National Convention on the Rights of Persons with Disabilities (CRPD) in 2014, approving Government’s Decree on social welfare policies in 2021, and issuing the Decision Number 1190/QD-TTg for approving the program to support people with disability for 2021-2030 executed by Ministry of Labor, Invalid and Social Affairs. Following UNICEF’s report, CWDs in Vietnam, like many other countries, have faced more difficulties than those without disabilities including higher rates of CWDs not going to school, less accessibility to health care and rehabilitation services, and less quality of life (UNICEF, 2018). Cerebral Palsy (CP) is seen as the leading cause of disability in children.
The prevalence of CP worldwide ranges from 1.4 per 1,000 live births (McIntyre et al. In Vietnam, about two children per 1,000 babies born live with CP, accounting for 30-40 percent of CWDs (MoH, 2018). It is not uncommon for children with CP to have multiple impairments of motor, sensory, communicative, and intellectual functions, activity limitations, and participation restrictions. The majority of children with CP require lifetime extensive support in daily living activities and completely depend on caregivers, mostly parents in their families.
CP has made a big impact on the quality of life of those affected and their families (Parisi, Ruberto & Precenzano, 2016). There is a matter of course that the health 2 status, both physical and mental health, of children with CP has been influenced by the health of their caregivers including caregivers’ mental health. Caring for a CP child requires an enormous effort and will to deal with a child experiencing long-term functional limitations and dependence. One of the main challenges is to manage their child’s chronic health issues while maintaining the role of daily living earnings (Parisi et al.
Quite a few research show that caregivers of CWDs like those with CP children experience chronic stress caused by daily care demands, marital conflicts associated with rearing CWDs, financial burdens to get treatment services for the child, loss of leisure time due to care taking responsibilities, worrying about the future of the child when the parents are no longer able to care for their child, negative attitudes from others (Basaran et al., 2013; Larson & Bishoff, 2014; Al-Gamal, 2015; Maridal et al. All those mentioned issues have put caregivers of children with CP at a higher risk of common mental health problems such as depression, anxiety, and lower quality of life. A system review of 14 articles published in 10 years from 2006 to 2016 revealed that the prevalence of depression and anxiety among CP children’s caregivers was much higher than those of typically developing children or those of children with other diseases (Barreto et al. Depression and anxiety have significant effects on life functioning as well as the quality of life of caregivers.
Thus, suffering common mental health issues like depression and anxiety, and the overall quality of life could be among essential indicators for the mental health situations of caregivers (Parisi, Ruberto & Stewart, 2016; Maridal et al. One of the objectives of supporting children with CP is not only to improve the functions of the child but also to support their caregivers and 3 families as effectively as possible. The values of the family-focused principles in provision of the support services for children with CP have been mentioned (Saloojee, Rosenbaum & Stewart, 2011). It will be helpful for both children and their parents if the parents’ problems and the determinants of parents’ quality of life are taken into consideration in the overall plan of support for children with CP.
The strategies to maximize the health of the caregivers including mental health have been proposed (Parisi, Ruberto & Stewart, 2016). UNICEF emphasizes that the caregiver is central to maternal and child health programs and that the caregiver is central to achieving nurturing care. Efforts to support children are not likely to be achieved unless support for the caregivers is simultaneously provided.