Date of Award
6-19-2024
Degree Type
Thesis
Degree Name
Doctor of Philosophy (PhD)
Discipline
Social Sciences
Department
Sociology and Social Policy
First Advisor
Prof. CHAN Hau Nung Annie
Second Advisor
Prof. CHEN Hon Fai
Abstract
There is unequivocal evidence that family caregivers contribute to healthcare systems worldwide by providing care for persons with chronic illnesses in the home setting. his study explores the lived experiences, perceptions, and caregiving trajectories of 30 family caregivers of youth aged 16-24 diagnosed with Substance Use Disorders (SUDs) in Zambia. Data was collected through in-depth semi-structured interviews, a caregiving timeline, and participant observation and analysed using interpretative phenomenological analysis. Guided by the integrated theoretical framework of positioning theory and the theory of caregiving dynamics, this study offers a new lens for understanding caregiver’s experiences regarding caregiver identity, self-perceptions, interpersonal relationships, and caregiving dynamics such as commitment, expectation management, and role negotiation, and how sociocultural factors influence caregiving processes and responses. Findings suggest that for parental caregivers, self-positioning as a caregiver meant a begrudging acceptance of reality and an ambiguous loss of a child that was and would have been. The problematic behaviours of youth with SUDs made managing daily care a dilemmatic and precarious experience for most carers whose lived experiences involved negotiating societal expectations of raising a good child vis-à-vis their children’s unresolved SUDs. Caregivers experienced adverse hysio-psychosocial impacts such as chronic stress, burnout, and isolation, albeit with minimal positive experiences of SUD caregiving. Their experience of healthcare service use involved navigating a complex plural medical system with cyclical help-seeking itineraries influenced by the chronic and relapsing nature of SUDs and the treatment-elusive tendencies of most youths. The rise of the “prophets” and “papas” (spiritual fathers) and their prominence in faith-based healing services reveal a deeply entrenched manipulation and extortion of family caregivers. The study’s findings also highlight the multifaceted losses that caregivers experience at personal and social levels. Despite the noted challenges, most caregivers continue in their role through resentful perseverance, a yearning for the return to normalcy of the youth and a consequent end to their seemingly unending caregiving trajectories. This study reveals nuances of the specific element of caregiver commitment unique to this population of family caregivers. Their experiences depict the psychosocial vulnerability of many caregivers with ambivalent feelings of hope and despair. With heightened anxiety about the future of the youth, many caregivers asked: “Who will take care of my child when I die?” This question raises more questions and demonstrates the limited support from extended family, community members, and the government for caregivers of youth with SUDs in Zambia, an overlooked and neglected population. This lack of family, community, and policy support has great implications for policy and practice. Findings from this study may influence interventions that support caregivers and care recipients in terms of family and employment policies, as well as caregiver support programs (financial, educational, psychosocial, instrumental, and respite services). The formulation and implementation of specific policies for youth mental health, recruitment of community mental health social workers (to bridge the gap between health facilities and the community) would aid in the recovery of these youth, reducing the caregiver burden and improving the well-being of family caregivers.
Language
English
Copyright
The copyright of this thesis is owned by its author. Any reproduction, adaptation, distribution or dissemination of this thesis without express authorization is strictly prohibited.
Recommended Citation
Kabembo, I. M. (2024). Lived experiences, perceptions, and caregiving trajectories of family caregivers of youth with Substance Use Disorders (SUDs) in Zambia (Doctoral thesis, Lingnan University, Hong Kong). Retrieved from https://commons.ln.edu.hk/otd/210/
Included in
Public Health and Community Nursing Commons, Social Welfare Commons, Social Work Commons