Caring for caregivers of low vision individuals

Aw, Ai Tee (2023) Caring for caregivers of low vision individuals. Doctoral thesis (PhD), Manchester Metropolitan University.

Preview

Available under License Creative Commons Attribution Non-commercial No Derivatives. Download (1MB) | Preview

Abstract

The prevalence of adults with low vision has increased dramatically in rapidly aging countries. While research has shown that physical and psychosocial factors affect the quality of life of caregivers for low-vision individuals, there is still a lack of understanding of the caregiver's experiences in a fast-aging developing Asian country, like Singapore. Hence this study aimed to understand the quality of life of caregivers for low-vision individuals and its relationship with their physical and psychosocial factors that include caregiver burden, coping process, health outcome, and health utilisation. The study used a mixed-methodological approach: Phase one include a cross-sectional survey to measure the quality of life, caregiver burden, coping process, health outcome, and health utilization on a sample of 60 caregivers. Phase 2 included 12 semi-structured interviews with caregivers who were recruited from Phase 1 to explore the coping strategies and social aspects of the experience among those who care for low-vision individuals. Quantitative results from the survey showed that the caregiving journey has affected the mental health more than the physical health of the caregivers, and their burden was primarily due to personal strain rather than role strain. The caregivers tend to employ emotion-focusing coping than problem-focused coping and reported mainly psychological distress and physical problems. Correlation analysis showed that caregiver burden has a stronger relationship with emotional-focusing strategies than problem-focused strategies. Hierarchical regression analysis showed that the quality of life of the caregivers was predicted by the coping strategies, whereby caregivers are more likely to report a higher quality of life when they adopt more problem coping strategies and less emotional coping strategies. Thematic analysis revealed that caregiving journey have both positive and negative effects of caregiving on their quality of life from both mental and physical aspects. Three different coping patterns were revealed: Caregivers proactively seeking support to solve caregiving issues; Caregivers consciously reframing perception and accepting care responsibility, and Caregivers adapting and managing negative emotions. The interviews data also shed lights on the challenges in their caregiving journey: Lack of formal healthcare and social support, including helpline or peer support group, monetary support, and, social activity for caregiver groups. The clinical and research implications are considered. These findings are imperative for clinical implications and revisions of government policy.