Exploring the experiences of caregivers to individuals diagnosed with the first episode of mental illness at Butabika Referral Hospital

Abstract

Introduction: Some perplexing events and situations take people by surprise especially as they seek for answers. The fact that such happenings are not timed takes people through emotional roller coaster where they as themselves all sorts of questions without the corresponding responses. Hence, the caregivers’ experiences fit this context especially when the patients have been newly diagnosed with mental illness. Hence, the present study qualitative study explored the experiences of patients’ caregivers. Objective: The objective of this study was to explore the caregiving experiences of individuals whose family member has been diagnosed with FEM at Butabika National Referral Hospital. Methodology: An explorative phenomenological qualitative study was conducted among caregivers who accompany individuals with FEM at Butabika Hospital using purposive sampling method. In-depth interview guide in English and interpreted using local language for those who did not know English during data collection. Data was single-entered and analyzed using qualitative software NVIVO version 13 for analysis. Results: The study findings indicate that caregiving experiences of caregivers to individuals diagnosed with FEM included burdensome responsibility, uncertainty, financial burden, perceived stress and stigma, lack of knowledge, response of immediate social network, professional burden, the unpredictability of mental illness, emotional burden, dilemma of disclosure, mixed feeling. In addition, interventions and available support systems for caregivers where the use of extended family is a support in caring for FEM, the sequence of helping seeking and caring for FEM, role shifting and family dynamics. Lastly, Copying strategies employed by caregivers include; role shifting and family dynamics, copying and support, feeling responsible for their illness, copying and support, acceptance, becoming closer, hope in transition, praying and surrendering to God, advice to and from other caregivers and a plea to the general public. Conclusion: The study indicates that the caregivers’ individuals diagnosed with FEM are faced with various experiences and they also employ a number of copying strategies to deal the negative experiences. Hence, designing and implementing programs a post-discharge surveillance and home visits can create opportunities to involve families in the care process, while implementing support group therapy and FEM programs can significantly reduce the caregiver burden.