Family Care-Giving in Mental Health: Experience of Family Caregivers of People Living With Severe Mental Illness in Rural Malawi

Abstract

Malawi, like other low-income countries, has a dearth of access to mental health services and community family support programs. Care for patients with mental illness falls to families who provide care within the home. Our study sought to understand the experiences of family caregivers of people living with severe mental illness by exploring the cultural dimensions of family caregiving practices and the effects of family caregiving on both patients and caregivers. This qualitative study was conducted using semi-structured individual interviews with 52 participants that included people living with mental illness and their family caregivers, community leaders, health care workers, and policy makers. Additionally, we conducted a week-long ethnographic observations with three families and a day long observations with six families. The interviews were translated, transcribed and analyzed inductively together with the field notes using conventional content analysis. We started with open coding of a subset of the interviews to develop a codebook, and we analyzed the codebook and field notes to develop the descriptive categories from which final themes and results were generated. Family caregivers’ lived experience is marked by impoverishment, isolation, and neglect. Social support networks are splintered as a result of caregiving responsibilities and the manifestations of patients’ symptoms which leaves caregivers and people living with mental illness uncertain and hopeless about the future. Family caregivers of people living with severe mental illness in rural Malawi are abandoned and trapped without hope through the experience of caregiving at home. Our findings highlight the fundamental role played by this population of caregivers as well as their vulnerability. Strategic support of this population such as the development of community mental health services and family support programs would serve to restore hope and reduce the extreme isolation and the caregiving burden.