Lived experiences of family caregivers of mentally ill relatives

Abstract

Aim: The aim of this paper is to report a study conducted to explore the meanings of the lived experiences that Chinese family caregivers in Malaysia ascribed to the care they provided to relatives with severe and persistent mental illness.

Background: In the past, many researchers have used quantitative approaches to explore the experiences of family caregivers of relatives with severe and persistent mental illness. However, the results of these studies have been far from conclusive because of serious methodological flaws. In addition, a large majority of these studies were conducted in western cultures, and it has been difficult to transfer the results to family caregivers in oriental cultures.

Method: The philosophy of Martin Heidegger underpinned the study. Qualitative data were collected mainly through in-depth interviews with 19 criterion-selected Chinese family caregivers of relatives with severe and persistent mental illness in 2002.

Findings: We present the emergent themes reflecting the meaning structures of managing, enduring, and surviving the day-to-day experiences of the Chinese family caregivers. The impact of the stigma of the relatives' mental illness on family caregivers and families is pervasive and strong. As a result, family caregivers tried to avoid talking about their relative's mental illness with extended family or friends in order to protect their families from 'losing face'. In addition, most family caregivers believed that adopting positive behaviours and attitudes helped them cope with caregiving.

Conclusion: Mental health nurses need to help Chinese family caregivers to cope with the stresses and stigmas of their relatives' mental illnesses through psychosocial education or family intervention, and to provide them with culturally-congruent care. They should also educate the public about mental health and ill health through health promotion and education.