Voicing the hidden burden

Abstract

After the deinstitutionalization from psychiatric hospitals, the responsibility of caring for an individual with mental illness often falls on one of the family members. Researchers generally agree that caring for a relative with severe mental illness presents a burden to the family caregiver. In spite of this, there is a dearth in local studies on the lived experiences of care givers of individuals with severe mental illness. Given this reality, the current researcher aimed to describe the lived experiences and burden amongst Maltese family caregivers caring for a relative with a severe mental illness in the community. The research objectives were to examine the impact and concerns of caring for a mentally ill relative, coping strategies used and satisfaction with services offered to them and their mentally ill relative. A qualitative interpretative phenomenological approach with purposive sampling of seven caregivers of individuals with severe mental illnesses was undertaken. An interview protocol was constructed by the present author and the semi-structured interviews were audio taped. Three main super-ordinate themes were extracted: 'burden of being a caregiver ', 'finding ways to cope' and 'expectations about care services'. Participants gave in depth descriptions of the 'burden' of being a caregiver, citing the impact of worrying, feelings of sadness and grief, increased responsibility and changes in their lifestyle. Caregivers experienced greater burden when they were parents, when the relative was perceived to have a poor level of functioning and when they lived in the same household. To alleviate the burden experienced some caregivers used coping mechanisms such as positive reappraisal and family/social support. Caregiver interactions with professionals overall were satisfactory however they wished to be included in discussions and decision making processes related to patient welfare. Respite services were perceived as a service which would decrease the burden on caregivers. Since the overall burden of the study participants was mostly attributed to sadness and worry, caregivers may greatly benefit from emotional support, such as support groups, counseling and psycho education. These interventions would reduce the burden felt and assist the caregivers with practical coping skills. Additionally caregivers should be made aware of all services in the community which might provide them with the necessary support. Further studies are needed to address the care giver's needs and concerns. Such information would assist mental health professionals to gain a better understanding of the caregiver' s experiences and consequently target any support given, to the unique needs of each caregiver. This would not only be of benefit to the care giver but also to the individual with a mental illness.