A Visit to Shadowland: Stigma and Other Burdens in Families of Severely Mentally Ill People.

This study explores the previously under researched individual experiences of family burden in different family members of severely mentally ill people, including psychiatric stigma, and therefore makes an original contribution to knowledge. The used methodology, interpretative phenomenological analysis (IPA), is a new methodology committed to the researcher’s use of self in detailed analysis of personal experiences in small samples (e. g. Smith & Osborn, 2003); the use of which also constitutes an original contribution to knowledge on family burden. The sample in this study consists of 13 participants representing mothers, fathers, spouses, adult siblings and adult children of severely mentally ill people. Aspects of burden explored are those related to caring, perpetual uncertainty, the impact of severe mental illness on family relationships, public stigma, self-stigma, the plight of children of severely mentally ill parents, grief and guilt. This study shows that despite extensive research on family burden over many years (e. g. Saunders, 2003) families are still profoundly burdened and that available support is insufficient. This lack of support is partly due to an inability in professionals to work with families in partnership. The experienced burden is highly contextual depending on the severity of the mental illness, temporality, family role and individual circumstances. Moreover children of severely mentally ill parents experience considerable difficulties which affects them in adulthood. The review of the related literature revealed inconsistent, competing and politicised terminology and conceptualisations which has impact on families; both directly and indirectly in that it affects service provision, exacerbates families’ felt uncertainty and impedes implementation of research. I recommend that professionals endeavour to a) view families as respected partners b) offer them support based on empirical contextual needs c) progress towards a consensual understanding of family burden and psychiatric stigma. It is also imperative that the unfortunate situation of vulnerable children of severely mentally ill parents is highlighted. Future research should address the impact of context on family burden, self-stigma in families, barriers to implementation of extant family burden research, and the plight of children of severely mentally ill parents