Tydskrif vir Geesteswetenskappe
On-line version ISSN 2224-7912
WAHL, Sindi and NEWMARK, Rona. The self-perceived quality of life of staff caring for adults with intellectual disabilities. Tydskr. geesteswet. [online]. 2009, vol.49, n.2, pp. 289-306. ISSN 2224-7912.
The concept "quality of life" is a product of as well as a means to the universal movement towards empowerment of individuals, equity and "health for all" (World Health Organisation, 1995, 1998). As a sensitising concept and social construct, quality of life facilitates programmatic, community and societal change. Within the field of intellectual disabilities there is a rising interest in improving the quality of life of people with intellectual disability. This is enhanced by the movement towards deinstitutionalisation, which generally sees staff caregivers as providers of a quality product. Accordingly, there is a growing emphasis on staff stress and well-being in order to improve service delivery. Within the field of positive psychology there is a need for a greater emphasis on staff well-being and positive experiences. It is argued, however, that there is not sufficient theory crediting the range of experiences and perceptions of staff caregivers (Hastings & Horne, 2004). Prior research on staff caregivers generally focused on pathology, for example stress and burnout. The study on which the article is based, focused on the perceptions of formal caregivers in an institution for the intellectually impaired about their quality of life. The aim was to understand the self-perceived quality of life of staff caring for adults with intellectual disabilities using Positive Psychology theories, and, more specifically, fortigenic principles. We focused on negative factors, pure positive experiences and fortigenic factors that enable movement to the wellness or disease poles of a health/disease continuum. It was envisaged that the study could make a contribution to the field of intellectual disabilities by expanding the focus on staff well-being and thereby enhancing service delivery. It could also possibly add to the field of positive psychology by increasing our understanding of what makes for health (quality) and not disease. This qualitative interpretive study was conducted in an institution for adults with intellectual impairment. Twelve caregivers at the institution willingly participated. Purposive sampling was used and data were generated through structured open-ended, informal questions and a focus group interview. The results were subsequently analysed thematically. The aim of the analysis was to investigate the caregivers 'perceptions regarding their quality of life. The themes discussed in the study centre on 1) the caregivers' definition of quality of life, 2) their perception of their current quality of life, 3) their perception of the negative factors, stressors, positive experiences and psychofortological factors that impact on their quality of life, and 4) possibilities for improving their quality of life. The findings indicate a paradox of caregiving where the participants report not only on caregiving, but also on care-receiving within their relationship with the adults with intellectual disabilities. What they receive from the relationship with the adults with intellectual disabilities is unconditional acceptance and meaningfulness that seems to protect them against the stressors of everyday life. Therefore, in this relationship, caregiving seems to be a fortigenic factor for most of the participants and also a means towards interpersonal flourishing. On the basis of these findings several recommendations are made for further research, with a view to striving towards improving the quality of life of staff caring for adults with intellectual disabilities. Further research could possibly focus on caregiving as a fortigenic factor with specific reference to meaningfulness and unconditional acceptance received by staff caregivers in their relationship with the adults with intellectual disabilities. Another possibility would be to focus on the similarities and differences between these results on the one hand, and the perceptions of formal caregivers of individuals with more severe disabilities on the other. The possible pathogenic side to caregiving as a fortigenic factor also leaves room for further exploration.
Keywords : Quality of life; self-perceived; positive psychology; fortology; staff; caregivers; intellectually disabled; adults; interpersonal flourishing.