Living with life limiting conditions: A participatory study of people's experiences and needs

Abstract

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.This thesis is focused upon experiences of living with life limiting conditions. It aimed to gain accounts from people who, potentially, had palliative care needs, to highlight a range of experiences of their lives and conditions and to identify what these service user needs might be. Establishing any contribution of involving service users in the research and any social or environmental factors that may shape or influence experiences of living with a life limiting condition were further aims. To this end it was pertinent to consider if the social model of disability could contribute new perspectives to palliative care research. This qualitative research utilised a participatory approach. Service users were intrinsically involved in the research within the Service User Research Advisory Group (SURAG). My separate study group comprised of twenty-five participants, sixteen women and nine men, aged thirty eight to eighty five years. Fourteen participants had a cancer diagnosis, ten had non-cancer conditions and one participant had both cancer and another non-cancer condition. Ten participants took part in individual face-to-face interviews, twelve in small discussion groups and three were studied purely in a period of participant observation. Thematic analysis was conducted collectively with SURAG members and identified eight different but interconnected themes. Themes of diagnosis, fear, anger/frustration, grief, relationships, services, difference/individuality and independence/dependence were identified. As well as being a distinct theme in its own right, independent/dependenwt as in fact a central and overarching theme with a negotiation between independence and dependence being evident across all themes. The theme of services is presented as a theme in its own right. The participatory approach revealed themes unlikely to have been identified by myself as a sole researcher. It also led to service user outcomes being identified and largely positive appraisals of their involvement in the research.This work is funded by the Research and Development Department at Worthing and Southlands Hospitals NHS Trust