The 'gift' of life? individual and family perceptions of organ donation
Paper One reports a systematic review of qualitative literature involving bereaved families who were approached about organ donation at the end of life of their relative. The review aimed to understand the implications of the decision at least six months after the bereavement. Fifteen studies were included in the review and were critically appraised using a quality appraisal tool. A meta ethnographic approach yielded three themes: An ongoing relationship with the donor; The psychological impact of the decision; Support in grief. The findings are discussed in relation to the complicated grief literature. Paper Two reports a mixed methods study, which utilised the Self Regulation Model of Illness and Interpretative Phenomenological Analysis. People living with chronic kidney disease and pre dialysis were surveyed (n=31) and interviewed (n=8) about their illness and treatment beliefs and experiences regarding pre emptive living donor kidney transplantation. Responses suggested illness perceptions and treatment knowledge inform treatment preferences. Four master themes emerged from the qualitative analysis (My Kidney and I; Co constructing Decisions; A Kidney Shared as a Problem Solved? and Navigating the Unknown) which described the complexity the option of living donation may present to people. A desire for enhanced self management information to delay illness progression was found.