Loss and transcendence in couples living with MND: An Interpretative Phenomenological Analysis

Abstract

The aim of this qualitative study was to explore couples’ experiences of living with MND (MND). Previous research has not focussed on the experiences of both people with the disease and their partners, but tended to look at each separately. In examining the experiences of both side by side and reflecting on each other, the aim of this study was to explore an overlooked aspect of the experience of living with MND and make an original type of contribution to the extant literature. Method Most previous research into MND has relied upon quantitative methods. The study used a qualitative method and collected two types of data. The longitudinal case study comprised analysis of one couple’s journal of their experiences of MND, spanning the period of one year, from the diagnosis to death of the individual with the disease. It also incorporated a narrative interview of the couple. Narrative interviews were also carried out with 12 couples. Interpretative Phenomenological Analysis was used to analyse the data. Results From the analysis utilizing Interpretative Phenomenology, themes were derived from the data. The super-ordinate themes of altered body, diminishing self, altered temporality and transcending embodiment were established, with many subordinate themes deriving from these. The study reveals that although couples experienced significant physical deterioration and emotional and social losses, they developed new understandings of themselves and each other, in relation to the abstractions time and embodiment, which enabled them to cope with living with the disease. Conclusion The study suggests that living with MND can be understood as something individuals with the disease and their partners respond to in ways that intimately link them together. The study proposes that couples may be better supported by psychological services and considers how this might occur.

Date of Award	1 May 2013
Original language	English
Awarding Institution	Edge Hill University