This research study explores the perceived impact of multiple sclerosis on “carepartners” in committed caring relationships as the spousal roles change over time. Both quantitative and qualitative methods were used in this study of persons with MS and their spousal carers residing in Australia during ten months of recruitment. Varied recruitment methods were used including the internet. 263 expressions of interest were received, and 203 survey packets were returned with usable data (77%). The demographic instrument and 4 scales measuring mood, reciprocity, life satisfaction and functional wellness were subjected to descriptive statistical analysis. Results from the quantitative phase of the study supported many international epidemiological findings related to gender, age of onset, difficulty in obtaining a diagnosis in the light of vague early symptoms of MS, and high levels of depression in the study sample. The preliminary analysis suggested that these data should be analysed further in dyadic terms (a person with MS and their identified carer). Further inferential statistical analysis examined the data sub-set of ‘pairs only’ which helped to inform formation of a pool of couples in caring relationships from which was selected a sub-sample of 12 spousal dyads residing in Victoria for interview in the second phase of the study. / Emerging themes from narrative analysis (n=24 persons) revealed pressing concerns, personal strengths and coping strategies of interviewees. Two themes of special interest relating to (1) differing perceptions by ‘carepartners’ of the importance of cognitive changes to the dyadic relationship, and (2) expectations of health professionals are explored. Most respondents agreed that their expectations left much to be desired, suggesting that improvements could be made in the area of health care delivery to persons with MS, their carers and their families. There are implications for the development of a multidisciplinary, ongoing assessment, educational and support program for these persons. Further research is needed to define and expand the proposed role of a specialized key contact person to be a valuable ‘advocate’ in the delivery of timely health care resources throughout the disease trajectory.
| Identifer | oai:union.ndltd.org:ADTP/273527 |
| Date | January 2008 |
| Creators | Zuluaga, Beatrice Harrison |
| Source Sets | Australiasian Digital Theses Program |
| Language | English |
| Detected Language | English |
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