Couples' illness representation and coping procedures in prodromal Huntington disease

Huntington disease (HD) is a degenerative neurological disease that typically onsets in midlife. It leads to progressively severe impairment in cognitive, behavioral, and motor function and premature death. Persons who test positive for the HD gene expansion know they will develop the disease. Research indicates changes are detectable several years before onset. Thus, HD has a long prodromal period (prHD). While researchers are aware of changes, little is known whether persons with prHD or their companions notice changes, or how they make sense of and cope with them. Leventhal and colleagues developed the Common Sense Model of Illness Representation (CSM) to describe how people make sense of illness. According to the CSM, people notice somatic changes, form illness representations, select coping procedures and evaluate them, and reappraise illness representations in an iterative process. The CSM has been used to explore illness representations in a variety of illnesses, including diagnosed HD. The authors of the model state it is also applicable in anticipated illness but this assertion has not been adequately tested.

The purpose of this thesis was to use the CSM to explore and describe illness representations in persons with prHD and their companions. The results of this exploration are presented in three papers. The first paper, presented in Chapter 2, was a preliminary study based on interview data from 8 persons and 7 companions. Results of this analysis indicated persons with prHD and companions noticed and made attributions for changes, suggesting they formed illness representations. However, they were unsure whether some changes were related to HD. Results were considered preliminary because participants were not directly asked to make attributions. Data were also limited to changes in work function and the sample size was small. In the next two papers, 23 couples were interviewed. The purpose of the second paper, presented in Chapter 3, was to explore illness representations in persons with prHD and their companions and evaluate the usefulness of the CSM in anticipated illness using prHD as a model. Results supported preliminary findings: Participants noticed changes, made attributions, used coping strategies and evaluated them. Again, they unsure whether some changes were related to HD. Other elements of the CSM were partially supported by the data. The third paper, presented in Chapter 4, used quantitative and qualitative methods to explore coping in persons with prHD and companions. Participants were asked open-ended questions about how they coped with changes and were also verbally administered the Brief COPE scale. Both quantitative and qualitative data showed participants used active coping, acceptance, planning, and social support. Participants rarely used denial or substance abuse. Persons with prHD used more coping strategies than companions. Three major themes from the qualitative interview were identified: trying to fix it, can't fix it, and not broken yet. Qualitative interviews revealed some coping strategies that the Brief COPE did not measure. Findings from these papers may inform interventions to help people with prHD and companions cope with changes. Persons with prHD and companions might benefit from knowing what changes might be related to HD in order to cope more effectively.