Title:
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Illness perceptions, coping styles and psychological distress in adults with Huntington's disease
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Research studies exploring outcomes in people with Huntington's disease (HD) suggest that
distress is common in this group. Nonetheless, there is little research investigating
psychological factors which contribute to distress in people with HD. The present thesis
therefore considers aspects relating to the psychological outcomes of anxiety and depression
for people with HD, using the self-regulation model (SRM) as a biopsychosocial framework
to develop understanding of the individuals' experience. Section one comprises a narrative
review which advocates for the use of the SRM for this population and considers research
studies in support of this argument. The review considers each of the illness perceptions in
light of psychological distress and further explores the role of coping in this process.
Moreover, suggestions are made in relation to further research which would enhance the
applicability of the SRM for researchers and clinicians. In section two, a research paper
reports the findings of a quantitative study which used hierarchical multiple regression to
explore the relationship between the domains of the SRM and psychological distress in 87
adults with a diagnosis ofHD. The findings of this study indicate that illness perceptions
relating to the SRM reflect distinct and meaningful constructs for people with a diagnosis of
HD. Furthermore, the Illness Perceptions Questionnaire-Revised (IPQ-R) demonstrated
satisfactory internal consistency and test-retest reliability when adapted for HD. The findings
are discussed in relation to existing research and clinical implications are proposed.
Interventions such as acceptance and commitment therapy and solution-focused interventions
are considered as useful approaches for people with HD. Moreover, the current study
provides further evidence for a collaborative approach to the treatment ofHD. The final
section, section 3, contains a further discussion of the findings, as well as personal reflections
and recommendations for future research.
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