Illness perceptions of Cystinosis patients and their significant other
Research type
Research Study
Full title
Exploration of Illness Representations of Individuals with Cystinosis and their Significant Other: A Qualitative Approach.
IRAS ID
148218
Contact name
John Weinman
Contact email
Sponsor organisation
King's College London
Research summary
Cystinosis is a rare genetic illness that affects various organs in the body, in particular the kidneys. Although cysteamine is able to delay the effects of the illness, the side effects cause compliance issues. A large percentage of studies on Cystinosis explore the clinical effects with little focus on the psychological impacts. Focus on illness perceptions is increasing, and beliefs of the Self-Regulatory Model (SRM) suggests that patients form mental representations about their illness based on the identity, cause, time-line, consequences and emotional response, this forms the basis of the illness perception questionnaires (IPQ). Although psychological research is also minimal for this patient group, growing literature has highlighted the extent to which illness perceptions of close family members or significant others can have a significant impact on adjustment and illness representations of those with a chronic illness (Karademas, 2013). The participants will be asked to expand on their answers to provide more of an insight into their experiences. Therefore the present study aims to explore illness perceptions in patients with Cystinosis (n=10) and their significant others (n=10) using semi-structured cognitive telephone interviews based on responses to the Brief IPQ. Transcription of the audiotapes will occur after the interviews. Framework analysis will be employed for the analysis of the data, reducing the information to themes that appear prominent in relation to illness perceptions, coping and adjustment mechanisms. The aim of this proposed study is to explore illness perceptions in patients with Cystinosis using cognitive interviews based on responses to the Brief IPQ and to enhance knowledge and understanding of significant others’ illness representations of their partner’s illness, Cystinosis.
Karademas, E. C., (2013). The psychological well-being of couples experiencing a chronic illness: A matter of personal and partner illness cognitions and the role of marital quality. Journal of Health Psychology, 1-11.
REC name
London - Brent Research Ethics Committee
REC reference
14/LO/0785
Date of REC Opinion
10 Jun 2014
REC opinion
Further Information Favourable Opinion