Document Detail

The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups.
MedLine Citation:
PMID:  12614505     Owner:  NLM     Status:  Publisher    
OBJECTIVES: In this exploratory study, an in-depth analysis of accounts of the experiences of people with sickle cell disease (SCD) was undertaken to gain an understanding of the psychosocial impact of the disease. An additional aim of the study was to determine whether these experiences could be conceptualized in terms of quality of life as defined by the World Health Organization (WHOQOL) with the intention of informing psychosocial research. DESIGN: This study utilized a series of non-directive, patient-led, focus groups that specifically addressed the ways in which sickle cell disease impacts on life. Participants were recruited from four centres in London and eight focus group discussions (each one hour in length) were held separately for each centre. METHOD: Altogether 32 hours of focus group materials were tape-recorded and transcribed verbatim. Data were analysed using a phenomenological approach to identify emerging themes. RESULTS: Six themes were identified: Growing up with SCD; Education; Impact of the unremitting nature of the disease; Employment; Effects on relationships; and Hospitalization. CONCLUSION: This research has clearly shown that SCD carries a huge psychosocial burden impacting on physical, psychological, social and occupational well-being as well as levels of independence and environment. These aspects of life are equivalent to the core domains of the multi-dimensional WHOQOL and consequently we have argued that SCD undermines quality of life in important ways. The paper provides a rich source of qualitative data to complement quantitative findings and provides detail of the complex human processes and experiences consequent on a life-long chronic illness such as SCD.
V. J. Thomas; L. M. Taylor
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Publication Detail:
Journal Detail:
Title:  British journal of health psychology     Volume:  7     ISSN:  1359-107X     ISO Abbreviation:  Br J Health Psychol     Publication Date:  2002 Sep 
Date Detail:
Created Date:  2003-Mar-4     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9605409     Medline TA:  Br J Health Psychol     Country:  -    
Other Details:
Languages:  ENG     Pagination:  345-363     Citation Subset:  -    
Department of Haematology, St Thomas' Hospital, London, UK.
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