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.

Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity. The intervention combined informal multiprofessional teaching with facilitated peer exchange and support, and was delivered over 6 sessions of 90 minutes per week. The uptake rate was 25%; carers were less likely to accept if they were in paid employment (OR=0.26, P=0.06), and more likely to accept if they utilized avoidance coping (OR=1.13, P=0.04) or their patient had worse physical status (OR=2.1, P=0.03). Attendees described significant support and knowledge gains from the multiprofessional input and peer group. Most relied on social comparison processes to appraise their situation. Potential detection of significant effects on global psychological scores (i.e. anxiety, depression, and burden) using multivariate analysis was disallowed due to attrition. This acceptable and accessible intervention provided information and support; further outcome studies are needed for a range of interventions. Short-term interventions are unlikely to affect global psychological scores, and future evaluations should include additional time points of data collection to demonstrate support during attendance.