Exploring the Psychological Experiences of Growing Older with SCD
Research type
Research Study
Full title
Exploring the Psychological Experiences of Growing Older with Sickle Cell Disease: A Thematic Analysis from a UK perspective
IRAS ID
364752
Contact name
Dakuro Fiberesima
Contact email
Duration of Study in the UK
1 years, 0 months, 26 days
Research summary
People with Sickle Cell Disease (SCD) are now living longer than ever before because of improvements in medical care. This is a positive development, but it also means that many people with SCD are now entering older adulthood for the first time, presenting new challenges for health and social care services that have limited prior experience supporting this population at this life stage. As a result, there remains a lack of research, clinical guidance, and service-level understanding around how best to meet the psychological and social needs of people ageing with SCD. While the physical effects of the condition have been widely studied, far less is known about the psychological impact of living with SCD into later life.
This study aims to explore the emotional and psychological experiences of adults aged 50 and over who live with SCD in the United Kingdom. It will focus on how people make sense of topics such as ageing, identity, resilience, wellbeing and interactions with healthcare systems over time. Understanding these experiences can help improve psychological support, raise awareness of the challenges faced by older adults with SCD and inform more compassionate and culturally sensitive care.
Participants will be recruited through NHS haematology clinics and community networks. Each participant will take part in a single semi-structured interview lasting up to 90 minutes, either online or in their home, depending on preference. Interviews will be audio-recorded, transcribed and analysed to identify key themes and patterns across participants’ stories.
This research is being conducted by a Trainee Clinical Psychologist at the University of East Anglia as part of a doctoral thesis. It has been designed with input from people who have lived experience of SCD to ensure the questions and materials are relevant, accessible and respectful. The findings will be shared with participants, charity organisations and healthcare professionals to help shape future psychological and support services for people ageing with SCD.
REC name
South East Scotland REC 02
REC reference
26/SS/0029
Date of REC Opinion
22 Apr 2026
REC opinion
Further Information Favourable Opinion