Management of pain in sickle cell disease
Research type
Research Study
Full title
Management of pain in sickle cell disease: A qualitative exploration of factors which help patients prevent and cope with an acute painful crisis.
IRAS ID
123236
Contact name
Stanton Newman
Contact email
Sponsor organisation
City University London
Research summary
Sickle cell disease (SCD) is the most common inherited condition in England. It mainly affects those of Black African and Caribbean ethnic groups. One of the most common complications of SCD is the Acute Painful Crisis (APC), which can be very severe and is the main reason for acute admission to hospital for patients with SCD in Britain.
The research team is developing a pain-coping education session to help patients develop the skills required to cope with APC and implement strategies to help avoid these painful episodes. To assist in the development of the pain-coping education, this research aims to explore how patients with SCD cope with APC. We will ask patients to participate in a focus group to discuss how they cope during an APC, what strategies they use to manage their pain and what factors exacerbate their pain. We will also ask patients about their views on the content and structure of a pain-coping education session and how this may be delivered successfully. We aim to hold 3 focus groups of up to 8 patients each.
Partners or family members are often involved in supporting patients manage their illness therefore this study will also explore these questions from the perspective of partners and family members. We aim to hold a further 3 focus groups with up to 8 partners/family members in each for this purpose.
The focus groups will be audiotaped and transcribed. The transcripts will be analysed using thematic analysis to identify common themes.REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
13/NE/0173
Date of REC Opinion
21 May 2013
REC opinion
Favourable Opinion