A meta-synthesis of qualitative studies exploring parents’ and children’s experiences of living with Sickle cell disease during middle childhood (6-11yrs).

Introduction Sickle cell disease (SCD) is a common genetic blood disorder that can lead to severe health complications such as chronic and acute pain, stroke, infection, cognitive impairment, and ultimately organ damage. Individuals with SCD start to experience pain within the first year of life when there is a switch from foetal haemoglobin (Hb F) to adult haemoglobin (Hb A). Children with SCD experience disruptions in daily activities and school absenteeism almost twice as many days as their healthy peers.AimThe aim of the meta-synthesis was to systematically find qualitative studies that explore parents’ and children’s experiences of living with sickle cell disease during middle childhood.MethodsA search of eight electronic databases was conducted, Scopus, PubMed/MEDLINE, APA PsycINFO, Embase, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), British Nursing Index, Global Health and Combined databases including APA PsycINFO, PsycARTICLES, CINAHL, MEDLINE, AMED, Global Health on EBSCOhost. Grey literature search included: Government reports from WHO, NICE, and CDC, documentaries on lived experience from healthtalk.org, and charity and support group websites. An interpretative synthesis method was used to understand the sickle cell phenomenon through the experiences of parents and children.ResultsFive key themes were identified: Communication; Carer Responsibility; Reaction to diagnosis; Engaging in physical activity; and Prior knowledge of SCD.ConclusionThe review revealed an insufficient study of sickle cell disease in middle childhood, particularly in the UK. Four out of the five themes generated expressed mostly the experiences of the parents whilst one expressly stated the experiences of children. Children express how they would like to get engaged in physical activities but sometimes cannot, due to exhaustion or because the choice of activity is inappropriate. The absence of qualitative studies with this age group suggests future research is needed with both parents and children.