A study of adolescents’, parents’ and health professionals’ views, experiences and expectations of hospital services for sickle cell disease using co-design
Michelle R C EllisAbstract
Background
Worldwide over 300,000 people per year are affected with Sickle Cell Disease (SCD). SCD is the most common genetic disorder in England and affects over 1 in 2000 live births. A significant proportion of approximately 17,500 individuals living with SCD in the UK are adolescents. Having SCD can be challenging for adolescents, due to the biological and psychosocial transitions they experience in this developmental stage. There has been lack of research which explored the experiences of adolescents with SCD in different health contexts, specifically within hospital services, where they are most likely to receive care and consultation. The overall aim of the study was to explore adolescents’, parents and health professionals’ views, experiences, and expectations of SCD services and co-design an intervention to enhance services for adolescents with SCD.
Methods
This research employed an Experienced Based Co-Design approach which consisted of observations in hospital settings e.g. Accident and Emergency Departments, Day Units, Paediatric / Adult wards and Out-Patient Departments to understand the context of the hospital settings. The study population consisted of three groups (n = 38) adolescents, parents and health professionals. Narrative interviews of adolescents aged 10-19 (n = 13) 39%, parents (n = 9) 27% and semi-structured interviews of health professionals (n = 11) 33% were used to explore their views, experiences and expectations of SCD hospital services in one Trust in London. Thematic analysis was used as outlined by (Braun and Clarke, 2018). Co-design groups were undertaken with adolescents, parents and health professionals to identify a possible intervention(s) for the participants or the SCD services. The participants consisted of different genders and ethnicity across the three groups of adolescents, parents and health professionals. There were n = 11 (85%) female adolescents and n = 2 (15%) males. In the Parents’ group there were n = 7 (77%) females and n = 2 (22%) males who participated. In the Health Professional group there were n = 10 female (90%) and n = 1 (10%) male who participated in the interviews. Of all the participants there were diverse ethnicities, (n = 10) 26%, Caribbean, Black African (n = 23) 61% and (n = 5) 13% White.
Results
The findings outlined 7 themes which are (1) Knowledge and Awareness, (2) Expectations and Experiences of SCD services (3) Perceptions of SCD Hospital Services and Treatment (4) Role of Health Professionals (5) Pain and Pain Management (6) Emotion, Distress, and Impact of SCD on Adolescents and others (7) Improvements in Health care services. Adolescents identified the need for themselves, health professionals and the wider community to have knowledge and awareness of SCD. Adolescents described the importance of understanding the trajectory of the condition, how to transition to adult services and how to be more independent and advocate for themselves. They also emphasised that health professionals, especially those working in Accident and Emergency needed much more depth of knowledge. Parents discussed adolescents requiring more knowledge of what causes a SCD crisis, preventative measures and of the medications and treatment available to adolescents. Parents highlighted their own lack of knowledge about SCD and their perceptions of health professionals lack of knowledge. Health professionals highlighted that some health professionals may have interest in other areas and not want to learn about SCD. Parents spoke about the relational dynamic they expected from health professionals and the difficulties adolescents had if they were not listened to or believed about their level of pain. Health professionals identified the structural barriers which impacted their role as health professionals. All three groups highlighted effective and ineffective pain management and the lack of competence of health professionals in cannulation. The emotional impact of SCD and the importance of psychological support was echoed by all three groups of participants.
Conclusions
The importance of education of participants, the therapeutic relationships between adolescents, parents and health professionals was critical. The environment and the psychological effect of SCD and treatment was emphasised. In the co-design group, all participants wanted to develop an educational intervention which would include infographics, podcasts and animations. The importance of their narratives being shared within the educational interventions which will be developed was emphasised. All participants wanted psychological support to be provided in the hospital services by professionals who had knowledge of SCD and are culturally attuned.