G165 Health services for long term conditions from the child and caregiver's perspective: a qualitative analysis. (25th October 2020)

• Record Type: Journal Article
• Authors: Satherley, R; Ewan, K; Green, J
• Is Part Of: Archives of disease in childhood. Volume 105(2020)Supplement 1
• Page Start: A57
• Page End: A57
• Publication Date: 2020-10-25
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2020-rcpch.136
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Aims: The current model of hospital-centred paediatric care in high-income countries was developed to deliver acute specialist services, rather than high quality care for children and young people (CYP) with long term conditions (LTCs) that require multidisciplinary, integrated care. While the limitations of current child health services in the UK have been widely documented from the perspectives of clinicians, academics and policy makers, there is a lack of research into the lived experience of CYP receiving these services. This qualitative study explores CYP and caregivers' experiences of health services for LTCs. Methods: An inductive, qualitative design using in-depth, semi-structured interviews with children (4–16 years; n=20) and their caregivers, receiving care for one of four LTCs (constipation, eczema, asthma or epilepsy). These LTCs were chosen as they are examples of LTCs which provide generalisable lessons about improving outcomes for other LTCs. Art-based methods were used to engage younger children in the discussions. Data was analysed using interpretive thematic analysis. Results: Families expressed several challenges associated with the healthcare they had received during the diagnostic process, including being unsure whether their symptoms warranted health intervention, a lack of specialist knowledge across primary care providers, and poor care continuity. After diagnosis, families desired further understanding around condition management, children wished to be included in discussions with health providers, and families felt there were no opportunities to discuss the psychosocial impact of the condition, particularly around the challenges managing health in school settings. Conclusions: Families reflected on the health services failures to address their needs. Psychosocial support, continuity of care and opportunities for independence play a critical role in promoting the health of children with LTC. These features are essential in the development of integrated care models, to ensure suitability of the workforce and improve care delivery.