What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?

What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?

Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R

Archives of Disease in Childhood

2023

Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care

Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.

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October List 2023