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Parents' lived experience of health care for children with long-term conditions

02 June 2022
Volume 3 · Issue 3



Young people in the UK with a long-term condition experience a poorer quality of life than those in most comparable countries.


To gain an understanding of parents' experiences of and contribution to health care for children with Long-term conditions.


This qualitative study includes 15 semi-structured interviews with parents of children with Long-term conditions. The interviews were audiotaped, transcribed verbatim and analysed using Framework analysis.


The analysis generated a meta theme ‘complexity of experience’ and five key themes: Impact, Interactions, Experience of Care, Feelings, Feedback. Parents have a substantial role in coordinating and communicating between health-care teams. Consultations can be like an iceberg where attending the appointment is visible, but the constant and complex demands of the illness, the child, and the family remain hidden.


Clinicians have a major role in signposting parents to different avenues of support. The impact of appointments on families can be reduced by increasing the use of virtual consultation.

Internationally, the UK is underperforming in the context of young people's health. Young people in the UK with a long-term condition are more likely to experience a poorer quality of life than those in most comparable countries (The Nuffield Trust, 2019). In 2019, the NHS Long Term Plan (LTP) reported that there were 1.7 million children with longstanding illnesses in England (NHS, 2019). Within the plan there is a focus on improving the quality of care for children with long-term conditions by sharing best clinical practice, quality improvement projects and integrating paediatric skills across services (NHS, 2019).

Compared to other wealthy countries, a greater number of childhood deaths are caused by non-communicable diseases in the UK, although there is uncertainty as to whether this high mortality reflects higher environmental risks in the UK or issues with health care for long-term conditions (Royal College of Paediatrics and Child Health, 2017).

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