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

Abstract

Background: Young people in the UK with a long-term condition experience a poorer quality of life than those in most comparable countries. Aims: To gain an understanding of parents' experiences of and contribution to health care for children with Long-term conditions. Methods: 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. Findings: 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. Conclusions: 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.