Parents’ lived experience of healthcare for children with long term conditions: qualitative interview study.

THE PROBLEM:

There is a dearth of literature concerning how parents of children with long term conditions (LTCs) experience and manage their child’s care. While GPs could be the coordinators of care, very often parents bridge the gap in communication between primary and secondary healthcare.

This study aims to gain an understanding of parents’ experiences of healthcare for children with long term conditions.

THE APPROACH:

In this qualitative study, co-production was used to ensure public involvement and authenticity of the research. Fifteen semi-structured interviews with parents of children with LTCs were carried out. The interviews were audiotaped, transcribed verbatim and analysed using the Framework approach.

THE LEARNING:

The analysis revealed a meta theme ‘complexity of experience’ and five key themes: Impact, Interactions, Experience of Care, Feelings, Feedback.

Having a child with an LTC is ongoing and relentless. Relationships within the family can become strained, but are also a key source of support. Parents see themselves as having a major role in coordination and communication between healthcare teams, to ensure consistency of care. Parents’ viewed the GP role as small in comparison to secondary care: often limited to prescribing medication, onward referrals and providing support.  Consultations can be seen as an iceberg where attending the appointment is visible but the constant and complex demands of the illness, the child, and the family remain hidden.

WHY IT MATTERS:

This research describes in depth the everyday complexity of parents’ lives. Clinicians should be more aware of the challenges parents face and the benefits they report of appropriate support when offered it.

Presenting author: Emily Devoy, Medical Student, eedevoy1@sheffield.ac.uk (twitter @emilydevoy4)

Co-authors:

Joanne Thompson, Academic Unit of Primary Medical Care, The University of Sheffield, j.thompson1@sheffield.ac.uk

Jenny Swann, Academic Unit of Primary Medical Care, The University of Sheffield, j.swann@sheffield.ac.uk