What contribution do the parents of children with long term conditions make to their NHS care? A qualitative study of lived experience.

Talk Code: 
E.1
Presenter: 
Emily Devoy
Co-authors: 
Jennifer Swann, Joanne Thompson
Author institutions: 
Academic Unit of Primary Medical Care, The University of Sheffield

Problem

There is a dearth of literature concerning how parents of children with long term conditions (LTCs) experience and manage their child’s care and how they provide feedback to NHS services. Research has shown GPs are often the coordinators of care, but very often parents tend to bridge the gap in communication between primary and secondary healthcare. Therefore, having effective channels for parents to provide feedback is an important factor for improving experience of both primary and secondary care. Parents develop expertise in the management of their child’s condition so there is a lot we can learn from their experiences to better improve the services provided. The literature also shows, having a child with a LTC has a broader psychosocial impact on the lives of the parents and siblings, including employment, support and the financial impact, which will be further explored in this research. The aim is to understand what contribution parents of children with LTCs can make to their NHS care based on their lived experience. Our objective is to identify the ways in which parents provide feedback to the NHS about their child’s care.

Approach

This is a qualitative interview study in South Yorkshire. A literature review was carried out to identify the gaps in the literature. From this the research question was formed in an attempt to fill these gaps. A method of co-production is being used to ensure public involvement and authenticity of the research. Semi-structured interviews are currently being carried out, with six already completed and five more scheduled. Recruitment is ongoing and the aim is to interview 15-20 parents of children with physical LTCs until data saturation. The topic guide is being developed iteratively to incorporate emerging themes. The interviews are being audiotaped, transcribed verbatim and analysis of the results using the Framework approach is ongoing and due for completion in April.

Findings

Interviews are being conducted between February and April and analysis is ongoing. This forms part of an educational degree (BMedSci) due for submission in May 2020. This method of co-production allows experts in this area to contribute and shape the research as it progresses. Our findings will provide a greater understanding of parents’ experiences of having a child with a LTC and their perspective on providing feedback to the NHS.

Consequences

This study will show what methods parents use, or know about, to provide feedback to NHS services. This will allow us to understand where potential improvements can be made.

Submitted by: 
Emily Devoy
Funding acknowledgement: 
N/A