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A High-Throughput Multiplexed Screening for Type 1 Diabetes, Celiac Diseases, and COVID-19

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Published on: July 5, 2022

Preferences for Peer Support Amongst Families Engaged in Paediatric Screening Programmes: The Perspectives of Parents

Ian Litchfield¹, Lauren M Quinn², Felicity Boardman³

¹Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy

|August 27, 2024

Insights

Parents want peer support for paediatric screening programs, especially for Type 1 diabetes (T1D). This support should offer shared experiences, accessibility, and integrated care for families navigating new diagnoses.

Area of Science:

Pediatric Health
Public Health Screening
Qualitative Research

Background:

Parental preferences for pediatric Type 1 diabetes (T1D) screening programs were explored.
Spontaneous preferences for peer support emerged during qualitative data collection.

Purpose of the Study:

To analyze secondary qualitative data on parental preferences for peer support in T1D screening.
To inform the design of peer support within T1D screening and other health programs.

Main Methods:

Secondary analysis of semi-structured interviews with parents of children aged 3-13.
Framework developed based on NHS England principles: Shared experiences, Accessibility, Person-centred support.

Main Results:

Parents valued peer support for emotional reassurance and information access.
They desired accessible, inclusive communities (in-person/online).
Support should be person-centred, adaptable, and integrated with clinical care.

Conclusions:

Parental needs for peer support in T1D screening align with those for other life-altering childhood conditions.
Findings provide a foundation for designing peer support in various screening programs.

Read full analysis

Abstract

Introduction:

This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions.

Methods:

Data were collected from semi-structured interviews conducted with parents of children aged 3-13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person-centred and integrated peer support.

Results:

Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person-centred and integrated peer-support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care.

Conclusions:

The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life-altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes.

Patient Or Public Contribution:

Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient-facing materials, the content of our topic guides and the analysis and interpretation of our findings.

Keywords:

Type 1 diabetes children and young people long‐term conditions peer support population screening

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