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Positive family connections: co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic

Joanna Griffin (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Debbie Austin (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
John Lynham (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Rasha Hafidh (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Natasha Boxill (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Daniel Sutherland (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Samantha Flynn (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)
Richard P. Hastings (CIDD (Centre for Research in Intellectual and Developmental Disabilities), University of Warwick, Coventry, UK.)

Tizard Learning Disability Review

ISSN: 1359-5474

Article publication date: 16 October 2023

Issue publication date: 14 November 2023

71

Abstract

Purpose

This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years.

Design/methodology/approach

Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback.

Findings

The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities).

Research limitations/implications

Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise.

Originality/value

This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

Keywords

Acknowledgements

The development and delivery of PFC was funded in part by a grant from Cerebra.

The authors wish to thank all the family carers who took part in the pilot groups and provided feedback.

Citation

Griffin, J., Austin, D., Lynham, J., Hafidh, R., Boxill, N., Sutherland, D., Flynn, S. and Hastings, R.P. (2023), "Positive family connections: co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic", Tizard Learning Disability Review, Vol. 28 No. 3/4, pp. 61-70. https://doi.org/10.1108/TLDR-03-2023-0008

Publisher

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Emerald Publishing Limited

Copyright © 2023, Emerald Publishing Limited

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