Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

Polly Livermore; Klaudia Kupiec; Lucy R Wedderburn; Andrea Knight; Ameenat L Solebo; Roz Shafran; Glenn Robert; N J Sebire; Faith Gibson; IMPACT Steering Group

doi:10.2196/57238

Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study

JMIR Res Protoc. 2024 Apr 3:13:e57238. doi: 10.2196/57238.

Authors

Polly Livermore^{1

2

3

4}, Klaudia Kupiec¹, Lucy R Wedderburn^{2

3

4}, Andrea Knight^{5

6

7}, Ameenat L Solebo^{3

8}, Roz Shafran³, Glenn Robert⁹, N J Sebire³, Faith Gibson^{10

11}; IMPACT Steering Group¹²

Collaborators

IMPACT Steering Group:
Eire Byrne, Natalia Kasaru, Morgan Pawlett, Cameron Papantoniou, Emily Earle, Nathanael Bourns, Rachel Pulfree-Blythe, Eunice Kasaru, Emma Piepenstock, Gemma Molyneux, Heather Rostron

Affiliations

¹ Rheumatology Department, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.
² NIHR Biomedical Research Centre at Great Ormond Street Hospital for Children, London, United Kingdom.
³ University College London Great Ormond Street Institute of Child Health, London, United Kingdom.
⁴ Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, London, United Kingdom.
⁵ Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada.
⁶ Neurosciences and Mental Health Program, SickKids Research Institute, Toronto, ON, Canada.
⁷ Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁸ Opthamology Department, Great Ormond Street Children's Hospital NHS Foundation Trust, London, United Kingdom.
⁹ Kings College London, London, United Kingdom.
¹⁰ School of Health Sciences, University of Surrey, Surrey, United Kingdom.
¹¹ Director of Research - Nursing and Allied Health, Great Ormond Street Children's Hospital, London, United Kingdom.
¹² See Acknowledgments, .

PMID: 38568725
PMCID: PMC11024752
DOI: 10.2196/57238

Abstract

Background: Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve their current well-being. One way of doing this is to empower parents and caregivers to have more of the answers that their children and young people need to support them further between their hospital appointments.

Objective: The objective of this co-designed proof-of-concept study is to design, develop, and test a chatbot intervention to support parents and caregivers of children and young people with rheumatological conditions.

Methods: This study will explore the needs and views of children and young people with rheumatological conditions, their siblings, parents, and caregivers, as well as health care professionals working in pediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon them. Creative experience-based co-design workshops will then decide upon top priorities to develop further while informing the appearance, functionality, and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents and caregivers will user-test the chatbot intervention in an iterative sprint methodology to determine its worth as a mechanism for support for parents.

Results: A total of 73 children, young people, parents, caregivers, and health care professionals have so far been enrolled in the study, which began in November 2023. The anticipated completion date of the study is April 2026. The data analysis is expected to be completed in January 2026, with the results being published in April 2026.

Conclusions: This study will provide evidence on the accessibility, acceptability, and usability of a chatbot intervention for parents and caregivers of children and young people with rheumatological conditions. If proven useful, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user-suggested support for parents and caregivers of children with chronic health conditions in health care services. This study is unique in that it will detail the needs and wants of children, young people, siblings, parents, and caregivers to improve the current support given to families living with pediatric rheumatological conditions. It will be conducted across the whole of the United Kingdom for all pediatric rheumatological conditions at all stages of the disease trajectory.

International registered report identifier (irrid): DERR1-10.2196/57238.

Keywords: caregivers; chatbot; paediatric rheumatology; parents and caregivers; parents/carers; pediatric; proof-of-concept; quality of life; rheumatology.

©Polly Livermore, Klaudia Kupiec, Lucy R Wedderburn, Andrea Knight, Ameenat L Solebo, Roz Shafran, Glenn Robert, N J Sebire, Faith Gibson, IMPACT Steering Group. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 03.04.2024.