IncorporAting parental health aDVOcaCy when mAnaging unwell Children in primarY care (ADVOCACY): a multi-methods systems approach to co-develop a complex intervention

Aim
To conduct a multi-method study using a systems approach to enhance our understanding of how parental advocacy could be incorporated into the management of unwell children, informing the co-development of an intervention to reduce healthcare-associated harms.

Background
Healthcare-associated harms continue to impact unwell children. Factors that could be modified to prevent future child deaths were found in 37% of UK deaths reviewed in 2021-22, and 30% of reported paediatric safety incidents in primary care led to harm, including death.

Parents are an underused source of system resilience for preventing unsafe care. Preliminary results from the FRIEND (family role in paediatric safety incidents) study show that parents advocating for their children can prevent harms from occurring.

However, there are knowledge gaps of how parents can effectively advocate, and be enabled to advocate, within primary care pathways. Current advocacy interventions either focus on secondary care or only address one aspect of the system, such as parental behavioural change. By not addressing the complex interactions of system components, interventions have a limited impact on improvement outcomes.

This project will use the experiences of parents whose children have come to harm whilst receiving healthcare and those of healthcare staff, to explore and identify how the management of unwell children could promote parental advocacy. Ultimately to co-design and develop a complex intervention, to improve children’s primary care safety.

Design and timeline

Work package 1: Qualitative evidence synthesis (months 1-15)
Undertake a systematic literature search and meta-ethnography to establish the experiences of parents and staff and current evidence relating to parental advocacy within primary care.

Work package 2: Qualitative study (months 16-29)
Conduct in-depth, semi-structured individual and group interviews with a diverse range of participants (parents and primary care staff), utilising a Human Factors framework to develop the interview schedules with patient and public (PPI) input. Interviews will explore the participants’ understanding and experience of advocating and constructing their roles and responsibilities.

Data will be analysed using two separate frameworks relevant to the study. Firstly, the Activity Theory framework, to understand how systems and people interact to reach a common goal. Secondly, the Systems Engineering Initiative for Patient Safety 3.0 framework, an established Human Factors framework, provides a deeper systems perspective of when and how parents advocate within the pathway.

Work package 3: Co-development of a complex intervention (months 30-45)
Results will inform a series of stakeholder workshops, known as the Change Laboratory model (derived from Activity Theory). This interventional methodology brings together people with exemplar roles within the system (including public), who will work together to develop a logic model and co-design the content, evaluation and implementation plans for a prototype intervention to promote parental advocacy.

Anticipated impact and dissemination
The theory- and practice-based intervention will have potential for implementation across the UK.
The Change Laboratory group and PPI representatives will be central to the dissemination strategy, including at least two publications in high-impact journals, UK and international conference presentations, a public-facing website, an information booklet and a stakeholder webinar.

Gweithredol
Research lead
Dr Thomas Purchase
Swm
£525,594
Statws
Yn weithredol
Dyddiad cychwyn
1 Medi 2024
Dyddiad cau
31 Mai 2028
Gwobr
Health and Care Research Wales/NIHR Fellowship
Cyfeirnod y Prosiect
HCRW NIHR-FS(D)-2023