Using a Co-Production Prioritization Exercise Involving South Asian Children, Young People and their Families to Identify Health Priorities Requiring Further Research and Public Awareness

For which topic were research priorities identified?

child health

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Marginalized communities are often excluded from prioritization exercises due to concerns about language barriers or accessing communities. It is increasingly being recognized that health interventions, public awareness campaigns and research that translates to health improvements should be co-produced with patients and families. At a time of limited resources, prioritization of research topics is a necessary part of the research process and subsequent healthcare commissioning. By encouraging co-learning and mutual ownership of the products of the research collaboration, it is argued that this will improve research quality by greater participation rates, increase external validity and decrease loss of follow-up. It is well-known that both SA adults and children have different health needs when compared to their White British counterparts. Examples include differences in rates of acute asthma admissions, psychiatric morbidity, type 2 diabetes and cardiovascular disease. A growing evidence base suggests that these differences are attributable to ethnic variations in disease severity, differences in health-seeking behaviour and/or health service accessibility. In the light of the limited understanding of the research agendas of SAs, the South Asian Health Foundation (SAHF) initiated the first study to involve both SAs and HCPs in identifying priorities for investment in research and public awareness priorities and to identify outcome indicators important to SAs that researchers could use to measure improvements in health. This study presents the key methodology and findings from this work.

What was the objective?

to facilitate South Asian families and healthcare professionals participation in a prioritization exercise to co-produce child health research and public awareness agendas

What was the outcome?

a list of 7 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

focus group; survey

How were the priorities for research identified exactly?

Step 1: systematic literature review to identify health topics and/or outcomes significant to healthcare professionals or South Asians. Step 2: survey: participants were asked to list five topics related to South Asian children that they felt were under-researched and should be priority areas for research, to list topics that needed to be promoted to raise public awareness and to list relevant outcome indicators that should be measured to demonstrate success of any health intervention, resulting in top 10 topics for public awareness, top 8 topics for research and top 10 topics for indicators. Step 3: focus groups: priorities identified in survey were presented to focus groups, participants were asked to prioritize these topics in order of importance, participants were also asked to submit health topics important to them which were not mentioned in survey. Step 4: thematic analysis: findings of focus group were compared with survey

Which stakeholders took part?

South Asian families, healthcare professionals. Participants: 27 healthcare professionals and 35 South Asian families.

How were stakeholders recruited?

All HCPs involved in the care of children were approached. 1. HCPs approached and consented at two different national paediatric conferences 2. Electronic dissemination of the survey link emailed to HCPs by the London Deanery. SA families: The project team proactively used members of the SA community to recruit a diverse group of SAs. Co-ordinators of local centres were enlisted to recruit directly via their networks. A selective approach to recruitment of parents who had children under the age of 10 years or those who self-reported having children with health issues was made.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.