Establishing Research Priorities for Children Living With Chronic Health Conditions: A Value-Weighting Study by Australian Caregivers

Abstract

Aim

Improving the wellbeing of children with chronic health conditions and their caregivers can be maximised through research that addresses the priorities of this population. This study aimed to investigate the research topics and areas of care deemed most important to caregivers of children living with chronic health conditions in Australia.

Methods

A list of 25 research topics were presented in two rounds of a classic Delphi consensus survey to caregivers of children with chronic health conditions. Caregivers ranked these topics according to their perceived importance. High ranking topics were taken forward into a value-weighting exercise which was presented to a national sample of caregivers. In this exercise caregivers were asked to allocate hypothetical research funding units (FU) across research topics as well to different areas of care (Prevention, Screening and Early Detection; Newly Diagnosed; Receiving treatment; Finished treatment; Relapsed, receiving Palliative care; Significant Others [e.g., family members, friends, caregivers]).

Results

Seventy five caregivers completed Delphi Survey 1, 45 completed Delphi Survey 2 and 252 completed the value-weighting exercise. In the value-weighting exercise, the research topic ‘Improve Access to Healthcare’ received the highest mean allocation of 23.42/100 FU (SD = 19.48), followed by ‘Improving Day to Day Functioning’ (mean allocation 17.37 FU [SD = 16.2]). The ‘Prevention, Screening and Early Detection’ area of care received the highest mean allocation of 27.47 FU (SD = 19.48).

Conclusion

This study highlights the research priorities of caregivers of children living with chronic health conditions. This information can be used to guide future research and funding decisions in paediatric chronic health conditions.