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Theme: CLAHRC - Evidence for Policy and Practice
Parent carers of disabled children tend to have poorer mental and physical health than other parents. Researchers and parent carers have co-developed a programme to improve the health and wellbeing of parent carers of disabled children.
The programme is led by parent carers and involves working with others in a group to encourage behaviours associated with better health and wellbeing. The behaviours are called CLANGERS: Connect, Learn, be Active, Notice, Give, Eat well, Relax and Sleep, and are based on a book by Dr Phil Hammond.
We want to see whether the programme can be delivered in the community through organisations that have links with parent carers. We also want to find out whether we can test the programme to see whether it improves health and wellbeing and whether it is good value for money.
We will randomly allocate parent carers to either receive the group intervention or to receive only the Healthy Parent Carer Guide information online. All parent carers will complete questionnaires before and after the programme and 6 months later.
We want to find out whether parent carers are willing to take part in a study like this, whether enough people sign up and stay to the end of the study, and whether the ways we measure health and wellbeing are appropriate.
If this study shows the group programme can be delivered and evaluated in the way we propose, we can plan a larger randomised controlled trial to test whether the programme improves parent carers’ health and wellbeing.
We will randomise participants to either take part in a 6-12 week group programme, which includes online materials (intervention), or to receive access to the online materials only (control).
Participants will complete measures of health and wellbeing before randomisation, 15 weeks after randomisation (i.e. after the intervention arm completes the group programme), and 40 weeks after randomisation. Participants and group intervention facilitators will also provide feedback on the programme throughout the study.
We will monitor recruitment on order to plan for definitive trial, including the required number of settings, trail durations, and resources. We will assess adherence and dose, and evaluate fidelity of delivery and participant engagement. We will collect participants' feedback on the programme content and delivery and the acceptability of the outcome measures. We will conduct interviews with participants in both study arms and a focus group with facilitators to provide insights into intervention training, delivery and experience.
The aim is that, following on from this feasibility study, the programme could be rolled out as part of a larger randomised controlled trial across England.
Bjornstad G, Wilkinson K, Cuffe-Fuller B, Fitzpatrick K, Borek A, Ukoumunne OC, Hawton A, Tarrant M, Berry V, Lloyd J, McDonald A, Fredlund M, Rhodes S, Logan S, Morris C. Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design. Pilot Feasibility Stud. 2019; 5:137
Katherine Fitzpatrick, Annemarie Hawton, Aleksandra Borek (University of Oxford)