Title: Healthy Parent Carers programme: feasibility study of a peer-led group-based intervention to improve the health and wellbeing of parent carers of disabled children
Funder: Department of Health and Social Care

Abstract: Background Parent carers of disabled children are at increased risk of mental and physical health problems. They experience specific challenges to maintaining good health that have implications for their wellbeing and their ability to care for their children. In response to these needs, researchers and parent carers have developed the Healthy Parent Carers programme. It is a peer-led, group-based intervention that encourages actions associated with health and wellbeing. Aims This study will test the feasibility of delivering the programme in the community, and the feasibility of evaluating the effectiveness and cost-effectiveness of the programme in a randomised controlled trial. Plan of investigation We will establish six delivery venues in the South West and identify and train facilitators. We will recruit 96 parent carers of children with special educational needs and disabilities aged up to 25 years to participate in a study comparing ways to improve the health and wellbeing of parent carers. After documenting informed consent and completed baseline measures, we will individually randomise participants, stratified by group delivery site (i.e. 16 to 24 per site), to either take part in a group programme, which includes online materials (intervention), or to receive access to the online materials only (control). The group programme will be delivered by trained parent carers with experience facilitating group interventions. The programme content is organised into 12 modules, which can be delivered over six longer sessions or 12 shorter sessions. Groups will consist of at least eight parent carers. The written materials for the 12 modules will be provided online. Demographics, including children s ages and conditions, will be collected at baseline. Participants will complete measures of mental health, wellbeing, health-related quality of life, health behaviours, patient activation, protective factors such as resilience, social connections, and concrete support, and use of health care, social care and wider societal resources. These data will be collected before randomisation (baseline), 15 weeks after randomisation (i.e. after the intervention arm completes the group programme), and 40 weeks after randomisation. We will monitor recruitment in order to plan for a definitive trial, including the required number of settings, trial duration, and resources. We will assess adherence and dose, and audio-record group sessions to 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 facilitators to provide insights into intervention training, delivery and experience. We will report numbers of participants recruited by site, source, and participant characteristics, and the proportion of completed assessments. Standard deviations and the correlation between baseline and follow-up scores on continuous outcomes, and estimates of the level of clustering within delivery groups in the intervention arm will be reported to inform the sample size calculation for the subsequent definitive trial. Qualitative data will be analysed thematically. Summary of potential benefits The intervention aims to improve the health and wellbeing of parent carers, who are at increased risk of psychological and physical health problems. If the programme delivery and evaluation are feasible in this study, we will design a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the programme and apply to the NIHR Public Health Research Programme for funding. The intervention delivery strategies are designed to be sustainable outside of research. Hence, if the programme is effective and cost-effective, it can be implemented as part of a public health strategy. The results will be shared widely through a coordinated dissemination strategy including scientific papers, plain language summaries, presentations for various audiences, social media, and via professional and parent carer networks.

Lay abstract: 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. Parent carers are given the Healthy Parent Carer Guide with information related to each session. The programme has been delivered once over six weekly sessions. Two parent carer facilitators led a group with seven participants. They felt the programme was valuable in building resilience and identifying specific strategies to deal with the challenges that parent carers commonly face. 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 propose assigning parent carers in a random way to either receive the full group intervention or to receive only the Healthy Parent Carer Guide information. 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 study to test whether the programme improves parent carers health and wellbeing.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE;MENTAL HEALTH