Journal Article

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

McDonald, Annabel, Fredlund, Mary, Rhodes, Shelley, Borek, Aleksandra, Tarrant, Mark, Cuffe-Fuller, Beth, Wilkinson, Kath, Fitzpatrick, Katharine, Ukoumunne, Obioha C., Bjornstad, Gretchen, Berry, Vashti, Hawton, Annie, Logan, Stuart, Lloyd, Jenny, Morris, Christopher

2019

Overview

Background Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness. Methods We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups. Discussion This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme. Trial registration ISRCTN, ISRCTN151144652 , registered on 25 October 2018 ; ClinicalTrials.gov, NCT03705221 , registered on 15 October 2018.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Autism / Behaviour change / Biomedicine / Caregivers / Children & youth / Children with disabilities / Cost analysis / Data collection / Disabilities / Disabled children / Disabled persons / Families & family life / Feasibility studies / Feedback / Health care / Health Sciences / Intervention / Medical care utilization / Medicine / Medicine & Public Health / Parents & parenting / Patient and public involvement / Peer support / Physical fitness / Questionnaires / Research methodology / Researchers / Resilience / Resilience (Psychology) / Social aspects / Standard deviation / Statistics for Life Sciences / Stress / Study Protocol / Systematic review / Well being