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

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

doi:10.1186/s40814-019-0517-3

Cited by 5 publications

(6 citation statements)

References 47 publications

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“…The CONSORT reporting checklist is provided as an additional file (see Additional file 1). The methods were provided in detail in the protocol [23].…”

Section: Methodsmentioning

confidence: 99%

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Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

Bjornstad

Cuffe-Fuller

Ukoumunne

et al. 2021

Pilot Feasibility Stud

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Background Parent carers of children with special educational needs or disability are at higher risk of poor mental and physical health. The need for a tailored, peer-led group programme was raised by parent carers, who co-developed the Healthy Parent Carers programme with researchers. This study aimed to test the feasibility of programme delivery in community settings, and the feasibility and acceptability of a randomised controlled trial design. Methods Participants were individually randomised with concealed allocation to a structured group programme and access to online resources (intervention), or access to the online resources only (control). Measures of wellbeing and secondary and economic outcomes were collected before randomisation, immediately post-intervention, and 6 months post-intervention. Descriptive statistics on recruitment and attrition, demographics, attendance, and fidelity of intervention delivery were analysed with feedback on the acceptability of the trial design. Results One hundred and ninety-three parent carers expressed an interest in taking part. Ninety-two participants recruited from across six sites were randomised (47 intervention, 45 control). Lead and assistant facilitators were trained and delivered the group sessions. Sixteen (34%) participants in the intervention arm did not attend any sessions, and attendance varied across sites and sessions. One participant withdrew post-randomisation, and 83 (90%) participants completed outcome measures at the six-month follow-up. Conclusions The study demonstrated that it was feasible to deliver the programme in community settings. The number of parent carers who expressed interest signifies the need for such a programme and the feasibility of recruiting to a definitive trial. Loss to follow-up was low. Further research is needed to explore ways to reduce barriers to participation in person and assess the feasibility and acceptability of programme content and delivery for more ethnically diverse groups, and potentially using interpreters. Given the Covid-19 pandemic and delivery format feedback, there is also a need to investigate remote or blended delivery strategies. Although the results indicate that a definitive trial is feasible, programme impact would be strengthened through exploration of these uncertainties. Trial registration ISRCTN, ISRCTN15144652, registered on 25 October 2018, ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.

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“…The CONSORT reporting checklist is provided as an additional file (see Additional file 1). The methods were provided in detail in the protocol [23].…”

Section: Methodsmentioning

confidence: 99%

“…Participants' use of health care, social care, and wider societal resources was measured using a studyspecific resource use questionnaire. Full details of the measures used are in the study protocol [23].…”

Section: Outcome Measuresmentioning

confidence: 99%

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

Bjornstad

Cuffe-Fuller

Ukoumunne

et al. 2021

Pilot Feasibility Stud

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“…The feasibility study aimed to assess whether the programme could be delivered in the community and evaluated the acceptability of a randomised controlled trial (RCT) design. 23 The trial ran between July 2018 and June 2020. Ninety-two participants were randomised: 47 to the HPC group programme (delivered in six community sites across Cornwall, Devon and Somerset) and 45 to the control group, which involved access to the HPC online resources only.…”

Section: The Feasibility Studymentioning

confidence: 99%

“…The strength of this research is that it has systematically followed key principles of intervention development 27 28 and refinement using a dynamic, iterative and creative process with extensive stakeholder consultation, where the developers have been open to change based on data collected in a series of iterations. 22 23 We examined how the intervention will be evaluated in the next phase of research and identified learning and key uncertainties to be addressed, such as blended (online and face-to-face) delivery of group sessions, commissioning and implementation. Reporting mixed methods data on participant views and experiences and the subsequent refinement process in feasibility studies is recommended.…”

Section: Programme Refinementmentioning

confidence: 99%

Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention

et al. 2021

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ObjectivesParent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the ‘Healthy Parent Carers’ (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement.Intervention, setting and participantsHPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male).DesignA preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial.ResultsHPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants’ expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery.ConclusionHPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme.Trial registration numberISRCTN151144652.

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“…The Family Faculty is made up of families containing children with disabilities who are living in the United Kingdom, and who are interested in the work being carried out by the Peninsula Childhood Disability Research Unit. 22,32 Members are invited to get involved in our research in a number of ways. 33 For example, they are encouraged to suggest research questions, get involved in project working groups, and make suggestions about the language we useincluding helping us to design plain language summaries.…”

Section: Patient and Public Involvement (Ppi)mentioning

confidence: 99%

What aspects of health and wellbeing are most important to parent carers of children with disabilities?

McGlinchey,

Harniess,

Borek

et al. 2024

Health Expectations

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IntroductionParent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important.MethodsA qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically.ResultsThirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: ‘self, identity and beliefs’; ‘social connections and support’ and ‘health‐promoting practices and outcomes.’ Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. ‘Self‐identity’ challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to ‘social connections’ reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of ‘health‐promoting activities’ because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds.ConclusionParent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory.Patient or Public ContributionOur team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.).

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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

Cited by 5 publications

References 47 publications

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention

What aspects of health and wellbeing are most important to parent carers of children with disabilities?

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