Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial

Abstract

Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS.Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or control (usual practise) on a 1:1 basis at cluster (family) level. Data were collected at baseline and 3 and 12 months' post-randomisation. The following feasibility outcomes were assessed: participant recruitment rates and effectiveness of recruitment pathways; retention rates; intervention adherence and fidelity; service provider recruitment rates and willingness to participate in a future trial; barriers and facilitating factors for recruitment, engagement, and intervention delivery; and feasibility of collecting outcome measures.Results: Seventy-four families were randomised to intervention or control (n = 37). Retention rates were 72% at 12 months post-randomisation, and completion of the proposed primary outcome measure (WEMWBS) was 51%. Recruitment of service provider organisations and facilitators was feasible and intervention implementation acceptable. Adherence to the intervention was 76% and the intervention was well-received by participants; exploratory analyses suggest that adherence and attendance may be associated with improved well-being. Health economic outcome measures were collected successfully and evidence indicates that linkage with routine data would be feasible in a future trial.Conclusions: The E-PAtS Feasibility RCT has demonstrated that the research design and methods of intervention implementation are generally feasible. Consideration of the limitations of this feasibility trial and any barriers to conducting a future definitive trial, do however, need to be considered by researchers.Clinical Trial Registration:https://www.isrctn.com, identifier: ISRCTN70419473.

Predictors of Access to Early Support in Families of Children with Suspected or Diagnosed Developmental Disabilities in the United Kingdom

“…Targeted interventions to improve caregivers’ knowledge and skills specific to accessing early support may also reduce disparities (cf. Cerebra, 2021; Coulman et al, 2021 ). However, ensuring services are more accessible is likely the most efficient action in terms of facilitating access to early support.…”

Early positive approaches to support (E‐PAtS): Qualitative experiences of a new support programme for family caregivers of young children with intellectual and developmental disabilities

“…The positive findings and limitations of this study, suggest the need for future research, particularly with regard longer‐term follow up of families who have attended groups and careful exploration of implementation issues through methods of process evaluation (see Moore et al, 2015). The experiences of caregivers, as captured in this study, have prompted exploration of quantitative outcomes and feasibility testing to inform an effectiveness trial of E‐PAtS (see Coulman et al, 2020; Coulman et al, 2021). It will also be important to explore processes associated with E‐PAtS delivery further, through detailed investigation of group dynamics and programme mechanisms and to explore the experiences of facilitators themselves.…”

“…The experiences of caregivers, as captured in this study, have prompted exploration of quantitative outcomes and feasibility testing to inform an effectiveness trial of E-PAtS (see Coulman et al, 2020;Coulman et al, 2021). It will also be important to explore processes associated with…”

Positive family connections for families of children with a developmental disability: Cluster randomized controlled trial.

“…Data on usual services accessed were collected for participants and their family member with a developmental disability using the Client Service Receipt Inventory (Beecham & Knapp, 2001) adapted to be suitable for families in recent research (Coulman et al, 2021). The measure consists of items assessing use of community, hospital, and nonprofit health and care services, and prescription medication use.…”