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

Abstract

Background Early Positive Approaches to Support (E‐PAtS) is a co‐produced and co‐facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities. Method Thirty‐five caregivers who had attended E‐PAtS groups took part in individual interviews or focus groups. Caregiver experiences concerning attendance of E‐PAtS were explored, in relation to process variables and perceived outcomes. Interviews were thematically analysed. Results Three major themes were identified: our group, evolving emotions, and positive approaches. Being with and being supported by other families was very important to caregivers. Families reported increased confidence and greater realisation of the need for self‐care. Children were reported to show fewer behaviours that challenge and increases in adaptive skills. Findings corresponded to mechanisms and outcomes in the E‐PAtS logic model. Conclusion E‐PAtS shows promise as one way families and children with Intellectual and Developmental Disabilities can access early years support.

An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome

“…Remote online and mobile interventions may be uniquely viable solutions to address these barriers as they remove the time and cost needed to travel, greatly reduce the time caregivers will need to secure alternative care for their family member with 22q11DS and will not require the caregiver to commit to lengthy time apart from their family. These barriers are all commonly cited in other research studies by caregivers of family members with complex needs as the reasons they cannot access otherwise effective interventions (Blom et al 2013;Chakraborti et al 2021;Gore et al 2022). Moreover, all respondents in our sample indicated an interest in a potential online intervention.…”

“…2021; Gore et al . 2022). Moreover, all respondents in our sample indicated an interest in a potential online intervention.…”

Positive family connections: co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic

“…Of particular relevance for this cohort, working co-productively helps lessen the “them-and-us” positioning of family carers in relation to professionals that often causes them considerable stress (Griffith and Hastings, 2014). Co-production offers family carers valued roles which can help to break down others’ negative attitudes towards them (Gore et al , 2022) and provide meaningful, paid work.…”

“…Furthermore, establishing groups with other families in a similar situation may not only reduce isolation but also offer a chance to share beneficial strategies and perspectives that can support well-being, thereby acknowledging the reciprocal nature of helping others along with being helped by others (cf. Gore et al , 2022).…”

‘Different things at different times’: Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both

“…These include mindfulness, acceptance and commitment approaches (Flynn et al, 2020; Reid et al, 2016), as well as programmes based on the principles of cognitive behavioural therapy (Feinberg et al, 2014) and positive psychology (Dykens et al, 2014). A small number of other programmes have combined wellbeing support for carers with support that focuses on the developmental needs of their child (e.g., Gore et al, 2022).…”