‘I don’t feel like I’m in this on my own’: Peer support for mothers of children with intellectual disability and challenging behaviour

Abstract

This article reports on the peer support experiences of mothers with a son or daughter with intellectual disability and challenging behaviour. Engagement in parent peer support programs can improve family quality of life and may have multifaceted benefits at the interpersonal, intra-individual self-change and sociopolitical levels. Thirteen mothers were interviewed about their experiences of participating in a parent peer support program. Thematic analysis focused on the process elements of the program that contributed to its effectiveness in providing support to parents. There were three process-related themes: the role of a paid coordinator, diversity of engagement strategies and matching of peer support partners. Mothers appreciated the opportunities provided to engage in a range of strategies tailored to individual preferences, time and capacity constraints, supported by the paid coordinator. One-to-one peer support proved difficult to sustain given the challenges mothers faced in their day-to-day lives.

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

“…Social support has been described as one of the most important protective factors for maintaining the health and well-being of parents of children with ID: It has been found that those who received formal or informal support were less stressed, more optimistic, and manifested increased levels of well-being and satisfaction with life [56,77,[89][90][91][92]. Thus, support programs or social networks for parents and their child with ID can improve family quality of life and help achieve multiple benefits both at the interpersonal and intraindividual levels [93,94]. In this sense, Bray, Carter, Sanders, Blake, and Keegan [95], found that the use of peer support programs by parents with children with ID, reduced the levels of psychological distress these parents suffered and strengthened their ability to cope with bringing up the child.…”

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

“…Participants felt able to speak openly and discuss intimate areas of concern. These experiences resonated with reports from families who have accessed other specialist programmes and systems of peer-support (e.g., Borek et al, 2018;Dew et al, 2019;Dodds & Singer, 2017;Gore & Umizawa, 2011;Shilling et al, 2013) and were referenced in relation to engagement, learning and emotional support throughout sessions.…”

Autopsy of a telephone‐based peer support intervention: Exploring participants' perspectives of and experiences with a self‐management support model for adults with type 2 diabetes from speciality care settings

“…Findings suggest that the quality of the participant‐PL relationship is the main driver of intervention satisfaction and depends largely on how well matched the participant and PL are. The importance of a favourable match and the process in which matches are formed has also been highlighted in other peer support interventions targeting T2D and other health conditions 15,24–27 . In these studies, researchers paired individuals based on similarities in sex, 24 age, 24–26,28 sociocultural background, 27 geographic residence, 27 availability, 27 disease characteristics 15,27 and hobbies/interests 25 …”

“…Few peer support trials in T2D have factored in person‐centred qualities in the matching process. Moreover, the ‘match‐maker’ role has been assumed, primarily, by the research team rather than the participants themselves 15,24,26,27 . In this era of person‐centred and collaborative care, the power of decision‐making should be placed in the hands of participants as they know best what their own support needs, preferences, and priorities are.…”