Peer support for parents of children with complex needs
Cat Strawa, Gina-Maree Sartore
Peer support aims to increase the support available to parents of children with complex needs and to reduce feelings of isolation or stigma by introducing parents to others who can understand their experiences.
There is limited robust research evidence on the efficacy of peer support due to limitations in the study methods used to evaluate peer support programs but some studies have shown small improvements in parent outcomes.
Qualitative evidence indicates that parents value peer support and can experience benefits such as feeling understood and building resilience.
Larger and more rigorous studies are needed to understand the effects of peer support interventions for parents of children with complex needs.
Parents of children with complex needs can experience extreme pressure in daily caregiving activities and responsibilities. Research shows that these parents are more likely to experience increased stress and lower wellbeing than parents of children without complex needs (Sartore, Pourliakas, & Lagioia, 2021). Complex needs can include any acute or chronic physical or psychological condition with a relatively long-lasting course or effects, such as disability, pervasive developmental disorders and learning difficulties (Sartore et al., 2021).
Peer support may be used by parents of children with complex needs to improve their social connections and support network (Sartore et al., 2021). This short article uses plain language to summarise the findings of a systematic review on peer support for parents of children with complex needs by Sartore and colleagues, 2021. It also provides some insights into parent experiences of peer support from Australian qualitative research. The article also suggests considerations for practitioners who provide or recommend peer support.
What are peer support interventions for parents of children with complex needs?
Peer support is support provided to a person by other people who share important experiences, circumstances or characteristics. Peer support is usually intended to increase the support available to parents and reduce feelings of isolation or stigma by introducing them to others who can understand and appreciate their experiences (Shilling et al., 2013, cited in Sartore et al., 2021).
Peer support interventions for parents of children with complex needs usually involve the following kinds of activities:
- Support groups for parents/carers. These may be online or face-to-face, with or without a facilitator to lead the group.
- Mentor arrangements (‘peer-to-peer’) where a ‘novice’ parent or carer is matched with a more experienced parent or carer (e.g. someone whose child has been newly diagnosed is matched with someone who has been living with their child’s diagnosis for a relatively long time).
Peer support can be delivered in community, outpatient or hospital settings, online or by telephone (Sartore et al., 2021). Peer support programs may be provided by government-funded services and community or not-for-profit organisations; sometimes, they may be set up informally by people in the community. Links to further reading and resources on peer support in Australia are provided at the end of this article.
What does the evidence tell us about peer support interventions?
At present, there is limited robust evidence on the efficacy of peer support due to limitations in the study methods employed to evaluate peer support programs (Satore et al., 2021). This was a key finding from a systematic review (Sartore et al., 2021) of peer support interventions for parents and other family carers of children with complex needs that investigated the effect of peer support interventions on several parent outcomes, including parents’ psychological distress, confidence and self-efficacy, feelings of coping, quality of life, family functioning, perception of social support and confidence and skills in navigating services. The review included 22 studies that compared peer support to either usual care or another intervention (Sartore et al., 2021).
Some individual studies showed small improvements in parent outcomes following a peer support intervention; however, the review found that it was not certain that the peer support had any significant effects on those outcomes. This was largely due to the lack of strong evidence for significant effects; most studies on this topic were small, showed risk of bias or varied greatly in their design and results. Larger and more rigorous studies are needed to understand the effects of peer support interventions for parents of children with complex needs (Sartore et al., 2021).
Despite the lack of conclusive evidence on the effects of peer support interventions, qualitative research shows that some parents value peer support (Sartore et al., 2021). While qualitative research with small groups may not be generalisable for the wider Australian population of parents, it can provide helpful information about individual parent’s experiences of peer support and what helps them access it.
Australian qualitative research (Meltzer, Dowse, Smith, & Dew, 2020) with family members of people with disability has identified several benefits of peer support. For participants in peer support, these benefits include:
- exchanging useful information about experiences and lessons learnt with other families and about practical issues such as managing services and supports
- giving and receiving motivation and encouragement to cope with challenges or support self-confidence and personal development
- social interaction and opportunities to develop friendships with peers
- understanding and feeling understood by others with similar experiences
- feeling part of a community
- building capacity to work together; for example, working with others to develop personal skills or working as a group to petition for change in the wider community
- building resilience and improving wellbeing.
According to parents, peer support works best when peers and group facilitators or coordinators (if used) share similar experiences or circumstances. These can include a shared experience of a child’s condition and/or a similar social context. Research also suggests that parents appreciate having peers validate their own experiences (Sartore et al., 2021) and coordinators to help organise and unite the group (Dew, Collings, Dowse, Meltzer, & Smith, 2019).
Parent-reported challenges with peer support include difficulties finding the time to participate, mismatched personalities and expectations within groups, and feelings of distress hearing other families’ experiences (Meltzer et al., 2020). Parents also identified practical issues such as access to child care and transport as important for enabling face-to-face peer support (Meltzer et al., 2020; Sartore et al., 2021).
Research on peer support interventions for parents of children with complex needs is still emerging. There is also no information about the characteristics and backgrounds of participants in peer support, such as gender identity, relationship status, CALD background, LGBTQIA+ identity or education level, or how these affect their experience of peer support (Sartore et al., 2021). Given that there is evidence that participants value the perceived similarity of their peers in peer support interventions, understanding who accesses peer support groups and how identity can shape individual and group experiences may be important for understanding their effects and for setting up peer support programs.
What are the implications for practitioners?
Research on parent experiences of peer support interventions suggests that the following may be useful when providing peer support to families with a child with complex needs:
- Place participants and/or mentors in groups with people with similar experiences of their child’s condition and/or with similar social backgrounds (Sartore et al., 2021).
- Consider providing a paid coordinator to help with group organisation and to unite participants (Dew et al., 2019). Coordinators can also facilitate and mediate support groups.
- Include participants and facilitators/coordinators who are approachable and available and who can provide practical tips and information in addition to empathy and support (Sartore et al., 2021).
- Consider practical issues that may affect participation such as the timing and location of face-to-face programs in relation to participants’ child care and transport needs (Meltzer et al., 2020; Sartore et al., 2021).
- Consider providing multiple engagement options (e.g. online, telephone or face-to-face) to support families to stay engaged with the program as the pressures of family life fluctuate (Dew et al., 2019).
- Conduct robust program evaluation of peer support interventions to understand outcomes for parents and families and support the evidence base.
Parents of children with complex needs may access peer support interventions to increase their support networks and connect with other people who have similar experiences and backgrounds to them. The research evidence on the effectiveness of peer support interventions for parents of children with complex needs is unclear. However, reports from parents who access peer support suggest there may be some benefits and that parents perceive it to be valuable.
How this resource was developed
This short article was developed as part of a series of resources for the Child Family Community Australia (CFCA) information exchange. These resources synthesise the findings of a rapid evidence review of research on interventions designed to support families with a child with disability. Consultations with researchers and disability service providers, including people with disability and parents of children with disability, informed the scope and design of the review.
This resource also draws on the findings of a systematic review conducted by Sartore and colleagues (2021) titled Peer support interventions for parents and carers of children with complex needs. This study was published in the Cochrane Database of Systematic Reviews on 20 December 2021. The systematic review included randomised and cluster randomised controlled trials (RCTs) and quasi‐RCTs involving parents and other family carers of children with complex needs. Complex needs were defined in the broadest possible terms with no restrictions.
Further reading and resources
- MyTime is a free peer support group for parents and carers of children with disability or other additional needs. Parents can meet others with similar experiences with a trained facilitator present.
- Carer Gateway is an Australian Government program providing free services and support for carers, including opportunities to attend in-person peer support groups or join moderated online community forums.
- This information page, from the Association for Children with a Disability, provides links to playgroups, service coordination support, peer support, podcasts, multicultural support groups and disability specific organisations.
- This list of organisations and resources, from the Centre for Excellence in Child and Family Welfare, provides links to parent and carer support groups and disability advocacy organisations.
- This guide, from AIFS Evidence and Evaluation Support, provides information and templates for practitioners developing an evaluation plan for a program or service for children and families.
Dew, A., Collings, S., Dowse, L., Meltzer, A., & Smith, L. (2019). ‘I don’t feel like I’m in this on my own’: Peer support for mothers of children with intellectual disability and challenging behaviour. Journal of Intellectual Disabilities, 23(3), 344–358. doi.org/10.1177/1744629519843012
Meltzer, A., Dowse, L., Smith, L., & Dew, A. (2020). A framework for interconnected benefits of peer support for family members of people with disability. Australian Journal of Social Issues, 56, 579–595. doi:10.1002/ajs4.130
Sartore, G. M., Pourliakas, A., & Lagioia, V. (2021). Peer support interventions for parents and carers of children with complex needs. The Cochrane Database of Systematic Reviews, 12(12), CD010618. doi.org/10.1002/14651858.CD010618.pub2
Cat Strawa works in the Child Family Community Australia team at the Australian Institute for Family Studies (AIFS).
Dr Gina-Maree Sartore is a Senior Research Specialist at the Parenting Research Centre.