Parental Perspectives on the Barriers and Facilitators to Successful and Meaningful Peer-Support Programs


Authors

Meaghan Edwards

Kora Brown

Katrina Milaney

University of Calgary
Cumming Medical School
Community Rehabilitation and Disability Studies
Calgary, Alberta
Canada


Corresponding Author

Correspondence concerning this article should be addressed to Dr. Meaghan Edwards, Canada

Email: Dr. Meaghan Edwards

Abstract

Children with disability and their families often face disabling sociocultural conditions including inadequate and complicated service climates, inaccessible physical environments, and social and economic exclusion. Peer support is a relational, family-centred model aimed at creating a supportive community in which families can share experiences and find mutual avenues to support and empowerment. This study utilized a critical disability lens to explore the barriers and facilitators to successful and meaningful family-centred peer support programs. Eight family members who were primary caregivers of a child with an intellectual and/or developmental disability and members of a peer-support group at one Calgary, Alberta based community agency participated. Two of the participants were also peer-support group facilitators at the agency. Interview data was coded and themes extracted through an adapted form of constant comparative analysis. The barriers to meaningful peer support programs were a lack of funding, transportation, space, and childcare services. Facilitators to meaningful experiences in peer support programs were skilled, knowledgeable, and experienced facilitation, the establishment of safe environments, and the building of meaningful connections. Eight concrete guidelines based on the themes were suggested including access to sustainable yet flexible funding, a formal role for peer support facilitators in an organization, and the grounding of peer support in principles of a family-centered approach, collective social identity, and peer advocacy.

Keywords: disability, peer-support, parent peer-support, practice, marginalized families, family challenges, critical disability studies

Introduction

The rate of diagnosis of childhood disability, whether physical or intellectual, has been steadily increasing in recent years and is argued by many to be due to expanded diagnostic criteria and diagnosis at earlier ages (Matson & Kozlowski, 2011). Children with disability often require support with the activities of daily living and the responsibility for the provision and organization of such support, in the current climate, usually falls to the family. The disabling social and physical environments often encountered by people with disability and their families make planning for formal and informal services and activities uniquely challenging. People with disability and their families frequently contend with inadequate and complicated service climates, inaccessible physical environments, and social and economic exclusion (Anaby et al., 2013; Seligman & Darling, 2017).

Many families struggle to understand the impact of a disability diagnosis on the family and report limited or less than helpful support from medical professionals in terms of linkages to community-based supports or other parents (Liptak, Kennedy, & Dosa, 2011). This, coupled with significant cuts in funding for community-based supports for families in Canada (Chouinard & Crooks, 2008), means there may be a need for diverse approaches and alternate understandings of what families need. One approach rooted in shared experiences and meant to reduce power difference between medical providers and service recipients, is peer support (Kingsnorth, Gall, Beayni, & Rigby, 2011). There is no single delivery model for peer support programs but generally, peer support models may be defined as communities of common interest where people gather, in-person or virtually by telephone or computer, to share experiences, ask questions, and provide emotional support and self-help (Sartore, Lagioia, & Mildon, 2013).

Peer support for parents of children with disability has been shown to reduce social isolation (Ainbinder et al., 1998), positively impact family relationships (Solomon, Pistrang, & Barker, 2001), and improve health outcomes (Arai, Nagatsuka, & Hirai, 2008). Organized peer support programs for families may help develop meaningful practical and emotional support networks, provide access to community, opportunities for collective action and advocacy (Edwards, Parmenter, O’Brien, & Brown, 2018). Given the importance and efficacy of peer support programs for parents of children with disabilities, researchers have been exploring the characteristics and challenges of the model (Blake, Bray, & Carter, 2019). Further research is needed in order to further develop practical guidelines for facilitators and organizers of peer support programs (Jackson, Steward, Roper, & Muruthi, 2018).

The purpose of this study was to utilize a critical disability lens to explore, using qualitative methods, some of the barriers to and characteristics of a successful peer support program for parents of children with disabilities. We aimed to understand, from parent perspectives, the elements of a meaningful peer support experience. Results were used to posit some guidelines for consideration in the creation of a peer support program.

Background

Theoretical lens

Much of the existing research on interventions related to disability, including peer support programs for families, comes from social work, psychology and medicine and uses a form of the medical model, framing disability as a deficit or dysfunction in the individual (Durand, Hieneman, Clarke, Wang, & Rinaldi, 2013; Riley & Rubarth, 2015). Typically, these studies explore the role of peer support programs in ameliorating the perceived negative impacts of disability such as financial burden, stress, poor health outcomes, and family relationship breakdown (Sartore, Lagioia, & Mildon, 2013; Shilling, Bailey, Logan, & Morris, 2015). Studies from the critical disability field, on the other hand, resist the notion of disability as an individual deficit and view the inadequate and inappropriate responses of societal structures to the various and diverse needs of the population as the main disabling element in the lives of individuals diagnosed with disability and their families (Oliver & Barnes, 2012; Thomas, 2007). The concept of family resilience is not seen solely as an individual family’s adaption to difficult circumstances but also as a relational, contextual community responsibility linked to a need for the dismantling of disabling structures (Muir & Strnadová, 2014; Runswick-Cole & Goodley, 2013). Studies on peer support from this perspective, while fewer in number than those in the medical tradition, tend to emphasize the importance of relationships, the value in empowering families (Klein et al., 2019; Scott & Doughty, 2012), the potential for collective identity and social action (Naslund, Aschbrenner, Marsch, & Bartels, 2016), and the significance of challenging professional and societal attitudes that devalue the voices of people with disability and their families (Bell, Fitzgerald, & Legge, 2013).

A critical disability approach provides the theoretical framework for this study, yet we have chosen to also include literature from the medical model in the conceptual background to the study. We see peer support as an area with some commonalty across theoretical perspectives. It is our position that the potential for collective action, the opportunity for focus on community, and the relational nature of peer support programs suggest the design can and should be explored through a critical disability approach. The following literature review includes findings from both medical and critical disability perspectives and explores some of the elements influencing the success of a peer support model regardless of the theoretical lens under which the iteration of the model was designed and examined.

Literature Review

Whether the challenges emerging with a disability diagnosis are seen to be connected to an individual’s condition, exclusionary societal structures, or some combination of these, researchers agree that families must navigate several difficult experiences when they begin the journey of raising a child with a disability (Bray et al., 2017; Brown, Kyrkou, & Samuel, 2016). These often include numerous medical interventions, hospital stays, potential career interruptions, interaction with multidisciplinary healthcare and community-based services, and financial strain. Families may be asked to inhabit the contradictory positions of fighting for their child’s rights and personhood while simultaneously emphasizing the child’s impairments in order to secure funding and services (Goodley & Runswick‐Cole, 2010). Interacting with multiple services and professionals can become complex and overwhelming for parents and can result in anxiety and stress for the family (Riley & Rubarth, 2015).

Peer support programs have been suggested to be key elements in successfully navigating some of these challenging experiences (Dennis, 2003). Peer support has an element of mutuality and reciprocity in receiving and giving support among individuals who have had similar experiences (Lalayants, Baier, Benedict, & Mera, 2015). This reciprocity in the relationship contributes to a sense of satisfaction in finding someone who will recognize and appreciate shared expertise (Ainbinder et al., 1998). Peer support programs are designed to help create a supportive and comfortable environment to explore mutual experiences (Mccabe, 2008). Peer support programs can lead to reduced feelings of loneliness and isolation, emotional stability, and the enabling of personal growth (Shilling, Bailey, Logan, & Morris, 2015). One of the most important elements of a peer support model appears to be the ability of parents to share their feelings, worries and anxieties with another parent who has travelled a similar journey (Bray et al., 2017)

Despite the apparent benefits, participation in organized peer support programs is not always a positive experience for families. Professional planning that includes peer support is often within the increasingly prevalent family-centred model. This model has been described as collaboration between service providers and families to include shared decision making, build on family strengths, ensure flexibility, increase access, and provide honest and consistent communication (Moore et al., 2015; Nicholas & Keilty, 2007). The rhetoric of this approach, however, does not always reflect reality with many services continuing to view the family as the client and themselves as the expert despite the discourse around the importance of privileging family voices and decisions (Bruder, 2000). The implications of this approach may further entrench a division or imbalance of power and decision making, favoring medical professionals and devaluing families.

In the critical disability field, concerns have been raised that peer support may be rooted in beliefs that we need to care for people instead of caring about them (Scott & Doughty, 2012). It has been suggested that the overuse of the word support rather than words like relationships further emphasizes a deficit approach to disability and implies a one-way transaction in which parents receive help from others rather than having their reciprocal contributions valued (Edwards, 2016). There are also cautions around the potential for the under-valuing contributions of mothers and the lack of recognition for the active role parents might play in advocacy (Ryan & Runswick‐Cole, 2008). Despite these challenges, some disability scholars argue that parents report improved feelings of empowerment and self-determination in peer support models and an evaluation of a parent peer support group in Australia called Now and Next (Dodd, Saggers, & Wildy, 2009), reports that parents build their capacity as natural leaders and peer support creates opportunities to identify, recruit and train future leaders which helps with sustainability of the program. Results from this project also show that with a strong sense of community amongst their peers with parents can creating conversations with professionals that help bring about new outcomes for families (Heyworth, Mahmic, & Janson, 2016).

Peer support seems to have great potential to empower parents, alleviate stress, prevent isolation, foster community and encourage positive action, yet the possible pit falls must be further understood and explored, especially from a parent rather than a purely professional perspective. The barriers and facilitators to relational, family-centred models of support that meaningfully empower families need to be examined in more detail in order to ensure the model does not remain fixed within a deficit framework and emerges successfully from rhetoric to practice.

The research questions for this study were:

  • What are the barriers to a meaningful peer support program?
  • What are the key elements in a successful, meaningful peer-support program?
  • What guidelines can be used as potential ‘promising practice’ in setting up, maintaining, and ensuring a meaningful peer-support experience?

Method

Qualitative research involves sharing of experiences and conditions of individuals’ lives in real-world conditions, ensuring that the representation of the views is solely of the participants, and provides insight into a concept that is continuously advancing (Yin, 2015). We took up a qualitative approach for this descriptive study, using focus groups for our data collection. Focus groups have been used successfully in the field of critical disability studies to examine the experiences of families (Neely-Barnes et al., 2010). Research in the field suggests that focus groups are emerging as a valid and important data collection technique, especially in studies privileging the voices of marginalized groups (Rodriguez, Schwartz, Lahman, & Geist, 2011).

Participants

Eight family members who were primary caregivers of a child under the age of 18 with a diagnosed developmental and/or intellectual disability volunteered to participate in the study. The participants belonged to peer-support groups in one community-based organization located in Calgary, Alberta, Canada. Six mothers, one grandmother, and one grandfather volunteered. Two of the eight participants were also facilitators of these same peer-support groups. In this paper the participants are referred to as participants or simply the parents. Participants have been assigned codes to ensure anonymity. At the recruitment stage, information sheets were electronically emailed to a contact person within the selected organization, who then distributed the information sheets to parents and facilitators who were currently involved as members of the peer support program. Ethics approval was granted from The University of Calgary Conjoint Health Research Ethics Board.

Data Collection

We hosted two focus groups at the community agency. We shared preliminary findings with staff at the community-based agency as a member check, and included feedback and advice on the development of potential guidelines. Participants were guided through a semi-structured interview schedule where the student investigator took hand written notes and recorded and later transcribed the discussion for analysis purposes. Questions were designed to elicit the experiences of family members in the peer support group and included: What was it like to integrate into the peer support system?; What do you think are the key characteristics of an effective and successful experience in a peer support group for families with a child with a disability?; Over your time in the peer support group what changes have you noticed in yourself, your family or your child?

Data Analysis

The data collected from the audio recordings were transcribed manually and additional handwritten notes were taken during the focus groups. Some analytic approaches traditionally used in grounded theory (GT) were adopted, although our study, with its pre-existing critical disability framework was not of a GT design. Strauss and Corbin’s (1997) guidelines for coding were consulted as well as an adapted constant-comparative analysis method (CCA) of iteratively comparing new codes with previous codes as they emerged (“Constant Comparison,” 2004). Although CCA, with its generation of theory through systematic and explicit coding and analytic procedures, is traditionally used only in GT (Glaser & Holton, 2004), qualitative researchers are adapting the method to be used in studies with existing theoretical frameworks (Fram, 2013). As suggested by Creswell & Creswell (2009) for studies with a distinct framework, a combination of open coding and pre existing categories were used to interpret the data. In this way, the transcripts were read and reread by the researchers and the data were iteratively organized into codes, axial codes, and finally selective codes, presented in our results as themes.

Results

Themes emerging from the focus groups suggested barriers to successful peer support programs were related to financial and accessibility issues. These were categorized as funding, transportation, space, and childcare services. Primary characteristics for meaningful peer support programs were skilled, knowledgeable, and experienced facilitation, the establishment of a safe environment, and the building of meaningful connections.

Barriers

Funding

Financial considerations for the peer support program included securing a space, paying any required staff onsite, providing refreshments, and/or costs associated with training and/or activities. Having an accessible space was a primary cost consideration. One suggestion to overcome financial barriers was “sponsorship funding” (P8), or funds from the private sector, as this type of funding was often very flexible in what it could be used for, what needed to be reported back in terms of program outputs and outcomes and often lead to a reciprocal relationship between donor and organization.

Transportation

An important barrier for people who were interested in attending peer support programs was access to transportation. Not driving or not having access to a car was linked to individuals having difficulties attending regularly. One participant noted that if a group member “[does] not drive…that’s a big barrier” (P8). Flexible yet consistent delivery was suggested as a way of addressing this barrier by offering peer-support group times at various points in the day, when sharing rides or using public transportation might be easier, such as “one evening option and one morning option” (P8). An additional suggestion was to arrange peer support groups on a consistent day throughout the month. These allowed for easier arrangement for transportation based on each family’s needs.

Space

When considering location, finding an ideal location was important, and space impacted interactions within the group. According to participants, the number of people attending a group on any given day could fluctuate substantially. Numbers ranged from one parent or care-giver to twenty or more. This affected participants in two primary ways. Feeling overcrowded with too many people in a small space was a concern and reduced perceptions of safety and comfort. A group perceived as being too small in a large space seemed, on the other hand, to increase the unwanted pressure on attendees to actively engage in group discussion. There was a need to find a room that could be adapted to the group size and made comfortable no matter the number of attendees.

Childcare

An issue specific to parents was access to affordable childcare. This emerged as the most significant barrier, primarily because implementing the most viable solution was quite complex and had not as yet been worked out perfectly at the organization. Participants felt that if free/affordable childcare could be offered onsite while the peer support program was underway, this would ensure they could attend regularly. This design would require trained staff and “resources and the space” (P8). Staff would need to be able to support children with “different disabilities and at different ages” (P8). The space would need to include activities and toys but likely also, regulations and licensing. Some parents recognized that without consideration of these issues, onsite childcare might impact their ability to focus on the program. “[parents] might [become] distracted so they can’t focus” (P8). The childcare element would need to be planned out carefully since the situation was characterized as “really a lot to manage” (P7) and remained a work in progress at the organization.

Meaningful Peer Support

The key elements of a successful, meaningful peer support program were skilled, knowledgeable and experienced facilitation, the establishment of safe environments, and the building of meaningful connections among the parents.

Skilled, Knowledgeable, and Experienced Facilitation

It was essential for a facilitator to share the common experience of being a parent of a child with a disability. Participants indicated that the facilitator running peer-support programs needed “lots of experience, whether it’s personal [or] professional” (P2). This ability increased the likelihood that facilitators and parents could relate to one another which allowed for trust and rapport built from shared understanding. It was noted that a facilitator “[has] to have a child with special needs…there [must] be an understanding there” (P7). Group members had to understand “that when [they] facilitate…there is no judgement coming from [them]” (P7) because they themselves have been in similar circumstances with their own child. This opinion was shared among the facilitators and the other parents.

Participants felt it important that the peer-support group be organized and facilitated by an individual who had some expertise in formal facilitation so “we all have the opportunity to share and one of us doesn’t take over” (P2). This professional facilitation element was seen as essential and prevented the group from being “just another parent-led” (P2) peer-support group. Participants noted that skilled and knowledgeable facilitation from someone who was also a parent meant that the facilitator had qualities and skills that included: recognizing the importance of patience and empathy, building active listening skills within the group, building good advocacy skills and being able to engage in crisis management. As one participant said:

"There’s support at a time of crisis when I thought I was losing my mind and my family, it was peer support that…got me through. My family is intact today because of the peer support that I got in crisis (P2).

It was also noted that facilitators had have a strong knowledge of services and supports in the community and should have demonstrated skills in terms of information and resources being organized and provided in an appropriate manner. In this way, a facilitator could “guide parents to the right path without [the parent’s going] …backwards and forwards” (P4) when navigating the myriad of services and resources. “If I have something [I need help with] I’m in place where there’s somebody that’s trained and has all the availability to send me in the right direction for resources (P6)”.

Another suggestion was ensuring the facilitator had a formal role within an organization. It was suggested this would help ensure consistency in their participation and availability. Participants suggested that a facilitator having a formal role would also ensure professional standards were followed. One participant suggested when a facilitator is attached to “a proper…paid organization…there’s [a] standard that [is] adhered too” (P6), and this can bring a sense of consistency and dependability to the group. The recognition of the value of the role seemed important and reflected the commitment required in expert facilitation. A facilitator pointed out, “sometimes it takes a lot of work to follow-up with parents…to keep putting that suggestion in their minds and to hit that window of time where they are ready for it (providing something) that tips the scale…” (P8).

Establishing boundaries was also discussed as important by the parents who were also facilitators. This could include facilitators own self care and “learning where [to]…set [their] boundaries” (P8), as well as “how much…to step out of the box” (P7). It was suggested to be difficult but important for a facilitator to know when to let go and create distance from difficult circumstances. A facilitator shared the need for a formal aspect to the role in order to establish these boundaries. “There has to be an understanding there that even though I have a child with special needs, and she has a child with special needs, our journeys are different” (P8). It was also essential for the facilitator to establish trust in a professional manner so that parents could feel comfortable sharing information they may not wish to share with the larger group. As one non-facilitator parent suggested “even if a parent had a very personal problem that they cannot share with the group they [can] come speak and to [a facilitator]” (P7)

Establishment of Safe Environments

A safe environment meant that the peer-support program upheld the highest standards of confidentiality and privacy to encourage parents to share their thoughts openly and without judgement. This was described as an environment with a welcoming home-like feeling that promoted the sharing of stories, questions, and thoughts. A parent should know that their peer-support group is “very confidential” (P3); one parent described, [You] go into a room and [everyone’s] got their own problems, [but] you’re allowed to get it off your chest…and you know it’s not going to go anywhere out the room, and you’re with people who understand (P3).

A safe peer support group was described as a place where “everybody gets the chance to speak and everybody gets the chance to share and there’s no judgement” (P6). Parents of a child with a disability were suggested to frequently encounter a lack of safe spaces in their interactions with the disability sector and valued the peer support group as a place apart from these types of encounters. As a parent relayed “We are connected with…individuals, resource[s], organizations, government…and there’s often a judgement, there’s no judgement in peer support” (P2).

Building of Meaningful Connections

In peer-support approaches, parents could “come and share with people who understand” (P7) because “[their] story matters” (P8). Parents talked about feelings of loneliness, judgement, and guilt following their child’s diagnosis. Participating in a peer support program, meant they were in an environment where they could meet other parents with a similar story. This helped them develop deep and meaningful connections with each other. One participant expressed that the peer support group helped them to begin to feel less isolated and shared the following:

“I stopped going out (after my child’s diagnosis). I feel alone, I feel being judged…but after a couple [of] months, I saw that I have to, I can’t just cry and blame myself in the house, I have to go out” (P1).

In a peer-support group, parents felt they were able to build relationships easier than outside of the group and suggested “the chances of…forming a better connection [are] greater (than if one did not attend)…” (P8). These relationships often extended outside of the peer-support setting itself. Friendships between parents developed, allowing for extended social relationships and practical and social supports. The parents emphasized the importance of the group to building essential connections. As described by one participant:

“If somebody asked me what was the most important thing I ever did, as a mother with a child with special needs… it was connecting with parents. That was the most important thing I could [have] done because there is nothing that compared to…peer support”. (P7).

The sharing of stories and building of connections also helped families feel a sense of contributing and assisting other parents. A participant expressed the following:

“I’ve always gained a great deal from hearing all the different stories of different people, that they’re not just living my world, they’ve also got maybe extra challenges in some ways and less in others…I hope to think they would gain from my stories”. (P6)

Feelings of assisting others and a sense of belonging and collective experience seemed key to the success of the peer support program. “It feels good for them to be able to [share] that [because] it empowers them (other parents)” (P8) and allows the parent to “feel that they’re helping others” (P8).

Making connections also allowed for sharing of resources and information that assisted in advocacy and navigation of service climates, “the type of information that can be shared at a [peer-support] group is qualitatively different than the type of information that can be shared from a professional” (P8). Information and resources from a peer-support group was something special that was empowering and unique to peer support. It’s information that [parents] can’t get from any other source” (P8). “Whether they’ve attended for years or joined recently. There is something new to learn and listen about, which in turn “[builds] up [parents] capacity” (P1).

Participants also believed that group peer support was preferred over one -on-one mentorship approaches as this created greater opportunities to establish relationships, especially when some parents were reluctant to join and “didn’t seem to want to do it” (P7) or “didn’t seem to be receptive” (P7). Organized peer support was suggested to be more valuable than parents facilitating relationships on their own and having to work on maintaining these relationships. It was suggested that with the demands of parenting a child with unmet support needs, other connections “just fall and then [parent’s] don’t have a backup” (P8). With the peer-support group and a regular and consistent facilitator dedicated to this role, the connections were more reliable and seen as dependable by participants.

However, one participant noted that it can be very difficult to convince isolated parents to begin attending the group, “it’s a really hard sell to get people” (P8) to attend a peer-support group the first time, “they’re usually okay once you get them here, but it’s getting them here that sometimes is difficult” (P8). Noted by another, “it’s hard for [parents] to see the value until they’ve actually experienced [peer support]” (P8). Once a parent could attend and make that connection, it was noted that families realized the value. “Having other families to communicate with and connect with… is essential” (P5).

Discussion and Implications

The barriers to meaningful peer support were a lack of funding, transportation, space, and childcare services. This finding is supported in the literature (Day et al., 2012) but remains a particularly concerning finding since literature also suggests peer support programs are as a main line of support in times of fiscal restraint and tend to be viewed as a less expensive alternative to other interventions or services (Cyr, McKee, O’Hagen, & Priest, 2016). The childcare aspect, the most significant barrier, is an ongoing challenge in Canada with a lack of a national child care strategy identified as a serious financial barrier for most families with children whether or not they have a disability. Overall, the barriers reflect the disabling societal structures identified in critical disability literature including austerity, inaccessibility, and a lack of collective social responsibility (Bach, Gallant, & Institute for Research on Inclusion and Society, 2013; Brett, 2002; Goodley & Runswick‐Cole, 2010; Oliver, 1996). These barriers and the experiences of families are complex (Dodd, Saggers, & Wildy, 2009) but may be targeted through collective action and advocacy with some suggestions from the literature proposing that as peers, parent advocates may have a unique ability to target both disabling structures and policy in a connected, relational manner (Bell, Fitzgerald, & Legge, 2013).

Themes related to meaningful experiences in peer support have been identified as skilled, knowledgeable, and experienced facilitation, the establishment of safe environments and the building of meaningful connections. The need for skilled facilitation by someone who is also a parent is established in the literature (Dennis, 2003). This is an unsurprising finding given the lack of trust in professional services by many families (Mendoza, Katz, Robertson, & Rothenberg, 2004) and the difficulties navigating professional relationship where there is typically an imbalance of power and exclusionary structures (Case, 2000).

Participants indicated that facilitators needed to be skilled in formal facilitation skills in order to run the group effectively. The facilitators also needed to establish a judgement free environment of mutual respect. Particular skills such as listening and advocacy were also important and these also appear in the literature, especially in the importance of mutual trust as a basis for relationships and social action in peer support (Sunderland & Mishkin, 2013). The facilitators needed to be knowledgeable in supports, services, and community, again not a surprising funding given the difficulties families face in navigating a complex service environment (Davies & Hall, 2005). Facilitators also needed to practice self-care and establish boundaries, perhaps a difficult proposition in a peer support program that is relational in nature.

The participants in this study valued the idea of formally employing the peer support facilitator in order to recognize the skills and expertise required to successfully carry out the role. This is a complex issue. Some experts point out that paying a peer supporter may erode the relational nature of the role and create a power imbalance that must be acknowledged and carefully monitored (Walsh, McMillan, Stewart, & Wheeler, 2018). Research on peer support and facilitation indicates that there is a danger of the role being underpaid and unsatisfactory due to a lack of role clarity and shared expectations (Gillard, Gibson, Holley, & Lucock, 2015). Despite these challenges, paying peer supporters reflects a valuing of the role and is an increasingly common model in the effective and efficient running of a peer support program (Moran, Russinova, Gidugu, & Gagne, 2013).

The establishment of a safe environment was also a key finding with the confidential judgment free environment necessary for successful peer support, again reflecting the importance of trusting relationships and the negative impacts of unbalanced professional relationships.

The building of connections was a key element in successful peer support programs. Our findings support previous literature with the benefits of peer support including reduced loneliness, the fostering of community and connection and the prevention of social isolation (Bray et al., 2017). McArthur & Faragher (2014) have suggested that families who are isolated must be assisted to be able to access the social supports that could make a positive difference for themselves and their children through structured programs such as peer support interventions. This finding is in accordance with the peer support model based upon solidarity as care, with the potential for collective action and community being a key element in the success of the model (Klein et al., 2019). The connections made seemed to form the basis for reciprocal relationships in which all members were able to receive and provide support, perhaps avoiding the “caring for” model of peer support. Our findings reflected the sociopolitical aspects of peer support such as collective identity and social action in supporting other parents or primary care-givers (Naslund, Aschbrenner, Marsch, & Bartels, 2016; Solomon, Pistrang, & Barker, 2001). The difficulties some families may find in reaching out to others also appears in the literature (Edwards, Parmenter, O’Brien, & Brown, 2018) and may be important to understand for those seeking to connect families to peer support programs.

Our research was grounded in the experiences of parents and was meant to develop guidelines for meaningful peer support group programs that could reduce existing barriers and facilitate opportunities to build promising practices for peer support programming that could then be validated and adapted with future evaluative research. The guidelines suggest that peer support programs must balance practical issues of logistics and infrastructure but must also be informed by approaches that are truly family-centered and reduce or eliminate power differences and ensure co-created and shared decision making. As suggested in family-centred literature, these guidelines recognize that parents are the foremost experts in the needs and wants of their children (Dodd, Saggers, & Wildy, 2009).

Suggested Guidelines for Peer Support Programs

The following guidelines are based upon our findings and suggested as possible application of the results.

1. Access to sustainable yet flexible funding

Peer support has been argued to be a more cost-effective approach than other types of support programming however, funds are still required to ensure consistent delivery including access to a safe, private, and adaptable space and on-site childcare with financial support to offset this cost.

2. Provision of an accessible location and childcare

The location of the peer support group would have to meet the appropriate standards of accessibility and include easy access to public transportation. Additional resources should be added to ensure there are trained staff onsite to support the flexible approach to childcare needed for children with varying needs.

3. A regular and consistent program time

By scheduling peer support groups at regular but varying times (morning and evening), parents or primary care-givers can choose a time that fits their schedule and creates certainty that the meeting details will not change. This may also aid in the organization of childcare and transportation.

4. Formal training for facilitators

In addition to being a parent to a person with a disability, facilitators of meaningful peer support must have strong communication and organizational skills. Training in advocacy and crisis management skills; ethical service delivery including maintaining confidentiality and privacy; providing an empathic and non-judgmental environment and including strategies for facilitator self-care and boundary setting is also essential. Building facilitator capacity with a working knowledge of community resources to help families navigate available supports should include knowledge about eligibility criteria and some knowledge of application processes to support referrals when needed (e.g. spiritual/cultural supports, counseling).

5. A formal role for facilitators within a service organization

Ensure the facilitators have a ‘formal role’ or position within the organization that offers the peer support program. This would facilitate access for parents to other supports offered within that organization as well as supports for the facilitator themselves (e.g. access to a supervisor for brainstorming and debriefing, access to staff meetings to build awareness of changes, the vision and mission of the organization, access to training opportunities available to other staff). Having two peer facilitators may help ensure sessions were consistently offered.

6. Access to one-on-one follow up

Provide one-on-one supports as a way to follow-up if parents disengage or are reluctant to speak in a group. Facilitators following up with parents enables opportunities for ‘check-ins’ and more personalized discussion about what that parent might need. This also creates opportunities to share information on upcoming events and peer support group discussion topics that may have been missed.

7. Grounding peer support in principles for a family-centered approach, collective social identity, and peer advocacy

The peer support program should maintain a balance of power and provide a safe space for co-created and shared decision making, recognizing that parents are experts. The purpose of the program, in addition to building connections and reciprocal opportunities for support should be to build leadership capacity with parents to enable them to become advocates and champions for their children in their interactions with professionals. Peer support should acknowledge the social complexity within which families live and should enable parents to negotiate the web of ‘expert’ services they interact with (Cowden & Singh, 2007).

8. Built in self-reflection and evaluation for continuous learning and improvement

This finding reflects the complex nature of the facilitator role and perhaps compensation for this role may need to be accompanied by self-reflection and monitoring of power imbalances.

Limitations and future research directions

This research was limited by a small number of participants with homogenous experiences at one community agency. There may be considerable advantage in including more parents from a variety of settings to deepen our understanding of the characteristics a successful peer support group. Future research could benefit from including other peer support models. Although we did not observe a significant difference in opinions between participants who were facilitators and those who were not, future studies might focus on this as a possible point of distinction in other settings.

The suggested guidelines need to be further validated and tested in a variety of settings in order to ensure their utility and validity. In addition, the lack of quantitative evidence in the field of peer support has been raised as a concern in the literature (Shilling, Bailey, Logan, & Morris, 2015) and could be addressed in future designs. Interesting questions might also arise as to the connection between peer support and collective identity and in the harnessing of such identity for mutual support and social change. Further studies into ways in which peer support may be funded in a sustainable manner may also be helpful since we are concerned that peer support may be relied upon in times of austerity as an inexpensive option without the investment in resources necessary for the success of the model. There is a need in future research to attempt to include families who may experience multiple forms of exclusion such as Indigenous families, new Canadians and refugee families, and LGBTQ+ families. Finally, future research may also benefit from including the voices of the family members with disability.

Conclusion

This study examined a peer support program from parent perspectives using a critical disability lens. Barriers to successful peer support programs were related to the disabling elements of insufficient funding, inadequate transportation and space and a lack of childcare. Key elements in successful peer support programs included a safe environment, skilled, experienced facilitation and building of meaningful connections among parents. Guidelines aimed at limiting these barriers and enhancing success were suggested. The importance of peer support for connection to others and access to information, advocacy and relationships was emphasized. Parent voices, most often mothers, are often marginalized in both medical model frameworks and critical disability approaches; it is our hope that peer support models may enable parents to feel empowered, respected, and connected in a meaningful and sustainable manner.

Acknowledgements

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Author Biographical Notes

Dr. Meaghan Edwards is an instructor in Community Rehabilitation and Disability Studies in the Community Health Sciences Department at the University of Calgary. She has a background in community-based evaluation and research in both Canada and Australia and was a recipient of the University of Sydney’s World Scholar Award for her Doctoral studies. She is currently working on community and academic research partnerships for social change in a project supported by the O’Brien Institute for Public Health. She has particular interest in family studies, policy, human rights enquiry, and the systems and processes of community and social support for marginalized people.

Kora Brown is a graduate of the Bachelor of Community Rehabilitation and Disability Studies program at the University of Calgary, another accomplishment among her previous post-secondary accreditations. Now her focus is pursuing additional education to be able to help more individuals and families.

Dr. Katrina Milaney is an Assistant Professor in Community Rehabilitation and Disability Studies. She has an interdisciplinary academic background that includes sociological and gender-disability theory frames and has several years in community-engaged research. Katrina is a Distinguished Policy Fellow and is the recipient of a Peak Scholar award, Societal Impact Award, Distinguished Achievement for Social Accountability award and was recently nominated for a Canadian Institutes for Health Research Trailblazer award.

 

International Journal of Disability, Community & Rehabilitation
Volume 18, No. 1
www.ijdcr.ca
ISSN 1703-3381