Online Peer-Led Support Program for Affected Family Members of People Living with Addiction: a Mixed Methods Study

Of the 78 participants who expressed interest in the online peer-led support group, 54 completed the baseline survey and 31 attended one or more of the support group sessions. Of the 31 attendees, 23 completed the exit survey, were considered completed participants, and were included in the analyses (i.e. completed participants attended at least one support group session and had at least one pair of baseline and exit outcomes recorded). Completed participants attended a median of three sessions (IQR = 4.25, total range 1–18). Characteristics of completed participants are shown in Table 1. The characteristics of completed participants were compared to the characteristics of participants who did not complete the exit assessment (n = 31), with no significant differences found in age, relationship to the relative, length of time supporting their relative, General Self-Efficacy Scale (GSES), Personal Well-being Index (PWBI), or Social Connectedness Scale (SCS) (all p > 0.05, further details are in Table 4 in the Appendix).

Table 1 Characteristics of completed participants

Sixteen participants of the 23 who completed the exit survey expressed interest in participating in an interview. One declined and four were unable to complete the interview during the data collection period. The remaining 11 participants were interviewed. Interviews were a mean duration of 26.2 min (ranged 17.5–39.2 min). The average age of participants completing an interview was 57.3 years (range 40.0–66.0) and all were female. Six participants lived in metropolitan areas and five in non-metropolitan areas. The most common primary drug of concern for the affected family member’s relative was methamphetamine/ice (n = 5; 45.45%), followed by alcohol (n = 3; 27.27%), and poly-substance use (n = 3; 27.27%). Participants (n = 10 affected family members of an adult or adolescent child; n = 1 affected family member of a partner or ex-partner) had supported their relatives for a mean of 8.8 years (range 1.0–18.0 years).

General Self-Efficacy, Well-being, and Social Connectedness

Findings from the linear mixed models are shown in Table 2. For the primary outcome, there was a significant improvement in mean general self-efficacy from baseline to exit (b = 2.63, 95% CI 0.82, 4.44, p = 0.004). No significant changes were observed for well-being or social connectedness over time (p > 0.05).

Table 2 Findings from linear mixed models for general self-efficacy, personal well-being, and social connectedness regressed onto timeProgram Satisfaction and Perceived Benefits

The majority of participants who completed the exit survey reported their satisfaction and experience of the online peer-led support group as “satisfactory” or “very satisfactory” (overall client satisfaction n = 22, 95.65%; group sessions n = 21, 91.30%). Results for the perceived benefits of the program are shown in Fig. 1. The majority (95.65%) of participants agreed they had experienced one or more benefits from attending sessions. At program exit, 91.30% (n = 21) of participants attending the program reported improved feelings of connection to others in similar situations; 86.96% (n = 20) reported improved ability to apply strategies; 82.61% (n = 19) reported improved knowledge of coping strategies; 82.61% (n = 19) reported improved ability to work through emotions; 73.91% (n = 17) reported improved substance use knowledge; 69.57% (n = 16) reported improved ability to maintain participation in enjoyable activities; and 65.23% (n = 15) reported improved frequency of enjoyable activities (n = 15, 65.23%).

Fig. 1figure 1

Perceived Personal Benefits Scale results. Note. “Agree” includes responses “total agreement”, “agreement”, and “somewhat agreement”. “Disagree/Neither agree nor disagree” includes responses “total disagreement”, “disagreement”, “somewhat disagreement”, and “neither agreement nor disagreement”. Participants responded to the statement, “As a result of the online support group, I …”

Qualitative Themes

The themes developed in our analysis, alongside a summary of their characteristics, are described in Table 3.

Table 3 Interview themes and topic summariesTheme 1: Connecting with others Who Share the Same World

The first major theme related to participants’ emphasis on connecting with others who share their experience and “world”, through the support group. Participants described feeling alone in their experience as an affected family member, and found it difficult to gain emotional support from non-affected others. Misinformation, perceived stigma, and their low knowledge of addiction all contributed to participants’ isolation and their sense that non-affected others could not understand their experiences.

You wouldn’t really understand it unless you’d been through it [...] People are supportive, but if they haven’t lived through it, it’s different. (Joy, 66 years, mother of son, attended 3 support group sessions)

It’s very hard for anyone to know what it’s actually like when you’re actually there, when I was actually there with [my relative] seeing him using and just all the changes. (Erica, 56 years, mother of son, attended 6 support group sessions)

As Joy and Erica described, participants felt that true and fundamental understanding of their experience could only be gained through lived experience. A core benefit of the support group was recognizing that others shared their experiences and could understand and identify with them. As Dawn (55 years, mother of son, attended 8 sessions) reflected, “you weren’t by yourself [in the support group] … there’s a lot of people, a lot of families, experiencing the same that we we’re experiencing”.

Subtheme: Learning and Contextualizing

Under the theme of “Connecting with others” we identified a subtheme, “Learning and contextualizing”. Through connecting with others, participants described being able to learn new strategies and skills to cope, as well as contextualizing and normalizing their experiences within a broader realm of addiction lived experiences. As Erica (56 years, mother of son, attended 6 sessions) described, “I found it just helps you get your eyes off yourself, […] people just gave good advice, just heard different ways that different people handled things and that was helpful”. Contextualizing their experiences helped participants to feel normal and see their circumstances positively, with many stating that the group “made me realize how lucky I was” (Joy, 66 years, mother of son, attended 3 sessions) and helped them recognize that “my problem wasn’t as bad as others” (Mary, 64 years, mother of daughter, attended 2 sessions).

Theme 2: It Is the Facilitators that Make the Group

The second major theme related to the role of the facilitators in creating a safe, rewarding, and supportive group environment. Participants emphasized that the sensitivity, professionalism, knowledge, and skills of the facilitators were central to the effectiveness of the group. As Walker (54 years, mother of son, attended 15 sessions) described, “[the facilitators] obviously just had a great deal of experience in facilitating and on the subject. They knew a lot more about the topic of addiction”. Effective group management, as outlined by participants, included ensuring equal opportunities for sharing and managing talkative, distressed, or domineering attendees. As Emilia (66 years, mother of daughter, 18 sessions) described, any group will have “people who want to dominate” and “shy people”. Participants noted that “mak[ing] sure everyone got an opportunity to talk” (Erica, 56 years, mother of son, 6 sessions) and “discuss their issues” (Dawn, 55 years, mother of son, 8 sessions) was paramount, and required facilitators to be “really on track with, maybe checking people, but being nice, saying, ‘thank you, and let’s hear from someone else’” (Emilia).

Skilled facilitators were needed to effectively manage the tone of the group and prevent potential distress, with two participants describing previous negative experiences of other support groups. Emilia (66 years, mother of daughter, 18 sessions) stated that she had felt “guilty” and like a “bad mother” for setting boundaries based on the feedback of a support group she had attended several years prior, while Bernadette (50 years, mother of son, 11 sessions) found a past support group to be “distressing”, hearing negative experiences and “think[ing] that that was my future”. In relation to the online peer-led support group, participants emphasized the facilitators’ respectful approach, in which participants could share with and support each other, without judgement of their different circumstances or approaches. Joy (66 years, mother of son, 3 sessions) reported that “it was very sharing. I think that was what was good about it”. Emilia and Marjorie noted the strengths of the facilitators:

[The facilitators] used that thing that, we’re not to tell people what to do, you’ve got to be accepting of others’ situations. We can share information but we shouldn’t force information. (Emilia, 66 years, mother of daughter, 18 sessions)

The facilitators were great and they always worked hard at including everyone and giving everyone the opportunity to speak, […] So yes, it’s the facilitators that worked hard at making it work. (Marjorie, 60-70 years, mother of son, 10 sessions)

Theme 3: Accessing Support When in Crisis

This theme summarized participants’ descriptions of being able to access support provided by the group when they need it. This theme is divided into two subthemes: (i) Needing help in crisis and (ii) Ensuring support is accessible.

Subtheme 1: Needing Help in Crisis

Participants described a pattern of seeking support during periods of heightened stress or crisis, and then stepping away from support when the crisis eased. For example, Mary (64 years, mother of daughter, 2 sessions) stated that, “normally, I just go along, and try not to kind of think about it too much, but then something will happen […] that will start me off again, and then I will seek help”. Dawn (55 years, mother of son, 8 sessions) similarly explained she had stepped away from the support group when her circumstances improved; “My son now is in long-term rehab, and so I don’t need the support at the moment […] But certainly, if things escalated again, I would be looking [for support]”.

Subtheme 2: Ensuring Support Is Accessible

Participants described barriers to accessing care and the ways the online setting made the group more accessible. Balancing everyday demands while caring for their relative often left limited time for seeking support for themselves. As Walker (54 years, mother of son, 15 sessions) stated, “you’ve got enough to do when you’ve got full-time work and a drug addicted other, it’s hard to get to things”. Participants emphasized that attending the peer-led support group online made it more accessible, especially during crisis periods when they most needed help. Attending online meant “you don’t then have to try and get there at a certain time” (Dawn, 55 years, mother of son, 8 sessions) and “you don’t have to take time off work to get to the meetings” (Walker). The online format provided choice and flexibility:

You can just use your laptop, you can just use your phone, you can just kind of go move places, turn your camera [off or on]. (Erica, 56 years, mother of son, 6 sessions)

As Orana (40 years, wife of male partner, 1 session) noted, new or returning members “could feel a little bit self-conscious”, in the unfamiliar group environment, and “trying to find how it all runs and everything”. New group members, who may have joined due to worsening circumstances, may experience heightened emotional responses during meetings. Being able to attend with their camera off made participation less challenging for these members: “when you’re doing something new, like – total strangers, it’s difficult […] I found the Zoom was really good, because you could just sit and listen, if you feel a bit teary” (Joy, 66 years, mother of son, 3 sessions). As Dawn (55 years, mother of son, 8 sessions) explained, “you’re in the comfort of your home, […] you have privacy, you don’t have to be up on the screen, but you can still listen”.

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