Keywords: focus group; peer support; mental health; psychiatric survivors; research
DesignThe current study constitutes a secondary supplementary analysis of focus group data. A supplementary analysis has been described as a type of secondary analysis in which researchers conduct “a more in-depth investigation of an emergent issue or aspect of the data, which was not considered or full addressed in the primary study” (Heaton, 2004, p. 38). While the primary purpose of the focus groups was to explore the relationship between poverty and mental health from psychiatric survivors’ perspectives, peer support dynamics emerged throughout the focus groups. Following the primary analysis, the authors returned to the data to conduct a supplementary analysis on peer support dynamics.
A total of 250 psychiatric survivors participated in the quantitative interviews. Participants were recruited through advertisements in local newspapers, posters in grocery stores, libraries, community and health care organizations, and with the assistance of health and social service providers. A research coordinator screened potential participants for eligibility. Inclusion criteria required individuals to be at least 18 years of age, have a self-reported psychiatric diagnosis for a minimum of one year, speak and comprehend English, and provide written informed consent. After providing informed consent, participants completed one-on-one quantitative interviews with a research assistant. Following the interview, participants were asked if they were interested in participating in a subsequent focus group and, if they agreed, provided their contact information.
During the quantitative interview participants indicated whether they believed their financial status had improved, stayed the same, or worsened in the previous year and focus group sessions were divided based on these results. The ‘improving’ category had fewer participants in it and therefore all interested participants in that category were invited to attend the appropriate focus group. Because the ‘staying the same’ and ‘worsening’ categories were larger than the capacity of the focus groups, a subset of interested participants in those categories were randomly selected and invited to attend the appropriate sessions. A total of 34 invited participants were available during the set focus group times and participated in the focus groups. One focus group session was held with participants who perceived their financial status as improving, two focus groups with participants who perceived their financial status as staying the same, and two focus groups with participants who perceived their financial status as worsening. Participants received a $20 honorarium for their participation in the focus group.
The combined transcripts were analyzed using conventional content analysis. In general, content analysis is defined as “a research method for the subjective interpretation of the content of text data through the systematic classification process of coding and identifying themes and patterns” (Hsieh & Shannon, 2005, p. 1278). More specifically, a conventional content analysis is used when researchers immerse themselves in, and allow insights to emerge from, the data while avoiding preconceived categories (Hsieh & Shannon, 2005; Kondracki & Wellman, 2002).
Peer support dynamics were observed when conducting the primary analysis of focus group data. Following the primary analysis, the authors returned to the transcripts and highlighted instances of participant interactions with one another. The interactions were extracted from the transcripts and the authors made notes of their initial impressions of the data. Impressions were discussed in group (teleconference) meetings with all authors. Following discussions of initial impressions, the interactions were grouped together based on similarities in content and tone. The authors attempted to directly reflect participant words and sentiments when labeling the groupings and regularly discussed their labels to ensure that there was agreement in interpretation.
A total of 34 individuals, 17 males and 17 females, participated in the focus groups. Note takers estimated participant ages with ages ranging from mid-20s to mid-60s. The majority of participants were in the 30s or 40s age range. The peer support dynamics that emerged within the focus groups were similar regardless of financial status category (improving, staying the same, worsening) so all of the focus groups were analyzed together in the current study. When quotations presented in the findings involve interactions between multiple participants, participants are identified using “Participant 1,” “Participant 2,” etcetera to provide clarity to the reader. To preserve the anonymity of participants, “Participant 1” within one interaction is not necessarily the same individual as “Participant 1” in another interaction. Participants are re-numbered within each interaction so as not to identify any specific individual throughout the findings.Information about Resources
During the focus group discussions a facilitator asked participants about the resources that have helped them financially. Instead of directing their responses to the facilitator, participants spoke to one another about the resources they accessed. By describing resources to one another, participants demonstrated expertise in their personal knowledge and eagerness to share their knowledge of resources with other participants. Information was shared about community services, health care services, financial assistance, employment support, education, and food.
Participants accessed a number of community services to obtain peer support, tangible resources, and information. Throughout the focus group discussions information regarding community services were shared. For example, two participants discussed a drop-in centre for women,
Participant 1: “It’s [a program] just for women … like any ages. You know a lot of young women go there too and their kids too.”
Participant 2: “Don’t you have to be homeless?”
Participant 1: “No … you don’t have to be. And there’s workers there that will talk to you.”
When another participant described a different women’s program, others joined the conversation and elaborated on the resource, demonstrating their awareness of the same service,
Participant 1: “[Agency] is a transition home for women that are post-psychiatric or homeless and they offer free lunches.”
Participant 2: “You can do your laundry there, you can access the computers there.”
Participant 3: “You can have a shower there.”
Participants provided information to one another on resources that they found beneficial and suggestions for others to consider.
Health care services.
As all of the focus group participants had a psychiatric disorder, health care services were commonly accessed. Participants described some of the difficulties they faced when managing their mental illnesses and others informed them of useful health care services and resources. Examples include,
Participant 1: “[It’s] one of the best books I ever got.”
Participant 2: “Oh cool, what’s this?”
Participant 1: “It was [name]. If you have any form of depression, I’m telling you man get that book and do it.”
Participant 1: “There’s a place actually here at [hospital] called the [psychiatric care] team.”
Participant 2: “Oh yeah?”
Participant 1: “and … you can refer yourself, or you can go through the ER or you can get your family doctor … and it’s free … I have the phone number if you want it.”
Participant 2: “Okay.”
Participants were well informed of health care services and resources and were able to provide one another with specific details, including workbook titles and program phone numbers.
Many participants in the current study were unemployed and accessing or hoping to access finances from Ontario Works (OW, general welfare) or Ontario Disability Support Program (ODSP, provincial disability). When participants discussed the difficulties they faced or frustrations they had with the programs, others provided suggestions and information about their rights as clients. As stated by one participant,
“There’s things that welfare don’t even tell you that you’re eligible to have … like they’ll buy you a cell phone, they’ll pay for your cell phone, there’s a travel allowance.”
Other participants conversed about the expectation to report all sources of received income,
Participant 1: “They won’t deduct birthday gifts but they want you to claim it.”
Participant 2: “You have to claim it.”
Participant 3: “Legally they can’t deduct it but some of them will try.”
While a number of participants were unemployed and accessing financial assistance, many expressed interest in employment. Participants expressed a number of issues when trying to access jobs, including potential OW or ODSP deductions, lack of professional clothing, and gaps in resumes, among others. Despite these issues, participants shared information about employment services and supports they could access in their community. For example,
“There’s another facility I know of … will help people get back into the workplace with a full seminar on preparing yourself for a job, what you should do, the things you should know, the things you should prepare.”
Furthering education in the hopes of obtaining future employment was another topic of discussion for participants. As they explained the barriers they faced in terms of education, others provided information on educational supports,
“I went on Ontario Works and they let me go (to school) for the whole day … and they support me … if I wasn’t on there I would have to do it on my own and it would cost you. If you’re on the system they don’t charge you for that.”
After describing this program, other participants inquired about the organization that ran it. Participants were well informed of various education services and enthusiastic about helping others discover them as well.Food.
Access to healthy and affordable food was a central issue of discussion among participants. Participants shared information regarding where to access free food while upholding food bank policies, “Every month I write down what food bank I can go to.” Further, the following example illustrates a participant’s suggestion to secure adequate food on a limited budget,
Participant 1: “A lot of people I know will try to buy their food all at once for the month and that’s really hard to do sometimes.”
Participant 2: “That’s why you need a gift card.”
Participant 1: “Yes I thought of doing that.”
Some expressed that purchasing healthy foods on a limited budget was possible if they “buy whatever fruits and vegetables are in season … they tend to be cheapest … like cabbage … cabbage has a lot of nutrition, it’s very cheap.”
Food preparation was also discussed. For example, a participant shared how to make yogurt,
Participant 1: “You can make your own yogurt … you take a quarter of a cup of yogurt and add water and dried milk powder which you can get from the food bank … you put it in a casserole dish. You put it in the oven and you turn the oven off and the heat from the oven makes the yogurt grow.”
Participant 2: “Really?”
Participant 1: “Yeah and it tastes just like it.”
Importance of Information
In addition to directly providing information on resources, participants evaluated the information they gave and received, and acknowledged that they had difficulties accessing the same information when speaking to service providers.
During the focus group discussions there were instances when participants described resources and concluded by evaluating the resource for the benefit of others. Some examples include,
Participant 1: “It’s run by consumers of the mental health services system.”
Participant 2: “It’s not right for everybody. You have to find your own place in the outside world. But it’s a good place.”,
“They have free art supplies to a limited extent … to get out some of those demons inside and to help for things you can’t quite describe with words … it’s really good at getting some of those difficult things out.”
“Something that helped me when I first got started with this merry-go-round … every few years I go back to the same counseling agency … I’ll go there and talk with the same counselor and I usually learn something new and I feel better than I did before.”
Participants not only provided information about resources to one another but also gave insight into the quality of the services by stating whether they were good or bad, helpful or unhelpful.
In addition to evaluating a number of resources, a few participants specifically stated which resources they valued above others and which resources they would recommend to others. One participant explained the importance of overcoming addiction,
“When I got clean, I realized that that’s a resource, getting clean. Opens up a whole world for me … I’m a member of society today. I’m capable of making better decisions … if I had one thing to tell everybody that would be it.”
Another participant gained insight through a specific personality course he took in the community,
“It’s a two week course … finds out where you’re going and possible directions you might want to go. And it’s like whoa! Opening up the curtains wide where it was all dark for me … I recommend it for everyone here in the room.”
It is clear that participants had opinions about which resources they valued and provided important information to one another by stating which resources were helpful and which they valued most.Lack of information about services from providers.
At times, participants expressed their surprise that others were unaware of various pieces of information prior to entering the focus group session. While describing a peer support agency, one participant stated: “Everybody doesn’t know about [agency]. It’s weird. I don’t understand.” There were numerous instances of participants stating that they did not know or had never heard of resources. More specifically, participants expressed frustration that no one had previously told them about resources, despite being engaged as clients in the health care and/or social services sectors. One example involved two participants discussing a peer support agency,
Participant 1: “I’ve run across peer support in a lot of different ways, I mean I work at [agency].”
Participant 2: “What is [agency]?”
Participant 1: “It’s about what you’re talking about.”
Participant 2: “How come ain’t no one said this to me before? Cause I’m really frigged up and need someone.”
A number of participants specifically stated that service providers do not provide necessary information and subsequently the primary way they receive information is by speaking to other clients. Examples include,
“Well if you don’t know it’s there how you gonna get it, if they don’t tell you it’s there? Most of the information that I’ve found is from other people that are on the system.”
Participant 1: “It’s not publicized … all the different people here, how many people knew about all of the different things that were available to different individuals? It’s not publicized right.”
Participant 2: “You find out about programs that people have gone through.”
Support while Exchanging Information
Information exchange and evaluation were two primary ways in which participants demonstrated peer support. A third way in which peer support emerged was through the provision of empathy, affirmation and the building of friendships.Affirmation during information exchange.
Participants were observed as showing empathy and affirming one another during the focus groups. During one exchange, a participant explained her financial and relationship struggles while two other participants took turns patting her back, holding her hand and handing her tissues when she cried. In another situation a male participant discussed losing custody of his son with two others expressing compassion for him,
Participant 1: “As soon as I signed over my parental rights I became person non grata, they don’t tell me what they’re doing with him, where he is, nothing like that.”
Participant 2: “I’m sorry to hear that.”
Participant 1: “Oh thank you.”
Participant 3: “I’m sorry you had to go through that.”
Participants also encouraged one another throughout the discussions. Examples include,
Participant 1: “I’m isolating myself … I’m making money but I’m not out there.”
Participant 2: “At least you’re trying to do it.”
Participant 1: “Yeah.”
Participant 2: “That’s the first step.”
Participant 1: “For us that are on low income I wouldn’t want to live in their shoes because it takes a survivor, and a strength and strong person to be where we are and to go where we’re going.”
Participant 2: “Exactly, I agree with you.”
Participants 3 and 4: (nods)
Participant 1: “Not anybody could walk in our shoes but strong people do.”
Empathy and affirmation were observed in a number of ways, including touch (e.g. patting back, hug), the provision of information, and verbal encouragement or expressions of understanding. Participants also affirmed the facilitator in the usefulness and benefits they received from the focus groups,
Participant 1: “Right now we’re kind of relating to each other like what we have in common is we’re having a hard time so we feel a little bit of a connection over that or we’ve had similar experience there.”
Participant 2: “It’s a good thing to bring people together.”
Building future connections.
As a final indicator of peer support, some participants made an effort to develop relationships to carry through after the focus groups ended. One particularly pertinent example occurred between three women,
Participant 1: “Would you guys be interested in coming together in a group and then maybe doing like an outing?”
Participant 2: “Yeah.”
Participant 1: “‘Cause you guys seem like really interesting people.”
Participant 3: “… Could you give me your number? That would be awesome.”
Other participants expressed more general support by stating that they would be available to others if they were going through difficult situations,
Participant 1: “What about all the lost souls that don’t know where to go because they’ve had so many doors shut in their face?”
Participant 2: “Well honey, you can always come to my house.”
Participant 1: “Your door’s always open?”
Participant 2: “Sure.”
These exchanges indicate that participants valued the connections they built during the focus groups and saw the other participants as potential friends and peers to exchange assistance and companionship with in the future.Discussion
The findings from the current study demonstrated that informal peer support occurred spontaneously within a research setting. Participants attended a focus group session for the purpose of discussing poverty and mental health but also engaged in peer support through the practical exchange of information and through expressions of support and understanding. Not only did participants share valuable information with the research team, they demonstrated the importance of sharing their experiential knowledge with one another. As a number of participants stated, they tend to discover new information based on the knowledge of others who are in similar situations.Implications
The information and support exchanged between participants indicates that psychiatric survivors benefited from their participation in the focus groups. As stated by one participant, “It’s a good thing to bring people together.” The potential interpersonal benefits of participating in focus group research are not often acknowledged within Research Ethics Boards (REBs). Within the Canadian Tri-Council Policy Statement (2010) discussing REB guidelines, the description of potential research benefits is described as such:
“Research involving humans may produce benefits that positively affect the welfare of society as a whole through the advancement of knowledge for future generations, for participants themselves or for other individuals. However, much research offers little or no direct benefit to participants. In most research, the primary benefits produced are for society and for the advancement of knowledge” (p. 22).
The findings from this study demonstrated that focus group research also promotes direct benefits for participants such as the provision of informal peer support. While the risks associated with such research must still be considered, it appears that focus group methodology may enhance the benefits of research participation beyond the traditional advancement of knowledge for society.Limitations
As the current study is a secondary analysis, the focus group data was not collected for the purposes of investigating peer support dynamics. There are a number of potential limitations inherent to secondary analyses, including exaggerated researcher bias and insufficient secondary data (Thorne, 1998). Further, researchers must ensure the voices of participants are depicted accurately despite the supplementary nature of the analysis (Thorne, 1998). As two of the authors were directly involved in data collection, all authors discussed and validated each other’s interpretations, and attention was paid to including participant quotes and sentiments directly and in context, the authors worked to rectify any potential secondary analysis issues that may have emerged.Conclusion
The current study was a secondary analysis of focus group data exploring the issues of poverty and mental health for psychiatric survivors. Peer support dynamics occurred spontaneously during the focus group sessions through practical information exchange and expressions of support between participants. The findings from this study indicate that it is possible for participants to experience personal benefits when participating in focus group research. While REBs tend to focus primarily on the societal benefits of research participation, these findings demonstrated that participation also personally benefits participants through the provision of informal peer support.