The Meaning of Social Support for Persons with Serious Mental Illness

Abstract

Aim

This study sought to better understand the population-specific types of social support relevant to adults living with serious mental illness (SMI). Our study was exploratory and used a qualitative approach that centered on uncovering the types of social support meaningful and relevant to persons with SMI.

Method

The sample comprised of 52 adults receiving county mental health services in the San Francisco Bay Area. Data was gathered from six focus groups and analyzed using NVivo10 and Consensual Qualitative Research (CQR; Hill et al., 2005; Hill et al., 1997).

Results

Six qualitative domains were identified: a) Supportive Conditions, b) Day-to-Day Living, c) Illness Management, d) Resources and Information, e) Guidance and Advice, and f) Community Participation Support.

Discussion

While the six support domains share some broad-based conceptual underpinnings with traditional models of emotional and instrumental support, the domains emerging from our study represent supports uniquely tied to the stressors associated with living with an SMI, and therefore hold conceptual distinction from traditional types of support.

Conclusions/Implications

Findings from this study offer a conceptual framework for understanding social support for persons living with SMI and lay the groundwork for the development of a SMI-specific measure of social support. In addition, our research permits future researchers to investigate the conditions under which social support buffers the impact of SMI stressors, assisting service providers in more effective identification of individual support needs for clinical intervention.

“Serious mental illness” (SMI) is defined by federal regulations as any diagnosable mental, behavioral, or emotional disorder experienced by persons age 18 and older that is characterized by episodic, recurrent or persistent features and substantially interferes with or limits the ability to participate in one or more major life activities (U. S. Department of Health and Human Services, 1992). Five percent of the U.S. population experiences SMI and it is a leading cause of disability (National Institute of Mental Health, 2014). The SMI population experiences significant stressors such as illness management, isolation, homelessness and stigma – long understood to be barriers to functioning and societal participation – which elevate the risk of morbidity and mortality (Madianos, 2010; Narrow, Regier, Norquist et al., 2000). In fact, the life expectancy of persons with SMI is an alarmingly 25-30 years less than that of the general population (Colton & Manderscheid, 2006). Studies showing that these stressors cannot be alleviated solely through psychopharmacological and/or behavioral interventions have led to recommendations that psychosocial approaches such as social support interventions be added to the SMI treatment toolkit (Corrigan & Phelan, 2004; Madianos, 2010; Narrow et al., 2000; Whitley, Harris, Fallot, & Berley, 2008).

Social support has been demonstrated to buffer the negative impact of stress among the general population (Cohen, 2001; Cohen, Doyle, Turner, Alper & Skoner, 2003; Feldman, Cohen, Hamrick & Lepore, 2004) and has achieved national attention as a key component of the mental health recovery paradigm for persons with SMI defined as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” (U. S. Department of Health and Human Services, 2011). Specifically, Community, or the relationships and social networks that provide support, friendship, love, and hope is identified as a major dimension of the recovery model, and three out of the ten major principles guiding the recovery model address social support in some way. For example, recovery is described to include support from peers and allies, through relationships and social networks, and involving individuals, family, community strengths and weaknesses (U. S. Department of Health and Human Services, 2014). In addition, clinical practice guidelines for healthcare settings now include social support assessment as an essential part of psychiatric evaluation (Lehman & Steinwachs, 2010).

To date, little is known about how social support buffers the negative impact of stress among those with SMI. The limited body of research that exists suggests that social support is positively linked to quality of life (Bengtsson-Tops & Hansson, 2001; Sharir, Tanasescu, Turbow & Mamam, 2007), yet, the findings in aggregate reveal small to moderate effect sizes, and some studies show no effect (Anonymous & Anonymous, 2012). We believe these mixed findings are due, in part, to the use of non-population specific measures that do not capture the unique types of support relevant for persons with SMI. These studies are based on measures of social support designed for the general population who experience “typical” life stressors (e.g., divorce, death, loss of job), whereas the SMI population experiences an additional distinctive set of chronic and often debilitating stressors related to stigma, isolation, homelessness and illness management (Madianos, 2010; Narrow et al., 2000). Moreover, researchers who investigate social support with distinct clinical populations point out that general population measures are not sufficient in and of themselves (Broadhead & Kaplan, 1991; Wortman, 1984) and that population-specific support measures are necessary in order to help interpret the existing “morass of positive and negative studies [which are] of little value in the aggregate” (Broadhead & Kaplan, p.67).

Recently-developed measures of social support for individuals with diabetes, cancer, and other specific health conditions have made important contributions in this area (e.g., McCormack, Williams-Piehota, Bann, Burton, Kamerow et al., 2008; Taskila, Lindbohm, Martikainen, Lehto, Hakanen et al., 2006; Yanover & Sacco, 2008). For example, the diabetes-specific support scale Resources and Support for Self-Management (McCormack et al., 2008) measures five domains of functional support unique to persons with diabetes and has been found to be both psychometrically sound and clinically useful. A limited number of studies have explored SMI-specific types of social support. Breier and Strauss (1984) conducted a qualitative study that identified SMI types of supports such as symptom monitoring, role modeling and reality testing. In addition, Walsh and Connelly (1996) observed that emotional support was more common than material and instrumental support among this population. To date, research paralleling the scientific advancement made with other clinical populations has not occurred with the SMI population; indeed, the types of social support relevant to persons with SMI differ from those of the general population and requires systematic investigation. Therefore, this study sought to better understand the population-specific types of social support relevant to adults living with SMI.

Our study was exploratory and used a qualitative approach that centered on uncovering the types of social support meaningful and relevant to persons with SMI. Despite the phenomenological nature of our inquiry, the premise of our study was based on a broad conceptualization of social support defined as the emotional and tangible provisions by others that are perceived to be helpful by the receiver (Cohen & Syme, 1985). Our investigation was also guided by two overarching typologies of social support that have been consistently identified as the most salient and encompassing types of support: emotional support and instrumental support (Declercq, Vanheule, Markey & Willemsen, 2007; Shakespeare-Finch & Obst, 2011). Emotional support involves the provision of caring, empathy, love and trust (House, 1981; Krause, 1986), an affective transaction which imparts liking, admiration, respect and love (Kahn & Antonucci, 1980), or support that leads to the information that one is cared for and loved, is esteemed and valued, and belongs to a network of mutual obligation (Cobb, 1976). Instrumental support is the provision of tangible goods, aid, services, or concrete assistance that is intended to solve a problem or accomplish a task (Barrera, 1986; Cohen & McKay, 1984; Cutrona & Russell, 1990; Krause, 1986; Langford, Bowsher, Maloney, & Lillis, 1997).

Method

Participants

The sample comprised of 52 adults receiving county mental health services in the Bay Area. Table 1 summarizes the descriptive statistics for the sample participating in the study. The average age was 47.5 (SD=10.2). Fifty-four percent identified as male, 29% female, 14% transgender, 2% Genderqueer, and 2% other. Thirty-seven percent identified as White, 33% African American, 16% Asian American/Pacific Islander, and 14% other. Twenty-nine percent reported a primary diagnosis of Major Depression; 25% Bipolar Disorder; 15% Schizophrenia; 11.5% PTDS; 10% Schizoaffective Disorder; 6% Anxiety Disorder; and 4% other. Sixty-six percent reported to be single and never married; 13.5% divorced; 8% living with partner; 5% married; 6% widowed; and 2% separated. Sixty percent lived independently; 12% in a residential/group home setting; 8% lived with family/friends; and 20% other. Sixty-nine percent were not-employed; 19% were employed part-time; and 12% were volunteering. Monthly average income was $836 (SD=$526). Participants reported that on average, they had three people (SD=1.2) to which they could count on for support, reporting an average of three (SD=3.6) friends, two family members/relatives (SD=3.1), and three service providers (SD=3.2).

Table 1.

Means, Standard Deviations, and Frequencies of Study Variables

Sample (N=52)
Variable	%	M		SD
Age		47.5		10.2
Gender
Male	53.8%
Female	28.8%
Transgender	13.6%
Genderqueer	1.9%
Other	1.9%
Race
African American	33.3%
White	37.3%
Asian American/Pacific Islander	15.7%
Other	13.7%
Education
High School Diploma	42%
Did not graduate from HS	18%
GED	18%
Bachelor’s Degree	12%
Graduate Degree	8%
Other	2%
Monthly Income	$836		$526
Primary Diagnosis
Major Depression	28.9%
Bipolar Disorder	25.0%
Schizophrenia	15.4%
Post-Traumatic Stress Disorder	11.5%
Schizoaffective	9.6%
Anxiety Disorder	5.8%
Other	3.8%
Relationship Status
Single/Never married	65.4%
Divorced	13.5%
Living with Partner	7.6%
Currently Married	5.8%
Widowed	5.8%
Separated	1.9%
Living Status
Independent	60.8%
Other	19.6%
Residential/group home	11.8%
Living with Family/friends	7.8%
Employment Status
Not employed	69.2%
Employed Part-time	19.2%
Volunteer	11.6%
Friends that can count on		3.0		3.6
Family members/relatives that can count on		2.2		2.6
Service providers that can count on		2.6		1.1
Overall people that can count on		2.6		1.2

Researchers

The primary research team consisted of two female associate professors (one White and one Taiwanese); one Chinese male associate professor, two graduate students (one African American/White female and one White male). The White female associate professor and the two graduate students conducted the focus group interviews. The female associate professors and the two graduate students completed the data analysis. The male associate professor served as an external auditor. The primary investigators have experience conducting research and working with persons with SMI. The auditor was experienced in conducting qualitative research and using the study’s qualitative approach, Consensual Qualitative Research (CQR; Hill, Thompson & Williams, 1997). The researchers discussed their biases and assumptions prior to conducting the study, and at various points throughout, to promote research reflexivity (Hill et al., 1997; Morrow, 2005). As suggested by Hill and colleagues (1997), the research team openly discussed power issues throughout data collection and analysis. This process helped created a climate in which the student researcher had an equal voice in the data analysis.

Data Sources

Demographic form

Participants completed a brief demographic form immediately prior to the start of each focus group. Information about the participant’s age, gender, race/ethnicity, marital status, diagnosis, employment, education level, substance abuse history, housing, and income status data was collected. In addition, limited social network data was collected including questions related to participants’ number of friends, family members/relatives and formal/paid service providers perceived to be available for social support.

Focus group protocol

The focus group protocol was designed to elicit discussion about participants’ experiences with social support in the recent past. Participants were asked to reflect on things that people have said or done that they believe were supportive, particularly within the context of living with a SMI. In addition, participants were asked to reflect on types of support they would like to receive that they were perhaps not getting. The following two questions were asked by the moderator at each focus group: a) In the recent past (in the last couple weeks), what things have others (friends, family, service providers) done for you or said to you that was helpful or supportive to you in regards to the stressors associated with living with mental illness. We are particularly interested in specifics: things that others have said or done that you experienced to be supportive. Think behaviorally and specifically; b) Now, think about what you would like from others with respect to support. What are you not getting that you would like? Or really want more of? When appropriate, follow-up probes were used for clarification or to request elaboration. The questions were presented orally and in written format. Participants were offered the option to write down additional responses on paper at the end of the focus group if they were unable to provide the information orally.

Procedure

Participants were recruited from community agencies in the San Francisco Bay Area from three county funded mental health programs. Participants were recruited through in-person presentations at community agencies by research team members and through posted and on-line flyers. Individuals interested in participating were asked to contact a research team member via phone or email. All potential participants were screened by a research team member through a phone conversation or an in-person meeting. Inclusion criteria for the study were: a) a primary diagnosis of SMI; b) currently receiving county mental health services; c) ability to speak and understand English; d) willingness to participate in a focus group and be audio-recorded; and e) not be actively experiencing psychosis. Participants were excluded if their primary diagnosis was a substance abuse related disorder. In addition, individuals whose spouse/partner/family member had already been screened into the same focus group were scheduled to join another group at a different time.

Six focus group interviews were conducted, with six to eight participants in each group. The focus groups were held at partnering agencies, settings in which the participants could easily access. The composition of each focus group varied by which agency the participant was connected. Thus, participants were grouped with individuals to whom they were familiar, allowing for the most optimal context for open dialogue and discussion of their experience with social support (Kreuger, 1994). Prior to the start of each focus group, informed consent was obtained from each participant. All participants were informed of the voluntary nature of the research, their rights as a research participant, and the potential negative effects from participating in the study. Participants were reminded that participation in the study had no relationship to, or impact on, their services, and that all information shared in the focus group would be kept confidential by the researchers. One of the potential risks associated with participation was a breach of confidentiality by a group member. Given that the research team could not control information shared outside of the group and in recognition of the potential risk associated with this, participants were strongly encouraged to maintain confidentiality regarding the information shared in the meeting. In addition, the process and format of the focus group was explained. Recommended by Krueger (1998), one research team member served as the focus group facilitator and two graduate student researchers served as observer/note-takers. Focus group interviews lasted approximately 90 minutes and were audio-recorded. The audio-recordings were transcribed verbatim using NVivo10 and each transcript was checked for accuracy by the first author. Pseudonyms were used throughout the interviews and were included in the transcripts so that the researchers could distinguish among participants’ comments during data analysis. Food and beverages were provided during the focus group interviews and participants received $50 for their participation.

The researchers enacted provisions to facilitate Guba’s (1981) four criteria for trustworthiness: credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985; Morrow, 2005; Shenton, 2004). Credibility, or how congruent are the findings with reality (Merriam, 1998) was ensured through in vivo member checks, whereby the moderator consistently checked-in with participants during the focus groups to ensure comments were accurately understood by the moderator. In addition, iterative questioning and probes were used to elicit additional data with the intention to uncover additional explanatory data, contradictions and discrepancies. The moderator enacted measures to ensure participant honesty through the establishment of rapport at the outset of the group. Specifically, participants were encouraged to be open and honest, were reminded that there were no “right answers,” that the research/researchers were independent from participants’ treatment/services, and that participants have the right to leave the group at any time. Participants were also reminded that while they were encouraged to respond, they were not required to disclose information; in particular, it was stressed that while the moderator may use probing questions, participants were free to state their response was complete. Finally, the moderator has experience working with adults with SMI within a group and clinical context and was therefore comfortable establishing group rapport and responding sensitively and appropriately.

Transferability or the demonstration of findings to other situations (Lincoln & Guba, 1985; Shenton, 2005) was attended to by providing sufficient contextual information related to participants, data collection method and timeframes, and the location of the agencies participating in the study (Cole & Gardner, 1979; Marchionini & Teague; Pitts, 1994). The researchers worked to establish dependability, or the reliability of the findings, by documenting each step of the research design and continually evaluating the effectiveness of the process of inquiry used (Shenton, 2004; Morrow, 2005). Finally, confirmability, or the degree to which the findings reflect the experiences and ideas of the participants rather than the researchers, was ensured by an external auditor who reviewed the original transcripts and compared his interpretation to that of the primary research team. In addition, researcher assumptions about participants were explored regularly through debriefing sessions, and reasons for data analysis decisions were explained with acknowledgement of the limitations of this approach. Efforts to address researcher bias, predispositions, and ‘hopes’ for the data were explored regularly through discussion and reflective commentary (Miles & Huberman, 1994; Patton, 1990; Shenton, 2004).

Data Analysis

Consensual Qualitative Research (CQR) was employed in this study (Hill et al., 2005; Hill et al., 1997). CQR involves the use of semistructured data collection and a team of researchers to analyze the data, offer various perspectives, and reach consensus on the meaning of data. Data analysis and coding involves synthesizing domains, core ideas, and cross analysis. CQR requires at least one external auditor to review the data to reduce the risk of ‘groupthink (Hill et al., 2005; Hill et al., 1997). The researchers employed a modified version of CQR for this study related to our data source. Specifically, although CQR was initially designed to analyze individual interview data, we examined focus group discussions centered on the meaning of social support for persons living with SMI. While we recognize the limitations associated with gathering data via focus groups versus individual interviews, focus groups have been identified as an effective approach for generating meaning on areas that have not been empirically investigated (Krueger, 1994). In addition, focus groups have been shown to facilitate spontaneous exchanges between participants which allow group members to build upon each other’s idea (Krueger, 1994). The use and effectiveness of focus groups for this study is consistent with recent investigations using focus groups to better understand issues related to living with a mental illness (e.g., Aschbrenner, Carpenter-Song, Mueser, Kinny, Pratt & Bartels, 2013) and multicultural issues (Cruz-Santiago & Garcia, 2011; Kordesh, Spanierman, & Neville, 2012; Sue, Lin, Torino, Capodilupo & Rivera, 2009).

In the first phase of data analysis, the research team members read one of the transcripts independently and generated a list of preliminary domains. Following the completion of this process for one transcript, each team member repeated the process with the additional five transcripts. The research team conducted multiple meetings to discuss preliminary domains until consensus occurred on eight domains. The researchers then independently linked data from each transcript to the eight domains. At times, data were coded into more than one domain and regular meetings occurred to allow the team to reach consensus on the most appropriate domains for the raw data. To control for researcher bias, groupthink, and identify content that may have been overlooked, our external auditor reviewed the transcripts, the domains, and then provided feedback. Modifications were made to some domains and resulted in consolidating two domains into one, revising domain titles to more accurately reflect the data, and moving data into more appropriate domains. This process resulted in six final domains. Data that did not fit into our six domains were identified as not relevant to the study focus and were therefore omitted. The next phase involved the research team identifying core ideas associated with each domain by matching direct quotes to each domain. This phase of the analysis was completed individually and as a team, evaluating the data until consensus was achieved. The external auditor again reviewed our work and provided feedback, which was used to modify some of the core ideas to better represent the underlying meaning of the data. In the final phase, the team analyzed core ideas for each domain across all focus group transcripts and independently developed categories. Team meetings occurred to share findings and obtain consensus on final wording of categories and placement of core ideas into these categories. The external auditor again reviewed our cross analysis and feedback was incorporated based on team consensus.

Results

The researchers identified six domains which include: a) Supportive Conditions, b) Dayto-Day Living, c) Illness Management, d) Resources and Information, e) Guidance and Advice, and f) Community Participation Support. The content comprising the six domains appeared across all focus groups, and because the domains were interrelated, there was some content overlap. Below is a description of each domain and their associated categories (See Table 1).

Domain 1: Supportive Conditions

Supportive conditions reflect the knowledge, attitude, and behaviors perceived necessary for a supportive exchange to occur. Participants described five categories of supportive conditions: a) mental illness knowledge; b) enduring attitude of acceptance and affection; c) enduring attitude of respect, worth and value; and d) instilling hope, growth and recovery. In regards to mental illness knowledge, participants expressed that an understanding of the meaning and impact of mental illness on the individual was an important supportive condition. Specifically, participants expressed the need for support providers to understand that, at times, mental illness influence’s one’s ability to execute cdaily life activities (e.g., getting out of the house, going to work, school, and being with other people); that living with a mental illness can influence how one thinks, feels and behaves; and that some difficulties experienced by the participants are related to living with a mental illness. For instance, participants’ described:

“I needed to understand partly understanding what I got from it, support, I had never really gotten the realistic, the technical things that a person goes through with a mental illness and how to deal with those things, you know, and it was like I finally got it and I didn’t want to be there, but I have to say I learned something for the last three months I was there that I didn’t want to be there, but in the process I was learning something.”

“I’ve had numerous experiences where the police just talk to you like you’re retarded and, um, they seem to they seem to have a lack of understanding and, um, seems like they need to be trained more when it comes to people with mental health issues and, um, they act like there’s just a cookie cutter of what people with mental health issues deal with and who they are and I’ve been disrespected by the police on numerous occasions.”

In regards to the supportive condition enduring attitude of acceptance and affection, participants expressed that those who are caring, warm and affectionate, and accepting of the individual and of their experience are perceived as supportive. For instance, participants described:

“…I was too embarrassed about and some things I couldn’t even remember that I did so it just helps me a lot to know that I have somebody accept me and, you know just feel cared about and loved.”

“…you know, she’s been there for me and really comforted me and made me, you know, just making me strong.”

“my dad said, um, that, you know, maybe being an administrative assistant could be a career path for me, cause I’ve done that and had several jobs now as an administrative assistant and, but I’ve always felt embarrassed by it and he said, “maybe it could be a good job for you,” and maybe this could be, um, a really good thing. So I felt like, um, validated.”

In regards to enduring attitude of respect, worth and value, participants characterized this supportive condition as having one’s opinions and decisions respected and not being judged, treated differently or “less than” because of the person’s mental illness. For example, participants described:

“…and um, I do have one kind of professional person, um, I have a case manager who really is the only kind of professional person who doesn’t talk down to me. I have depression and anxiety but a lot of the professional people talk to me like I’m a child and she talks to me like an adult with problems but I only see her once a month, unfortunately but she’s very helpful.”

“Well, she listens to me, she respects my opinions about what I have to…she trusted me and observed and you know, not kept tabs but, to make sure I didn’t lose myself, um, and she respected, she respected me, she respect, she I can tell when she has a difference of opinion but her concern, she respects my life choices, she respects, she cares enough to where um…”

In regards to instilling hope, growth and recovery, participants expressed the importance of support providers offering encouragement and inspiration, being positive, instilling hope, identifying progress and ‘meeting them where they are at.’ For example, participants stated:

“…and she’s like you can do anything you want, it doesn’t matter what your diagnosis is, pretty much, you can do anything as long as you put your mind to it.

“…she’ll tell me things like “you know there’s people I’ve known who’s bipolar and they’re doing good now,” or people with jobs or people going to school and that would give me hope that I can do the same, you know, that that I can do just as good. I don’t have to feel down about myself or doubt myself.”

“She makes me not feel bad about only taking one or two classes, you know, she just reminds me to do what you can do. I don’t have to take three classes or four, as long as I’m doing something productive whether it’s working or going to school and I chose to go to school. I’ve worked before but I really don’t like it too much I’d rather do work toward something that I’ll be happy with because I really want to get into social work myself and help others the way I’ve been helped.”

“…one thing I really appreciate about my best friend and two best friends in life are that they both have been with me through all of my experiences and they have always been supportive of what I’m trying to do, rather than like telling me what I should be doing or saying, that your parents tell me that you should be doing this, they help me with what I’m actually working on and they might have ideas about the future but they’ll either keep it to themselves or they’ll share it when it’s appropriate when I’m in a place where I can accept the help.”

Domain 2: Day-to-Day Living

Day-to-day living supports are related to assisting persons with SMI with basic living needs related to food, clothing, money, transportation, and appointments. Participants described three categories in this domain: a) ADL support, b) appointment support, and c) check-in support. In regards to ADL support, participants described support related to a getting their basic needs met related to food, money, clothes, transportation, etc. For example, participants noted:

“…first of all my case manager physically ran, I had nothing I had no shoes no clothes anything she brought me 4 sets of clothes out of her own time, she looked for clothes for me…and helped me with food stamp application…she showed me the way to go to St. Anthony’s to get more clothes at 730 in the morning. She gave me a list of free eats and underlying Glide Memorial Church…”

“…he still take care of my groceries …and then he come over and we can see, he help me how to make breakfast in the morning and just him being around me and checking up on me is real supportive.”

“As far as getting to work, she gives me a ride to work every day, takes me wherever I need to go and we not even together, she got her own but she still does what she does for me, as me being her daughter’s father so and I appreciate that.”

With respect to Appointment Support, participants stated:

“She rode my behind to make sure that I made appointments etc. and ensured by making sure that I got, even though I can make it to places when she reminds me, ensured that somebody comes here to pick me up and take me to medical appointments because I have cardiac problems”

“Making sure that I make regular appointments even, whatever, doctor’s appointments, paperwork appointments, blah, blah, blah. She’ll call me up the day of the appointment to remind me and if its scheduled a couple weeks in advance I’ll end up sitting around my house reading my book listening to music, didn’t, just blow it off like no big deal so she’s a great help in that way…”

With respect to Check-in Support, participant’s described:

“…You call him or you go up to the office and “I just need to check in for ten minutes” and then of course they’ll check in with you, at least my case manager does, like I could check in with her every day of the week if I want…”

“…you know, like, she calls me every day, every day. She never misses a day, and she calls me every day and talks to me and I explain to her what’s going on. What’s going on and, you know…”

“…we’re in communication every day, even though they’re not getting paid every day through this system they’re there, they’re either calling, texting, or something, you know “how are you doing today?” And they do come so many times a week too so.”

Domain 3: Illness Management

The illness management domain reflects support related to managing illness-related issues and included the following two categories: a) medication adherence support and b) symptom management support. With respect to medication adherence support, participants described support to include daily medication reminders, support related to medication re-evaluation, and advocacy support related to psychopharmacological treatment. For example, participants noted:

“I feel like I can never get better but my case manager did help me understand that, “no it’s important for you to stay on meds. Do you want to go back to hospital?” At first I would feel like I’m better now, I don’t need meds, and then later down the line whether it’s a year or three months, cause sometimes I can go a long time without meds and I really feel I’m okay now and I would have another episode and I think it would be because I would get too overwhelmed or another incident would happen where I feel extremely sad or just overwhelmed.”

“My, um, case worker, social worker here, has been helpful, um with my medication, um, and my appointments, um, I seem to have problems with remembering my appointments and, um, she’s been keeping up with that, um, I just found out I have a backlog of two months medications and it’s been here and I didn’t know that and I just found that out so um. Cause they keep changing my medication so, I’ve been just like going through it but she’s been helpful…”

“…he sits down and he kind of gives me the ins and out on whether its medication that I’m getting ready to take or if I’m having a problem in my body or whatever the case may be or from dealing with something in my mind…”

Participants described symptom-management support to include supportive behaviors and strategies intended to reduce the stress associated with illness-related symptoms. This type of support also involves supporting the individual in gaining awareness/skills to manage their symptoms. For example, participants described:

“he says, you’re going to be better, take a deep breath… what’s like the worst thing that can happen, just let the feeling pass and move through you and it will go away so.”

“They gave me feedback about how he saw my point of view and he gave me ideas about other ways to interpret things…”

“I’ve asked for them to both tell me if they see any difference in me to where I’m going downhill. If they see “oh Linda, I think you need to get help. Go talk to your therapist” you know. Cause my last episode, they said they sensed it, but they didn’t know for sure you know, so I told them from now on to tell me so I can get help right away to talk it out or maybe I stopped my meds and I need to go back or maybe I need more meds so.”

“…they can observe your reaction to help you get it out but sometimes you need a person that can say listen, you are doing this and it’s based on your illness or your symptoms.”

“Just to respond to me as if, um, as if, I was talking normally, so not to react to the volume or the anger in my voice but just to ask the questions as you would normally ask and to be curious as to like why I was in that state…you say oh, I had a good day today, how was your day? Did you go out to eat, what did you have to eat?” you know, try to calm them down sit and be nice to them, talk to them like you would talk to anyone… ”

Domain 4: Resources and Information

The resources and information domain reflects support related to obtaining community resources (e.g., housing, financial, medical, legal, vocational, and treatment-related). Participants described two categories of resources and information support: a) knowledge of resources and b) support accessing and receiving services. With respect to knowledge of resources, participants described:

“She knows where all the resources are and which one’s would fit for me and which one’s wouldn’t.”

“…he gives me information on things and he give me, if he don’t know nothing about it, he’ll point me to someone else that can like help me and stuff like that and I can just talk to him about what’s going on in my house, just talk to him about, you know anything.

Participants described support related to accessing and receiving resources to include such tasks as completing paperwork and making calls with or on behalf of the client, advocating for the individual to gain access, and assistance with navigating the system. For example, participants described:

“…she brought me to DMV personally and helped me get my CA DL, she brought me GA personally and registered me for general assistance and helped me with food stamp application like EBT”

“She got me into the programs, I didn’t know nothing about no programs, they got me a psychiatrist and got me on some medication, and then the voices started going away, I stopped feeling so paranoid all the time.”

“I’m very grateful that my case manager navigated for me these resources and then left it up to me after holding my hand for two weeks to go one step further.”

“so finally he just woke me up, he said, today’s session will be us strolling down there and doing it and you know, we got it done…so yeah, I mean, but that’s just one really concrete example of damn, the guy put $100 bucks a month in my pocket.

Of particular salience were participant descriptions of supports related to housing and vocational resources:

“she got me into this place and I had to wait ten months almost like ten and half almost eleven months to get in here and then I got in here and I wasn’t really sure that I wanted to be here but…yeah she’s a good person…”

“She helped me get from, once I got out of custody and the residential treatment program, then I moved in with the person I was seeing, and she, we were going through problems and she helped me get into an SRO faster.”

“I have an employment specialist here that’s been working with me one on one about um, finding work …. A whole host of services for me, everything from paying for my transportation costs to um, the um Microsoft Office course that I’m taking here so to that end it’s very helpful um…”

“I have an employment specialist here that’s been working with me one on one about um, finding work and then they referred me to the Department of Rehabilitation and now I have a one on one caseworker if you will, I guess he’s a client services representative at the Department of Rehab, they’re job is specifically to place people with disabilities in the job market so that’s sort of helpful…”

“As far as getting to work, she gives me a ride to work every day…and I appreciate that.”

Domain 5: Guidance and Advice

The guidance and advice domain in this context is characterized by the provision of useful information that is requested by the recipient and is specific to a particular situation. More specifically, guidance and advice involves a type of support that involves the provider directly advising on how to manage a difficult situation or problem. Guidance and advice was characterized by the following two categories: a) advice, guidance and suggestions and b) direct feedback and reality testing. For example, participants described the following examples of advice, guidance and suggestion support:

“…she’s given me some great advice. She really has and sometimes the answer is well, that’s just the way it is, there’s nothing you can do about it, so, it’s nice to know that. I like it if it is like that she’ll just come right out and tell me.”

“…and the stuff that she’s had experience with so she can help guide me and guide me through the woods. So that’s very helpful.”

“…it’s about telling it directly, but maybe I just have to just tell them I need you to tell me what I need to do sometimes.”

Participant descriptions of support related to direct feedback and reality testing include:

“…letting you know when you’re acting inappropriate in a situation without getting on your case about it and that’s giving someone a little nudge in what you think is a right direction”

“If I ask for it they give me helpfully confrontive feedback and they don’t try to fix me they just, if I say what do you think what would you do or how do you see this, they give feedback but otherwise they just listen to my experience um.”

“…they saw things that even if I didn’t agree with them and even if I still don’t agree with some things but I know in the long period, in the big picture the decisions that were made…it’s been beneficial for me.”

“Yeah, like, you need to know what you’re doing wrong before you can change it. You need to know and be told that you’re doing that wrong and you need to do some kind of contract…”

Domain 6: Community Socialization Support

The community socialization support domain refers to support that assists participants in locating and accessing social and recreational activities to which they may participate on their own, and/or with the support provider. Participants described two categories associated with this domain: a) recreation, leisure and other support and b) relationship and friendship support. For recreation, leisure and other support, participants described:

“…like one time she bought me concert tickets. I wanted to go see this heavy metal concert and she bought me the tickets and I did the contract and I got to go.”

“[she] calls me a lot you know and he gets me out the house you know, gets me to go places you know and get away from the area in which I’m in you know, lets go do something, just somebody to go to the store or go down to the church, let’s go do something, or go out to where everybody sits and do something else, you know. So, I feel that I’m grateful for that…”

“My mom and the one in my board and care, they told us about the church nearby my board and care so I go there every Sunday, I go to the church every Sunday. And also sometimes on the weekend, my mom and my dad and my sister and my brothers, we go outside in the restaurant. Or we go to festival, like green festival or pride parade, gay parade, yeah we go out every weekend I’m out with my parents and my sisters and my brothers.”

The category relationship and friendship support refers to support around facilitating social connections. For example, participants stated:

“I mean even that just like in my life since I was 18 she’s always tried to encourage me to have more social support. Um, she’ll try to introduce me to people, doesn’t always work but you know, I appreciate the effort…”

“[she] has always encouraged me to become involved in other groups and some women’s groups and through that and through my case manager where I live I’ve been able to do that and the greatest thing that happened to me was through a women’s group that I belong to…”

Discussion

Using a broad conceptualization of social support as our guide that acknowledged two main types of support – emotional and instrumental support – our exploratory study revealed six unique types of social support salient to adults living with SMI: a) Supportive Conditions, b) Day-to-Day Living, c) Illness-Management, d) Resources and Information, e) Guidance and Advice, and f) Community Socialization Support. While our support domains share some broad-based conceptual underpinnings with traditional models of emotional and instrumental support, the domains emerging from our study represent supports uniquely tied to the stressors associated with living with an SMI, and therefore hold some conceptual distinction from traditional types of support.

Supportive conditions

Supportive conditions, which is most conceptually tied to Cohen’s (1984) concept of emotional support (i.e., provisions offered in an affirming manner, that relays being loved, cared for, esteemed and valued), represents specific SMI-related emotional and/or attitudinal conditions needed for any act or provision to be perceived as supportive. Specifically, the supportive conditions of acceptance and affection, hope, growth and recovery, and an understanding of mental illness were described to encompass areas unique to living with SMI. For example, acceptance within this context taps into a support providers’ attitude towards mental illness, which is particularly important given the stigma, discrimination and intolerance that persons with SMI experience. Persons with SMI experience high levels of societal and internalized stigma leading to negative beliefs about themselves, their peers with SMI, and contributing to negative outcomes. Thus, a supportive condition of acceptance and respect has the potential to buffer the negative impact of stressors associated with stigma and discrimination, and may facilitate positive outcomes. Notably, these supportive conditions of acceptance and respect are well aligned with the Recovery model’s principle of respect for persons with SMI through community, system and societal acceptance and appreciation for people affected by mental health (U. S. Department of Health and Human Services, 2011).

Acceptance in this context also taps into the provider’s ability to understand the person’s unique experience living with mental illness, empathizing with the person’s situation, while at the same, viewing the mental illness as one aspect of the individual. Paralleling Wright’s (1984) model of Disability Acceptance which suggests that persons who cope with their disability (versus succumb to their disability) contain the effects of their condition, our findings suggest that to be supportive, providers also need to contain the effects of SMI, accepting mental illness as part of the individual, yet seeing the individual as more than their SMI. In this vein, an accepting condition involves understanding and validating the unique, personal experiences of the individual’s mental illness (e.g., what does living with a mental illness mean for the individual?), while at the same time interacting with the whole person. This condition is consistent with the Recovery models message that recovery is holistic and that individuals are unique with distinct needs, strengths, preferences, goals, culture and backgrounds (U. S. Department of Health and Human Services, 2011).

Instilling hope, growth and recovery were also identified as important supportive conditions. These conditions are well aligned with a fundamental assumption of the recovery model that states that recovery is engendered by people who believe in the person’s ability to recovery, who offer hope, support and encouragement to overcome challenges and barriers (U. S. Department of Health and Human Services, 2011). Our findings reflect participants’ desire for supportive acts that are embedded in a message of hope and growth – a strength-based message that has the potential to buffer the negative emotions of hopelessness, loss of control and low self-esteem that so often plague persons living with SMI.

Day-to-day living support

Participants described a particular type of support, day-to-day living support, which represents tangible assistance with food, clothing, transportation, money, appointments as well as the provision of daily “check-ins.” Indeed, persons with SMI frequently have unmet basic living needs (citation) linked to various SMI-related stressors such as poverty, homelessness and unemployment, and therefore supportive acts related to the provision of food, clothing, money and transportation may buffer the negative impact of these stressors and facilitate more positive outcomes. Day-to-day living support also includes assistance with remembering and getting to appointments. Persons with SMI are often connected to numerous health, mental health and allied social service agencies, and navigating appointments within a service-delivery system often characterized as large and fragmented, is a significant barrier to benefiting from available services (Hogan, 2003). Appointment support may increase the probability that the individual will access needed health, mental health and other social services, while potentially reducing the negative impact of the stress associated with navigating a fragmented service delivery system. This type of support has the potential to facilitate a more integrated and coordinated service delivery experience for persons with SMI – a priority identified in the Recovery model (U. S. Department of Health and Human Services, 2011). “Check-in” support was another category that emerged in the day-to-day living domain. Check-in support was described as regular (e.g., daily or weekly) home visits or phone contact in which the provider briefly inquired about the participant’s well-being. This type of support was not described to include lengthy meetings or counseling/psychotherapy, but a brief greeting and inquiry into the participants’ well-being on a particular day. This type of support has the potential to buffer the well-documented stressors of loneliness and isolation common among persons with SMI (citation) by facilitating a consistent sense of connection.

Illness management

Persons with SMI experience illness-related stressors ranging from mild symptom distress to suicidal ideation. Participants described the need for particular types of instrumental supports related to these stressors including medication support, crisis management support and illness-management behavioral support. Medication is a common intervention for persons with SMI – a front line treatment for SMI – and a typical intervention for co-morbid health conditions (e.g., diabetes) highly prevalent among this population (Parks et al., 2006; Sajatovic, Dawson, Perzynski, Blixen, Bialko et al., 2011). Nonetheless, persons with SMI experience many stressors associated with daily medication regimens including unwelcome side effects, interfacing with providers of psychopharmacological treatments, and the practical and psychological adjustment associated with a proposed lifetime of prescribed medication adherence. These stressors likely contribute to the appreciable number of persons with SMI who are nonadherent, which has been reported to be as high as 40-50% (Medicaid Health Plan of America Center for Best Practices, 2013). Our participants spoke about the desire for daily medication reminders, support related to facilitating medication re-evaluations, and advocacy support within the context of providers of psychopharmacological treatment. This finding is consistent with prior qualitative findings that described “helping with medication” to be an important type of instrumental support for persons with SMI (Walsh & Connelly, 1996). Our findings are also consistent with the larger body of medication adherence literature that links social support, particularly “practical support” to medication adherence (DiMatteo, 2004; Shumaker & Hill, 1991; Wallston et al., 1983).

Participants also described the need for illness-management behavioral support. They voiced the desire for providers to support them through stressful mental health symptoms through such strategies as reality checking, facilitating stress management techniques, and offering a new perspective on their condition. These findings are consistent with the growing body of illness-management research among persons with chronic illness and persons with SMI showing that the acquisition of new information and skills focused on managing symptoms produces positive outcomes (Cook et al., 2011; McCormack et al., 2008; Sajatovic et al., 2011). Specific to SMI, a number of studies have provided evidence that such illness management programs as the Illness Management and Recovery program (Gingerich & Mueser, 2005) and the Wellness Recovery Action Planning (Cook et al., 2011) produce positive outcomes (Cook et al., 2011; Mueser, Corrigan & Hilton et al., 2002; Salyers, Godfrey, McGuire et al., 2009). Our findings provide additional support for these interventions, emphasizing the need for support providers to offer direct illness-management behavioral support and support related to the development of illness-management skills.

Resources and information support

Resources and information support represents another type of instrumental support that was described by participants and involves support related to the knowledge of, and access to, community resources. Specifically, participants described persons who were knowledgeable of available mental health, housing, financial, medical, legal/criminal justice, substance abuse, and vocational resources as supportive. In addition, participants described tasks linked to accessing these resources and services (e.g., completing paperwork, making calls on behalf or with the client, advocating for access, and assistance navigating the system) as supportive. This type of instrumental support is particularly important given the challenges associated with navigating complex and fragmented service delivery systems. In addition, this type of support has the potential to reduce the stress associated with interfacing with service delivery systems, increasing the likelihood of service benefits and treatment adherence.

One of the most salient areas discussed in the resources and information domain was housing. Indeed, persons with SMI are represented disproportionally among the chronically homeless (Weinstein et al., 2013) and this was consistently described as a significant stressor among our study participants. Support for accessing safe shelters, temporary housing, and gaining permanent housing was identified as vital, and is consistent with one of the major dimensions identified by the U. S. Department of Health and Human Services (2011) that support a Recovery approach; namely, having a home – a stable and safe place to live. Our data also supports existing empirical research that links stable housing to better life satisfaction, empowerment and emotional well-being (Lehman, Kernan & DeForge, 1995; Lehman, Slaughter & Myers, 1991; Nelson, Hall & Bowers, 1999) and reduced admissions to hospitals, jails and shelters (Culhane, Metraux & Hadley, 2002; Gulcur, Stefancic & Shin, 2003). Importantly, while housing was described to be a particularly important type of resources and information support, studies suggest that few psychosocial rehabilitation programs offer housing/residential support services (Lucca & Allen, 2001).

Guidance and Advice

The guidance and advice domain emerging from our study supports the larger body of social support literature suggesting that informational support – a distinct type of support that is most often conceptualized in the literature as providing facts, advice, opinions and information (Bambina, 2007; Braithwaite, Waldron & Finn, 1999; Civan & cPratt, 2007; Coursaris & Liu, 2009; Cunningham, van Mierlo, & Fournier, 2008; Eichhorn, 2008; McCormack, 2010; Pfeil & Zaphiris, 2007) to facilitate action towards assisting the support receiver in solving or eliminating problems causing stress (Cutrona & Suhr, 1992) – may buffer the negative impact of stress. Guidance and advice in this context was characterized by the supporter providing useful information that was requested by the recipient specific to a particular situation. To some degree, this reflects a type of problem-solving support, wherein persons with SMI describe the benefits of having a support provider tell them directly how to manage a difficult situation. This is consistent with the larger body of social support literature that suggests that advice offers ideas and suggests actions for coping with challenges by providing detailed information about the situation or skills needed to deal with the situation (Chuang & Yang, 2014). Indeed, a number of studies suggest that advice is a common way for individuals to respond to others’ problems and involves prescribing what a person should or should not do (Cowen, 1982; Cutrona & Suhr, 1994; Cutrona et al., 1990; DAugelli & Levy, 1978; Knapp, Stohl & Reardon’s, 1981; Reisman & Shorr, 1980)

Participants also referenced the importance of the support provider’s experience or expertise when providing this type of support. In other words, participants described an important contextual element for this type of support; namely, the benefits of advice and guidance are contingent upon the expertise of the provider. This is consistent with prior research that suggests that the perceived helpfulness of advice depends on the expertise of the adviser with reference to a particular problem (Cutrona & Suhr, 1994; Dakof & Taylor, 1990). Thus, this domain is likely most beneficial when the person with SMI shares or confides a particular issue or problem with an individual who has expertise or experience in the area.

Importantly, although advice and guidance is a common type of support, research suggests it is not always perceived as helpful (Cutrona & Suhr, 1994; Dunkel-Schetter, 1984; Dunkel-Schetter, Blasband, Feinstein, & Herbert, 1992; Goldsmith, 1994; Lehman, Ellard, & Wortman, 1986; Notarius & Herrick, 1988; Pearlin & McCall, 1990; Tripathi, Caplan, & Naidu, 1986), and there are many factors to consider with respect to insuring advice and guidance is supportive for persons with SMI. For example, does the supportive behavior promote autonomy or facilitate dependency? Is the behavior culturally appropriate (Philipsen, 1992)? Does it instill feelings of obligations (Goldsmith & Fitch, 1997)? Was it offered as an immediate response to the statement of a problem or followed after the supporter listened and responded sympathetically (Pearlin & McCall, 1990)? While advice may be appropriate at times, these contextual elements are important to consider when determining the supportive nature of advice and guidance for persons with SMI, particularly given the recovery model principles of consumer decision-making and choice.

Community socialization support

Community socialization support, in this context, was described as instrumental support to assist participants in locating and accessing social, leisure and recreational activities to which they may participate on the their own, and/or with the support provider (e.g., assistance with purchasing tickets for an event, identifying local community events, and/or support that involves joining the individual in a social event). Importantly, this type of support is perceived as supportive to the extent that it involves facilitating enjoyable activities that are meaningful to the individual, supporting access to activities beyond agency-organized group activities. The need for the support provider to explore and validate the individual’s personal interests was described as a particularly important aspect of providing this type of support – which may be challenging due to the sociopolitical and psychological factors attached to SMI. Specifically, the stigmatizing perception that personal interests and desires do not exist for persons with SMI, coupled with the widespread view of social skill deficits among this population, may contribute to difficulties supporting and exploring social, recreation and personal interests among persons with SMI.

Davidson and Stayner (1997) poignantly describe three perspectives on the social lives of people with schizophrenia including an “empty shell” (clinical perspective), a poker player (family members), and a “caged panther (persons with schizophrenia), revealing the need for support providers to look beyond the negative symptoms so often experienced by persons with SMI and explore with the individual, their personal interests and desires. This type of support has the potential to buffer the stress associated with isolation and loneliness and increase the opportunities for persons with SMI to be involved in activities and social roles alongside those without disabilities (Wong et al., 2009). In addition, this type of support may increase the size and nature of a person’s social network – which has been consistently identified as significantly smaller for those with SMI than the general public (Albert, Becker & McCrone, 1998; Baker, Jodrey, Intagliata & Straus, 1993; Harris, Brown & Robinson, 1999; Mueser & Tarrier, 1998) and comprised of a much lower number of social ties with non-family members (Meeks & Murrell, 1994; Wong et al., 2009).

Limitations

Our study was qualitative in nature and therefore our findings cannot be generalized. In addition, the sample was diagnostically heterogeneous and thus our findings can only be interpreted within the context of SMI. While we had a broad representation of gender categories in our sample, there were fewer women than men participating in the study, and the sexual orientation of our participants was unknown. Finally, our study was limited by the potential negative effect of not being able to guarantee confidentiality among the group members. Specifically, while we encouraged group members to keep shared information confidential, we could not prevent participants from sharing outside the group. This may have prevented some participants from disclosing sensitive information.

Implications and Conclusion

Findings from this study offer a conceptual framework for understanding social support for persons living with SMI and lay the groundwork for the development of a SMI-specific measure of social support. In addition, our research permits future researchers to investigate the conditions under which social support buffers the impact of SMI stressors, assisting service providers in more effective identification of individual support needs for clinical intervention. Given the exceedingly high rates of morbidity and mortality among persons with SMI that result from preventable medical conditions (e.g., cardiovascular disease, diabetes, respiratory disease, HIV/AIDS) (Parks, Sveden, Singer & Foti, 2006), identifying the interactions of SMI-specific support needs with SMI stressors has the potential to reduce health risks and increase wellness behaviors. Our study will also add to the growing body of research on disease-specific types of support to advance the clinical and research utility of such support.

In conclusion, our findings have both clinical and theoretical significance. Our findings have the potential to provide researchers with the data necessary for developing and validating clinical interventions that extend beyond generic social network enhancements to target and enhance SMI-specific types of support. In addition, our findings advance research on the stress-buffering theory of social support by providing a vehicle for identifying the interactions between specific types of support and chronic SMI stressors (i.e., homelessness, unemployment, isolation, poverty, stigma, illness management)—information that will have significant clinical impact on improving quality of life, wellness, and recovery in a vulnerable population.

Impact

• Findings from this study offer a conceptual framework for understanding social support for persons living with SMI and lay the groundwork for the development of a SMI-specific measure of social support.

• Our research permits future researchers to investigate the conditions under which social support buffers the impact of SMI stressors, assisting service providers in more effective identification of individual support needs for clinical intervention. Given the exceedingly high rates of morbidity and mortality among persons with SMI that result from preventable medical conditions identifying the interactions of SMI-specific support needs with SMI stressors has the potential to reduce health risks and increase wellness behaviors.

• Our study will add to the growing body of research on disease-specific types of support to advance the clinical and research utility of such support.

Table 2.

Domains	Definition
Supportive Conditions	Mental Illness Knowledge
	Enduring Attitude of Acceptance and Affection
	Enduring Attitude of Respect, Worth, and Value
	Instilling Hope, Growth, and Recovery
Day-to-Day Living
	ADL Support
	Appointment Support
	Check-in Support
Mental Illness Management
	Medication Adherence Support
	Symptom Management Support
Resources and Information
	Knowledge of Resources
	Support Accessing and Receiving Services
Guidance and Advice
	Advice, Guidance, and Suggestions
	Direct Feedback, and Reality Testing
Community Socialization Support
	Recreation, Leisure, and Other Support
	Relationship and Friendship Support