The Meaning of Social Support for Persons with Serious Mental Illness: Family Member Perspective

Abstract

Social support is essential to the health and well-being of persons with SMI and family members are a primary source of this support. Despite the primary role of family in the lives of persons with SMI, family is an understudied source of support. This study investigated the types of social supports beneficial for persons with SMI from the perspective of family members. Method: Participants were 14 adult family members recruited from a Bay Area NAMI who provided regular support for a family member with SMI. Focus group data was analyzed using NVivo10 and Consensual Qualitative Research. Results: Results revealed five support categories: a) person-centered support, b) autonomy support c) community participation support, d) health management support, and e) day-to-day living support. Discussion: Results represent family supports uniquely tied to the stressors associated with living with an SMI and are conceptually distinct from traditional models of social support. Findings are aligned with the mental health recovery model and self-determination theory. Conclusion: Results advance our understanding of SMI-specific types of social supports by describing five support categories grounded in the voices of family members supporting a loved one with SMI.

Mental illness is one of the most disabling conditions worldwide (Whiteford, Ferrari & Degenhardt, 2016) with major depression, bipolar disorder and schizophrenia constituting three of the four most burdensome conditions globally (Gore et al. 2011). Disability associated with mental illness cost the global economy two and one-half trillion dollars in 2010, and is projected to cost six trillion dollars by 2030 (Insel, 2008). Serious mental illness (SMI), defined as a mental, behavioral, or emotional condition that results in significant functional impairment, has even more deleterious effects on individuals, their communities and society, by substantially interfering with functioning and life participation. More aptly defined as a prolonged disability, impairment, or the secondary consequences resulting from living with the condition rather than the condition itself (Davidson, Rowe, Tondora, et al., 2008), SMI is experienced by nearly five percent of the U.S. population and it is the leading cause of disability in the U.S. (National Institute of Mental Health [NIMH], 2019). Persons with SMI experience significant stressors associated with poverty, stigma, homelessness, and isolation – long understood to be barriers to functioning and societal participation – which elevate the risk of morbidity and mortality (Panayiotopoulos, Pavlakis, & Apostolou, 2012). In fact, the life expectancy of persons with SMI is an alarming 25-30 years less than that of the general population (Colton & Manderscheid, 2006). The societal impact of mental illness is particularly concentrated among those who experience disability due to SMI, with SMI projected to account for the biggest burden of care among all health conditions by 2020 (NIMH, 2019). Persons with SMI have numerous support needs that are inadequately met (Cohen & Peachey, 2014; Rinaldi, Perkins, McNeil, Hickman & Singh, 2010), with one study reporting that over 70% of individuals with SMI did not receive the support they needed (Cummings & Kropf, 2009). As such, social support has received increasing attention as an important treatment tool, achieving national attention as a key component of the mental health recovery approach (Mezzina, Davidson, Borg et al., 2006). Specifically, community, or the relationships and social networks that provide support, friendship, love, and hope, is one of four primary dimensions of recovery and is addressed in three of the ten guiding recovery principles (U.S. Department of Health & Human Services, Substance Abuse & Mental Health Services Association, 2020).

Social support refers to any process through which social relationships promote health and well-being (Cohen, Gottlieb & Underwood, 2001) and includes such definitions as supportive functions performed by family and other significant others (Thoits, 2011), a social network’s provision of psychological and material resources to support coping with stress (Cohen, 2004), and the commitment, caring, and advice provided through relationships or networks (Umberson, 1987). Within the context of SMI and other disabling conditions, social support is best explained through the lens of the WHO’s International Classification of Functioning, Disability and Health framework ([ICF], WHO, 2001) which conceptualizes social support as a personal or environmental factor that interacts with function and context to reduce the risk for, or level of, disability (Farber, Kern & Brusilovsky, 2015). Two overarching typologies of functional social support have been consistently identified as the most salient and encompassing types of support, namely, 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; Cutrona & Russell, 1990). Sources of functional support include primary ties, or informal, non-paid, family and friend support, and secondary ties, or more formal, paid supports (e.g., healthcare providers, peers, neighbors, co-workers, or community acquaintances; Thoits, 2011). Primary ties tend to be more constant in a person’s life and are more likely to be considered a primary source of emotional support, whereas secondary ties typically come in and out of an individual’s network, and are more likely to provide instrumental support (Thoits, 2011).

Although secondary ties with case managers and other service providers are common among those with SMI, the provision of social support for those living with SMI has, over the years, fallen most pronouncedly on family members (Awad & Voruganti, 2008; Pedersen & Kolstad, 2009). An estimated 35%–75% of adults with SMI live with family members or relatives (Bengtsson-Tops & Hansson 2001; Kaufman, Scogin, MacNeil, Leeper & Wimberly, 2010) and many more families are actively involved in their relative’s life despite residing separately (Haselden, Dixon, Overley et al., 2018). Family members have been identified as the main supportive contact for those with SMI, and studies show they provide the greatest amount of support in the areas of self-care, psychiatric distress and money management (Bengtsson-Tops & Hansson 2001; Cummings & Kropf, 2009). Despite the primary role of family in the lives of persons with SMI, family members are an often overlooked and understudied source of support (Roseland, Heisler, Janevic et al., 2013). In addition, there is limited research investigating the unique types of social supports relevant to those living with SMI, and no studies investigating SMI-related supports from the perspective of a family members. Therefore, the purpose of this study was to explore the meaning of social support for persons living with SMI from the perspective of family members providing support to a loved one with SMI. Our study is a direct response to the need to advance our understanding of the specific types of support salient to persons with SMI to allow for more accurate social support assessment and intervention for the SMI community. In addition, our research is aligned with the scientific advancements in social support made with other chronic health condition and disability populations such as diabetes, cancer and multiple sclerosis (e.g., McCormack, Williams-Piehota, Bann, et al., 2008; Taskila, Lindbohm, Martikaimen et al., 2006; Yanover & Sacco, 2008).

Method

Participants

The sample was comprised of 14 adult family members living in the Bay Area who care for an individual with an SMI. None of the participants were related or cared for the same individual, reflecting the experiences of 14 distinct family members who cared for 14 individuals with SMI. Participant’s average age was 51.21 (SD=14.86), and 79% percent (11) identified as female and 21% (3) as male. Eighty-six percent (12) identified as White and 14% (2) as Asian American/Pacific Islander. Seventy-one percent (10) were currently married, 14.3% (2) were single/never married, 7% (1) were separated, and 7% (1) were living with their partner. Fifty percent (7) completed a graduate degree, 43% (6) completed a bachelor’s degree, 7% (1) completed an associate’s degree. Forty-three percent (6) were employed full-time, 36% (5) were employed part-time, and 21% (3) were not employed. Participant type of relationship with family member with SMI included thirty-six percent (5) mothers, 36% (5) sisters, 14% (2) offspring, 7% (1) father and 7% (1) brother and the average length of time participants were in the relationship was 31.3 year (SD=16.15, range 1.5 years to 67 years). See Table 1 for a complete list of demographic variables and frequencies.

Table 1.

Means, Standard Deviations, and Frequencies of Study Variables Sample (N=14)

Variable	#/%	M	SD
Age		51.21	14.86
Length of relationship (years)		31.34	16.15
Frequency of interaction (per week)		1.92	.92
Distance from person with SMI (miles)		3.4	2.44
Gender
Male	3 (21.4)
Female	11 (78.6)
Race
Asian American/Pacific Islander	2 (14.3)
White	12 (85.7)
Education
Associates Degree	1 (7.1)
Bachelor’s Degree	6 (42.9)
Graduate Degree	7 (50)
Marital Status
Single/Never Married	2 (14.3)
Currently Married	10 (71.4)
Separated	1 (7.1)
Living with Partner	1 (7.1)
Employment Status
Full-Time	6 (42.9)
Part-Time	5 (35.7)
Not Employed	3 (21.4)
Income
Below 20K	1 (7.1)
Between 20K - 40K	2 (14.3)
Between 41K - 60K	1 (7.1)
Between 61K - 80K	3 (21.4)
Between 81K-100K	2 (14.3)
Relationship to Person with SMI
Mother	5 (35.7)
Father	1 (7.1)
Offspring	2 (14.3)
Sister	5 (35.7)
Brother	1 (7.1)

Procedures

The primary research team consisted of three female professors (one White, one Taiwanese, one Japanese and White) and two graduate students (one African American and White female and one White male). The White female professor and two graduate students conducted the focus group interviews. The White female professor, the White and Japanese associate professor, and the two graduate students completed the data analysis. The Taiwanese female associate professor’s only role in this research project was the external auditor. The primary investigators have experience conducting research and working with persons with SMI and their families, and have experience conducting qualitative research and using 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, and 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 (Hill et al., 1997; Morrow, 2005). Participants were recruited from the Bay Area NAMI. 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 included: a) currently providing regular support and care to a family member or close friend with SMI; b) age 18 or older; c) ability to speak and understand English; and d) willingness to participate in a focus group and be audio-recorded. Participants were excluded if they identified as an individual with an SMI or were in contact with their family or friend with SMI less than once per/month.

Three focus group interviews were conducted, with four-five participants in each group. The focus groups were held in a university setting, a location that family members voiced was easily accessible. Recommended by Krueger (1998), one research team member served as the focus group facilitator and two graduate student researchers served as observer/note-takers. All focus groups were conducted by the same group facilitator and observer/note-takers and the same procedures were implemented across all three focus groups. Prior to the start of each focus group, informed consent was obtained from each participant. The facilitator reminded participants that all information shared in the focus group would be kept confidential by the researchers. Participants were also encouraged to maintain confidentiality regarding the information shared in the meeting. In addition, the process and format of the focus group was explained. Focus group interviews lasted approximately 90 minutes and were audio-recorded. The audio-recordings were transcribed verbatim using NVivo10 (QSR International, 2014) and each transcript was checked for accuracy by the first and second authors.

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 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 and researchers were independent from participants’ treatment and 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. Transferability was addressed by providing sufficient contextual information related to participants, the data collection method and our timeframes (Marchionini & Teague, 1987; Pitts, 1994). The researchers worked to establish dependability by documenting each step of the research design and continually evaluating the effectiveness of the process of inquiry used (Morrow, 2005; Shenton, 2004). Confirmability was ensured by an external auditor who reviewed the original transcripts and compared their 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 through discussion and reflective commentary (Shenton, 2004).

Measurement

Participants completed a demographic form prior to the start of each focus group. The focus group protocol was designed to elicit discussion about participants’ experiences with providing social support to their family member with SMI in the recent past. Participants were asked by the moderator at each focus group the following question: In the recent past (in the last couple weeks), what types of supports have you provided or wanted to provide your family member with an SMI? We asked family members to think behaviorally and specifically; namely, what family members have said or done that they perceived to be supportive; or, things they would like to have provided but were unable. 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 additional responses at the end of the focus group.

Data Analysis

Consensual Qualitative Research (CQR) was employed in this study (Hill, Knox, Thompson, et al., 2005). The CQR method involves the use of semi-structured 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. Focus groups have been identified as an effective approach for generating meaning in areas that have not been empirically investigated (Krueger, 1994). The use of focus groups for this study is consistent with recent investigations using focus groups to better understand issues related to mental illness (e.g., Aschbrenner, Carpenter-Song, Mueser, et al., 2013) and multiculturalism (e.g., Cruz-Santiago & Garcia, 2011; Kordesh, Spanierman, & Neville, 2013).

In the first phase of data analysis, each team member reviewed one transcript at a time independently and segmented the data into preliminary domains. A team meeting followed each independent review to determine by group consensus a domain list. This process occurred three times for each transcript. Following the development of the three domain lists, a final domain list reflecting the major domains across the transcripts was created and agreed upon through consensus over the course of three team meetings. The second phase of analysis involved constructing core ideas to abstract the data within the domains. Specifically, each team member independently identified direct quotes linked to each domain across each of the three transcripts and input all direct quotes into a spreadsheet organized by domain. The research team then worked together over the course of three team meetings to articulate more succinctly the core ideas reflected by the quotes within each domain. The core ideas were provided to the external auditor to insure the core ideas were within the appropriate domain. Feedback from the auditor was carefully reviewed and incorporated through group consensus. In the third phase of analysis, we cross-analyzed the core ideas for each domain across the transcripts to develop categories that reflect common themes across the transcripts. Each team member generated categories independently, followed by two team meetings 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

Our study found five SMI-specific family support categories: a) person-centered support; b) autonomy support; c) community participation support; d) health management support; and e) day-to-day living support. Importantly, these categories represent perceived family support processes versus outcomes and cannot be interpreted as beneficial or contributing to positive outcomes given the nature of our qualitative study. Results are described below.

Person-Centered Support

Person-centered support was described as communication that enacts acceptance and valuing of the individual, their symptoms and their mental illness; an interest, curiosity, and understanding of the individual’s unique experiences, beyond those linked to living with an SMI; a legitimization and validation of the individual’s feelings and perspectives, and encouragement to explore, understand and contextualize their feelings. Person-centered support includes concise, and concrete language that enhances specificity and clarity (versus abstract, vague language). For example, participants described the following:

I validate what my daughter is saying and to kind of listen to what she is saying and validate her emotions even if I don’t necessarily agree with what she’s saying but I can still validate the feelings that she is having. I say, oh that must be awful to know what people think or for you to think that people are doing this

What she’d say is how she loves art and its helps her respiratory system and I didn’t really know what that meant, so I was just said, Oh, okay, so art makes you feel alive and so sticking to the conversations and kind of rolling with it even if I don’t understand it or if what I’m saying makes sense

I say, that’s good insight, so I repeat those words so that at some point maybe it will sink in, that those are her symptoms and she has insight into herself

Another thing that’s helpful is making plans ahead of time and clarifying, and explaining when things are going to happen. I can’t have real elaborate conversations or instructions so really keeping it to a minimum

if something is coming up, to describe when it is, give a lot of advanced notice if you can.

I learned to say I love you and I can’t help you with that. I learned to say I love you and never I love you but…

Autonomy support

Autonomy support was described as respecting and encouraging personal choice and decision-making and fostering volitional actions aligned with the individual’s interests and goals. Autonomous support promotes the identification of recovery goals that are meaningful to and activated by the individual. Autonomy support requires family members to relinquish some degree of decision-making control and reduce the tendency to rescue their loved one from difficult situations or decisions. For example, participants described:

I had to learn how to respect her choices, the decisions that she makes even though they are not logical or they can be embarrassing from the things that she wears when it’s winter or summer.

I’ve stopped being a helicopter parent you know because it diminished her and took away her confidence in her own problem-solving ability by always rescuing her

I really do try and work hard on not making the decision for her and just being willing to accept whatever it is even if it’s a lie the last thing I think she should do

I never try to make the decision for her and well I’m trying not to anyway.

Supporting her is the key. I think that I was taking away from her when I was saying you are not able to find your own space or rent your own space and you are not considered responsible. You can’t do that. That was I guess the problem

I was again handing her the solution in a ready package and she wanted to feel more empowered, so I gave her the opportunity to kind of take care of the place. At some point I tried different versions of help you know in terms of taking care of the bills, cleaning and so forth

Autonomy support also involves communicating in a manner that reflects a curious inquiry into the loved one’s situation versus providing the answer, direction or advice. Family members described autonomy support to include asking questions about their loved ones’ situation or dilemma and providing tentative suggestions, versus making decisions for their loved one or providing direct advice. For example, participants described:

Just try to ask her questions rather than trying to tell her well this is the pro and this is the con. I try to ask and then

I know that when we tell her to do something, it makes her irritated and it just pipes things up so allowing her to be herself in a way from the things she purchases. If she has cash, she will purchase things she just doesn’t need in multiple quantities”.

I find the balance between pushing a little bit in a supportive way and not overwhelming her with some kind of request that’s she’s obligated to success like getting a job or making money. She needs to be like everybody.

Sometimes I feel like a dictator…It doesn’t work that way so I have to offer some suggestions and then let her make up her mind because she’s able and she’s smart sometimes I have ideas and my way of expressing them is overwhelming…so I have to redefine myself and because I am a little bit of an aggressive personality and too expressive…I need to take it down a notch with her and try to present my idea as more of a suggestion than I have the solution already for you.

Community Participation Support

Community participation support was described as initiating and planning community activities aligned with their loved one’s interests, offering choices, accompanying a loved one with SMI into the community, providing the instrumental support needed for community participation (e.g., transportation, money, etc.), and including the loved one with SMI in family member community engagements. For example, family members described accompanying their loved one, or providing companionship, to community activities that are aligned with their loved one’s interests and desires:

I take him to the library because he has a real interest in reading and I’ve tried to find him some books and tried to get him to go look because he has trouble with initiative.

I take him out to eat or go out for coffee and I think those little things make a huge difference

He [brother] likes bagels and coffee and we usually do that. It’s like his thing, bagel and coffee. We go out to eat and do anything food related

For the most part she [sister] has no social life and she doesn’t get around anywhere. She’s in the house so what I try to do is to take her out to places, places she wants to go even if it’s a short period of time and I try to treat her to do things that she wants to do.

I try to do things that she [sister] has pleasure in doing because I am the primary access to that.

Family members also described sharing their own personal interests with their loved one and including their loved one in their own social engagements. For example:

She [sister] was in a step-down unit for a while and she was kind of stuck there and I started to go to the city to do swing dance and I always tried to get her interested and see if she would come. There was a window of opportunity when she wanted to get away from the place and they let her go with me to swing dance class and she really likes it and so every once in a while, she’ll want to go

My role can be kind of as a friend. He [his brother] doesn’t really have any friends to speak of as all of his friends from the past are just gone so I try to include him in things that we can and have in common. If I’m going out to get a drink with my friend I’ll ask him if he wants to come or at least if I can pick up something for him. I just offer for him to come…I think it’s helpful to fill that need for just some kind of companionship

From time to time if there’s music that really resonates with me, I will share that with her and to keep that available and accessible to her because it really does something for her

Family members described community participation support as that which consistently provides their loved ones with a variety of activity options with the hope that one option may peak their loved one’s interest. For example, one family member stated, “it’s like throwing stuff at the wall. What sticks, you never know.” Family members emphasized that they are often the only source of community participation support and thus emphasized the need to honor their commitments. For example, one participant stated:

If you make commitments, really try to keep them because of the expectations and you know their social life is very limited and there’s anxiety around things that aren’t going to happen as they expected

Health Management Support

Health management support was described as communication and behaviors that support getting through crisis situations, fostering medication adherence, and promoting healthy living and wellness behaviors. Three sub-categories emerged from the data: a) crisis support, b) medication adherence support, and c) wellness support. Crisis support involves support that occurs in less predictable contexts to reduce the negative stress associated with emergency and psychiatric crises situations. Crisis support includes providing information and records to treatment providers during a mental health crisis, locating family members when in a suspected crisis, and advocating for family members during a crisis (e.g., insuring housing remains secured, providing important information, etc.). For example, participants described the following:

I really feel that I’ve kept him alive by always tracking him down and providing, since I know all of my rights, information to the treatment provider every single time he’s brought to psych emergency, to the point of where mobile crisis knows me by first name and the [name of station omitted] police station has me on speed dial.

When a person comes in, is brought in by the police, or goes to the hospital and my son’s been hospitalized 120 days this year at [name of hospital omitted], they do not keep the records, so you have to. I have the short form. I have the long form. I hand deliver the history

I basically became a social worker so the police were called, she was hospitalized. There was damage, she almost lost her housing. Child Protective Services were called. There was just a lot to do and um yeah it really gave me insight to somebody who doesn’t have support because I was her advocate

I’ve had more than nine Tarasoff warnings but they keep letting him out of the hospital after a week or two weeks and to be supportive of him, he calls me and you know I think I help him by not allowing him to be homeless [after hospital discharge]

we’ve had a history of her leaving the house and on one occasion hitchhiking and fortunately we were able to find her.

Medication adherence support emerged as another sub-category of health management support, and was described as an essential type of support to protect their loved one against symptom exacerbation and to promote optimal functioning. For example, one participant stated:

the things that I consider most important for providing support so my sister can manage in the best way her life and health issue is to make sure that she’s complying with her medication regimen and to make sure that the rest of the symptoms in her life do not drive her to a place where she feels like the side effects from the medications are so unbearable

Medication adherence support was described as a constant monitoring of their loved one’s medication regimen and enacting a delicate balance between hands-off adherence support that promotes medication autonomy and more hands-on support to insure adherence. For example, participants described:

all I was saying was…don’t just be completely absent from his life and also to be able to have an intervention and to say I think you need to take medication but also know your own boundaries so it’s always that kind of give and take. You can’t be there all the time but you don’t have to never be there so.

You know, I don’t know, he could probably do that [take medications] on his own but I think it, I don’t know. I’d like to be able to have the process be his, but I know that it can’t be totally his.

Sometimes it’s a little bit of pressure and when I see that it works, but sometimes I just don’t say anything, I can’t say anything, even, you know not mentioning anything about medication, she, when we have, you know spent like two weeks of daily conversation about it…

Family members described more hands-off adherence support to include providing education about side effects and the potential consequences of non-adherence. For example:

I say things like, yea I know that those side effects make you cloudy and you know those side effects are awful. You know he would start and he would say something like, you know, but then you find that you end up going to the hospital and it sucks in the hospital

I said now you really know, you’re understanding more that these medications are really important for your body and you’re picking little things out here and there.

Family members also described hands-on adherence support to include such approached as administering medications, enacting behavioral contingencies or exerting pressure. For example:

…that five to ten minutes that we do it every night when I give it to him, has been uh, like a, like a chat you know. I don’t even, at this point and we’re lucky because he’s been taking it consistently now so it’s been easier

It definitely came to me to administer the medication. I’m the only one who can do it at this point without him kind of reacting

we eventually made a deal that for him to live in the house, he had to take medication and this was without him having to acknowledge that he’s sick, it was just the deal, straight up deal and it was like well how are we going to make sure he takes it

I mean there is saying take your medication. There are times where we use force, I mean we have to. I’m not there to put her meds in her drink, but I talk with my parents and sometimes we have to use methods that I wouldn’t be proud of making but they get the results

Finally, family members described the silent context of adherence support:

but you know, we don’t talk about it. I just hand it to him and we talk about other stuff while he’s taking it

she knows and I that it’s the elephant in the room and nobody talks about it so, she’s you know become so conscious about it that, you don’t even have to talk about it, she knows, it’s there and sometimes, at some point she will succumb, so. I, you know. I mean there are times where it’s conversation at times where you hope she will…

so for us to um, for me to talk about it, he’ll go oh no, it’s okay, well, but then he came to me like a day later and said, “mom, I haven’t taken my medication for a couple of days” and I said “that’s not good but I’m glad you said something, you would never have said anything” so he got himself back on you know and um, he still, he had to sleep for a while so he knows

Wellness support was described as encouraging and participating with a loved one in physical activity, promoting stress reduction activities (e.g., yoga, meditation) and supporting accessing the outdoors and nature. For example:

The idea of just getting my daughter to move physically, just to experience what is like to feel good inside your body, however you might do that like yoga or meditation or just enjoy being outdoors too. I think a lot of people with mental illness they just isolate and stay inside and the computer is good and bad and so more as you said social activities and more movement of any kind”.

I’m always trying to get her to walk with me along the ocean or exercise. She’s overweight and she struggles with that

Day-to-Day Living support

Day-to-day living support was described as assisting loved ones with SMI with their daily living needs related to housing, financial issues, paperwork, appointment support and regular check-in support. Four sub-categories of day-to-day living support emerged from the data: a) housing support, b) financial support, c) paperwork and appointment support, and d) check-in support. Housing support refers to direct support or advocacy related to insuring their loved one has a place to live by providing their own home and/or advocating for keeping their home during unstable periods. For example:

if he’s not living with me, he’s supposed to live on $830 per month for food, clothing, and shelter, how is that at all possible in [name of place omitted]? It is not possible and I guess if you don’t have a family with means or a family, that’s willing to let them live at home, they are out on the street and there is no place that you can live

I had to help advocate and get her house cleaned, she had broken furniture so we replaced that and we had to advocate for her to not get thrown out of her housing complex

I’ve had more than nine Tarasoff warnings but they keep letting him out of the hospital after a week or two weeks and to be supportive of him, he calls me and you know I think I help him by not allowing him to be homeless [after hospital discharge

Financial support refers to assisting loved ones with SMI to pay for basic living essentials (e.g., food, utilities, rent, gas, etc.) through the provision of money and/or through money management or financial capacity support. Family members described adjusting their financial support to better meet their loved one’s needs. For example:

Well I used to throw a lot of money at her. And I’m not well off at all and I just learned that she doesn’t (spend the money well) and that’s why I buy the groceries and every once in a while I’ll pay a PG&E (gas or electric) bill or something like that. I mean she gets money for her birthday or Christmas from myself and other relatives and she doesn’t manage it well or benefits her kids so I stopped doing that

so when she goes to therapy and we have an agreement where I will pay for her. I will give her financial support like I will give her money when she tells me that she’s gone and therapy groups once a week and she has a therapist through Kaiser and I will pay her money when she goes and we’ve worked that out so that I think we’re both okay with it

I don’t know how we arrived at it, it took a long time to not rescue, you know pay off the credit card bill when there was all this impulsive buying, you know not to rescue, but having predictable amount of money for food and gas, once we got a structure for the financial support it became really predictable and we started defining and helping her create a budget for herself

He gets a certain amount for SSDI and we charge him rent, but the rent goes into a bank account. Our thought process is that eventually he will become independent. He pays for his car and gas and your know dental appointments and whatever he needs to pay for it, but if he wants certain things then he will go out and we will pay for these food but there is an expectation that he will make dinner for us or we make dinner together

My son now lives at home so he gets $600 per month and that is you know well yes, so now he gets’ $600 a month to do with whatever so I have to try to make him pay for some of his food and things like that

One mother described getting help from other family members to assist in her daughter’s expenses:

she kind of just makes it and they run out of food at the end of the month, so I thought okay, if I call grandma and my ex and everybody, we can gather some money together and I can bring groceries once per month at the end of the month. I drive to [name of place omitted] deliver groceries and visit. …the house gets cleaned, the laundry gets done

Paperwork and appointment support refer to assisting loved ones with SMI in completing paperwork and managing the bureaucracy associated with accessing services and resources, and assisting in scheduling and attending appointments. One participant described the arduous process of getting their sister to an important appointment:

A couple of weeks ago she had to, we had to renew her Medical and she had to be there and this was the second appointment and she, right now her sleeping schedule is, she’s sleeping during the day and awake throughout the night so it was really a miracle for her to make this 4 o’clock appointment. It took us maybe two hours to get her out of the house and her walking up the stairs, coming back down, changing her mind, her clothes, doing other things and just saying she’s not going at all, to okay and agreeing

One participant described paperwork support for her daughter by completing important applications and paperwork related to her grandchildren’s needs:

I still do this because she hasn’t been able to do it. I do all the research and apply for all the scholarships for the grandchildren to have summer activities and other activities so I get them into camp and art class and all that stuff

Check-in support was described as regular contact via phone, internet or face-to-face interaction. The method for regular check-in support depended upon whether the individual with the SMI lived with the family, and varied from short-exchanges to long conversations. Check-in support was described by family members as support intended to reduce social isolation, support illness and medication management and increase social connection, particularly to fill the void associated with limited friendships. For example, participants stated:

We see each other every day on the computer through Skype. Support is giving her…sometimes it varies from a simple just staying with her online saying nothing and just talking about the weather and I can feel that there is a need to stay online just making up things to say without having a very concrete subject to talk about. Even if I have kids in the background and I have to stay there because I know she needs somebody to talk to and this somebody can’t be just anybody. It can only be me or another couple of people as it’s not easy for her to create new friendships

Checking in even though you know they are fine and they probably don’t have much to say, but you know just saying hey what’s going on?

I know she needs someone to talk to and this somebody cannot be anybody, it can only be me or another couple of people so it’s not easy for her to create new friendships. I’m one of these choices so I have to be there just for simple conversation and other types of support have been professionally-oriented. I mean I’ve helped her feel a bit more confident

Discussion

Guided by two overarching typologies of social support that have been consistently identified as the most salient and encompassing types of social support – emotional and instrumental support (Declercq et al., 2007; Shakespeare-Finch & Obst, 2011), our study revealed that family members provide five types SMI-specific supports for their loved ones with SMI including person-centered support, autonomy support, community participation support, health management support and day-to-day living support. While our results share some broad-based conceptual underpinnings with traditional models of emotional and instrumental support, our support categories are conceptually distinct from these constructs, representing supports that are uniquely tied to the stressors associated with living with an SMI. A discussion of these five support categories are discussed below.

Person-Centered Support

Family members described person-centered support as clear, concise and emotionally non-reactive communication that relays an acceptance and valuing of the individual, their symptoms, and their mental illness; an interest, curiosity, and understanding of the individual’s unique experiences; legitimization of the individual’s feelings and perspectives; and encouragement to explore, understand and contextualize their feelings. Person-centered support is aligned with the traditional emotional support construct; however, person-centered support is unique and distinct from emotional support through its focus on supporting the exploration, acceptance, and valuing a loved one’s interests, desires, and goals – areas that have historically been marginalized or denied for the SMI community, but are central to autonomy and self-directed recovery. Indeed, for recovery to progress, persons with SMI must be supported in strengthening their personhood through acceptance of feelings, thoughts, desires, interests and personally meaningful goals. It is this foundation that will advance self-directed recovery and the motivation to achieve meaningful goals.

Our finding is well aligned with the message perception paradigm developed by communication scholars who posit that social support entails highly person-centered communication that is evaluatively neutral, explores, acknowledges and legitimizes the support receiver’s feelings, allows for the expression of negative emotions, and avoids expressions of sympathy (Burleson et al.,1994; Jones & Burleson, 1997). Scholars also assert that supportive communication is characterized by non-content features such as length and clarity (Feng, 2009; Neff & Karney, 2005). Within the context of SMI, communication that is short in length or chunked may be less taxing for those experiencing a cognitive impairment. Research supports the benefits of person-centered communication, with numerous message perception studies finding that people evaluate high person-centered messages as more appropriate, sensitive, effective, and helpful than messages communicating lower levels of person centeredness (Burleson, 2003; High & Dillard, 2012; Jones, 2004; Spottswood, Walther, Holmstrom, & Ellison, 2013). We content that person-centered support likely works in tandem with other acts of support (e.g., such as driving a person with an SMI to an appointment, assisting with daily living activities, medication adherence support) to enhance positive outcomes. Indeed, supportive behaviors are likely helpful only to the extent that those receiving the support feel valued, accepted and heard. Our assertion is consistent with the larger cross-disciplinary emotional support literature that suggests emotional support is considered one of the most desired types of social support (Burleson, 2003).

Autonomy Support

Family members described autonomy support as communication and behaviors that convey respect and encouragement of personal choice, decision-making and actions that are aligned with the individual’s desires, interests and goals. Family members noted that autonomy support required them to relinquish rescuing their loved one from difficult situations. Our findings are aligned with Deci and colleagues’ conceptualization of autonomy support which posits that autonomy support promotes decisions and actions congruent with an individual’s values, beliefs and interests; nurtures and strengthens a person’s motivational resources by promoting personal choice, initiative and decision-making; and is devoid of external, social pressures (Deci & Ryan, 1985; Reeve, Deci, & Ryan, 2004). Scholars also note that autonomy support enhances an individual’s ability to engage in an initially uninteresting activity or goal and persist in achieving goals by acknowledging the support receiver’s feelings towards the activities necessary to achieve the goals, encouraging initiative towards these activities, and communicating confidence in the individual’s ability to meet goals (Gagné, 2003; Williams, Gagne, Ryan, & Deci, 2002). Autonomy support is particularly salient to persons with SMI as difficulties with motivation, decision-making and engaging in self-directed activities are commonly observed among those with SMI (Fitzgerald et al., 2015). According to Gagné and colleagues (2007), individuals in recovery desire autonomy and choice, yet many of the environments and relationships to which persons with SMI interact within, promote dependency and apathy, contributing to difficulties with motivation and persistence towards changing a behavior, achieving a goal, or engaging in an activity (Gonzales, Davidoff, Nadal & Yanos, 2015; Manthey, Jackson, & Evans-Brown, 2011). Our findings suggest that autonomy support may sustain motivation towards recovery goals by encouraging and valuing the individual’s perspective, supporting their initiatives, offering service delivery choices, providing information, and minimizing external pressure and control (Fitzgerald et al., 2015; Williams, Lynch, McGregor, et al., 2006).

Research also supports the benefits of autonomy support. For example, studies show that supportive approaches promoting autonomy and choice were highly valued and contributed positively to recovery among persons with SMI (Gonzales & Andvig, 2015). Studies also show that autonomy support increases activity engagement (Deci, Eghrari, Patrick, & Leone, 1994), motivation and health behaviors (Williams, Cox, Kouides, et al., 1999), weight loss (Williams, Grow, Freedman, Ryan, & Deci, 1996), medication adherence (Williams, Rodin, Ryan, Grolnick, & Deci, 1998), competence and autonomy (Vallerand, Fortier & Guay, 1997), work satisfaction (Deci, Connell & Ryan, 1989), and employment outcomes (Rhoades, Eisenberger & Armeli, 2001). Studies also find that autonomy support is positively linked to vocational recovery-oriented variables among persons with disabilities and persons with SMI (Fitzgerald, Chan, Deiches, et al., 2015; Iwanaga, Umucu, Wu, et al., 2018; Tansey, Iwanaga, Bezyak & Ditchman, 2017).

Community Participation Support

Community participation support was described as initiating and planning activities aligned with their loved one’s interests, offering choices, accompanying a loved one with SMI into the community, providing instrumental support for community participation (e.g., transportation, money, etc.), and including the loved one with SMI in family member community engagements. Aligned with Burns-Lynch et al.’s (2016) conceptualization of community participation, namely, individual actions and choices that lead to engaging in valued activities and roles in the community, this support category extends beyond finding and accessing community activities to include communication and behaviors that support personal choice, decision-making and engagement in activities meaningful to the individual. Simply put, community participation support encourages a loved one to choose what, when, how, and with whom participation occurs. Our finding is consistent with research showing community participation to have a considerably stronger relationship with recovery and quality of life when participation occurred in activities or roles salient to the individual (Burns-Lynch et al., 2016). Family members also expressed the essential nature of community participation support in addressing their loved ones’ lack of social network and community engagements, and described a scarcity of available community participation resources. These experiences are consistent with studies showing persons with SMI report high report levels of social isolation and limited community engagement (Badger et al., 2003; Pinfold, Rowe, Hatfield, et al. 2002; Townley, Kloos, & Wright, 2009) and experience disproportionately fewer opportunities for meaningful engagements in settings of their choosing (Salzer, Baron, Menkir, & Breen, 2014). In fact, studies show that individuals with SMI spend the majority of their time engaged in personal care (e.g., sleeping, eating) or passive leisure activities (e.g., TV; Shimitras, Fossey, & Harvey, 2003) and have on average, two to three sources of social support (Chronister, Chou, Kwan, Lawton & Silver, 2015).

Health Management Support

Health management support was described as a mixture of instrumental and emotional supports provided across the continuum of recovery – from crisis and stabilization to participation and wellness – to support quality, recovery-oriented care during crisis situations, symptom management during periods of stabilization and setbacks, and health promotion and wellness behaviors throughout recovery. Health management support is provided directly to, and/or on behalf of a loved one with SMI, and encompasses three sub-categories including a) crisis support, b) medication adherence support, and c) wellness support. Crisis support was described as specific communication and behaviors during a psychiatric crisis involving hospitalization, psychiatric emergency services, law enforcement and housing instability. Specifically, crisis support includes actively locating a loved one who is in crisis, collaborating (contacting, interacting and providing information) with hospital and other emergency service providers, housing programs or law enforcement personnel during emergency situations, and advocating for a loved one’s legal rights and quality of care during a crisis (e.g., insuring recovery-oriented, trauma-informed, individualized treatment, protecting client against the use of unnecessary restraints, inappropriate treatment by law enforcement, insuring housing remains secured, etc.). Crisis support is particularly important given that the quality of crisis intervention is often constrained by poor cross-disciplinary communication, incomplete or inaccessible records/information, and care that is split off from best practices for those living with SMI such psychosocial interventions, family education and supported employment (Mueser, Meyers, Penn, et al., 2006). Family members described often being the only source of current and/or valid information during a crisis situation (e.g., medication history, symptoms, history, healthcare providers, etc.), the sole advocate for recovery and trauma-informed crisis intervention, and quite possibly the most knowledgeable about the mental healthcare laws and practices that govern crisis intervention. Given that person’s with SMI are at higher risk for inadequate mental health services and trauma during psychiatric treatment (Frueh, Cousins, Hiers, et al., 2002), family member crisis support is particularly important to reducing the negative impact of poor health and mental health care during crisis.

Medication adherence support was described as another element of health management support. Most pronouncedly, this type of support was described as continually monitoring a loved one’s medication regimen – from afar or up close, and maintaining a delicate balance between hands-off approaches that support autonomy and hands-on approaches to facilitate adherence. ‘Hands-off adherence supports described included reminding a loved one of the negative consequences of non-adherence, being attentive to signs and symptoms of non-adherence, and gentle inquiries or reminders about medication– with latitude for choice and decision-making. Hands-on, or more direct adherence supports described included medication administration, developing behavioral contingencies, and using coercive methods, noted by one participant as using “force.” Certainly, the degree to which these types actions are supportive and beneficial rest on a myriad of factors (e.g., phase of recovery, level of cognitive functioning, attitude towards adherence, and family functioning), and the risks for a support “mismatch” is likely to occur if the type of support does not align with a loved one’s phase of recovery or their reasons for nonadherence. For example, a hands-off approach such as observing from afar or offering education about side effects may not be supportive if the individual is unintentionally non-adherent (practical problems or impairments that interfere with taking medication) and experiencing an earlier phase of recovery (e.g., Young & Ensing, 1999). Indeed, nearly a third of persons with SMI forget to take their medication (Bogart, Wong, Lewis, et al., 2014) due to cognitive impairments impacting memory, learning, and executive functioning (Velligan et al., 2017). Similarly, a hands-on approach such as implementing behavioral contingencies or using verbal or behavioral pressure may not be supportive if the person is intentionally nonadherent (conscious decision to stop or take less medication). In fact, it may be experienced as a negative exchange (e.g., nagging, coercive, and not person-centered), which in turn, may contribute to continued nonadherence, family conflict and worsening of symptoms (Haddad, Brain & Scott, 2014). Given that studies report that upwards of 50% of persons with SMI intentionally skip their medications or take a smaller dose than prescribed (Bogart, Wong, Lewis, et al., 2014), family members are more likely to avoid a support mismatch by considering the reason for nonadherence and recovery phase when making decisions with their loved one about who, what, when, where and how adherence supports are provided.

Behavioral contingencies and more coercive approaches (e.g., verbal or behavioral pressure) are more likely to occur during early phases of recovery and may be deemed supportive and beneficial by the individual if there is a shared agreement and non-adherence is unintentional. At the same time, these types of approaches must be moderated by opportunities for choice and decision-making along the way (e.g. explaining the benefits of medication during administration, reducing behavioral contingencies as adherence increases) to facilitate autonomy and more advanced recovery. It is quite possible that these approaches can promote dependency and conflict versus autonomy and adherence, particularly if there is not a shared agreement or reasons for non-adherence are misunderstood. Irrespective of type and level of support provided, family members expressed maintaining a keen awareness of their loved ones’ medication regimen and continually thinking about how and when to approach medication-related issues with their loved one. Simply put, family medication issues are central to their loved one and their family’s daily experience. While central, however, family members described the tense nature of the topic, with one participant referring to medication as the “elephant in the room,” another participant describing how their family did not use the word “medication” around their loved one because of its triggering effect, and yet a third participant described how negative attitudes towards medication by other family members hindered adherence by their loved one with SMI. These experiences reveal the communication barriers associated with psychotropic medication, the impact medications have on family functioning, and the challenges family members face when trying to support autonomy while at the same time trying to insure adherence.

Wellness support encompasses encouraging and participating with their loved one in physical activity, promoting stress reduction activities (e.g., yoga, meditation) and supporting going outdoors and into nature. Family members expressed recognizing the importance of considering their loved one’s health beyond that associated with their SMI, and trying to enact wellness supports in creative ways in spite of limited resources. We conclude that health promotion and wellness is yet another salient aspect of recovery where the support and intervention fall primarily on family members. Research is replete with evidence pointing to high rates of preventable comorbidities and early mortality rates among the SMI community (e.g., Bartlem, Bowman, Bailey, et al., 2015; Glasheen, Hedden, Forman-Hoffman & Colpe, 2014), yet lifestyle choices and behavioral changes are often constrained by inadequate healthcare, stigma, side effects, and functional restrictions (Leventhal, Rabin, Leventhal, & Burns, 2001). Moreover, the majority of health promotion interventions for those with SMI are provided through group psychoeducational interventions located in inpatient or outpatient healthcare settings (Centorrino, Wurtman, Duca, et al., 2006; Kwon, Choi, Bahk et al., 2006; Tweedell, Forchuk, Jewell & Steinnagel, 2004), despite the evidence that suggests individualized wellness interventions provided through natural, informal supports are desired by persons with SMI (Centorrino et al. 2006; Kwon et al. 2006) and shown to have more beneficial and long lasting effects than group approaches (e.g., Aschbrenner, Naslund, Gill, et al., 2017). Family members are likely filling an important service delivery gap that provides individualized and recovery-oriented wellness interventions for those with SMI. Healthcare providers likely need to attend more to the development of individualized and recovery-oriented health promotion plans that directly include family members in the development and execution of these plans. From this perspective, wellness support may promote positive health outcomes by directly influencing behavior change through family member modeling and active participation in healthy behaviors (e.g., going to the gym and developing healthy meals with family member) and moderate the negative impact of symptoms, isolation, and stigma on wellness behaviors.

Day-to-Day Living Support

Day-to-day living supports are, at the most basic level, safeguards that protect against the deleterious effects of poverty and stigma such as homelessness, poor housing quality and instability, and roadblocks associated with navigating and accessing healthcare and other social services. Day-to-day living supports include four main areas: a) housing supports, b) financial support, c) appointment and paperwork support, and d) check-in supports. Housing support includes the actual provision of housing during periods of homelessness, and advocacy and case management support to obtain and maintain quality, safe housing. Family members described their home as a safety net during setbacks or crises periods, advocating on behalf of their loved one with housing program staff and landlords during periods of instability, and supporting their loved one in housing tasks (e.g., paperwork, mail, paying rent, cleaning, removing garbage, etc.). Family members described housing support as an “uphill battle” due to the lack of safe, affordable and desirable housing, the unrealistic contingencies required by housing programs, and living in constant fear that their loved will lose their housing, live on the streets, or end up in a shelter or the criminal justice system. Housing support, while intermittent, was undoubtedly rooted in significant worry related to their loved one’s unmet housing needs (e.g., safe, affordable, desirable), anticipation of a housing crises, and the lack of quality and harm reduction-oriented housing programs. Our findings are squarely aligned with the robust body of research suggesting that supported housing, housing stability and housing quality contribute to an array of positive outcomes among persons with SMI including autonomy, choice, participation, reduced symptoms, reduced service use, reduced substance use, and fewer hospitalizations (Einbinder & Tull, 2005; Gulcar, Stefancic, Shin, Tsemberis & Fishcer, 2003; Siegel et al. 2006; Wright & Kloos, 2007). Indeed, a safe home provides the predictability, control and security needed to offset the stress associated with recovery setbacks, psychiatric crises or interpersonal loss (Perese, 2007), and provides a context for enacting personal interests, desires and choices – key elements of the recovery model, self-determination and community participation.

Financial support refers to monetary aid to help pay for basic living essentials (e.g., food, utilities, rent, transportation, etc.) and access to the community. Like housing support, financial support was also described as a safety net to protect their loved one against the deleterious effects of poverty and unemployment. Family members described the far-reaching effects of poverty on their loved one’s health and well-being, noting that without additional financial support, their family member would be unable to pay their rent, pay bills, buy a bus pass, purchase clothes or engage in social activities. One study found that 95% of adults with SMI reported they could not make their monthly income last through the month and more than half of individuals with SMI reported they could not access the transportation they needed (Kowalchuk, 2003), limiting their choice of housing, access to health and dental care, and their ability to socialize, shop, and participate in other community activities essential to recovery (Borg, Sells, Topor et al., 2005). Indeed, poverty and unemployment rates are alarmingly high among the SMI community, with unemployment rates estimated at 85% across the nation and monthly income levels reported to fall between $350 to $850 a month (Chronister et al., 2015) and thus family member financial support is essential to buffering the negative impact of poverty on recovery and promoting financial capacity. Financial support is particularly important to recovery, as financial capacity is considered a core element of autonomy (Marson, Sawrie, & Snyder, 2000) and community participation (Melton, Petrila, Poythress & Slobogin, 1987). Financial capacity has received minimal attention in the literature, yet it has important implications for recovery; namely, to what extent does the control held by representative payees or family members over an individual with SMI’s budget contribute to recovery, autonomy and self-determination? What is the appropriate balance for insuring a financial safety net while promoting financial capacity?

Paperwork and appointment support refer to supports that assist a loved one with completing paperwork needed to access services and resources and supports related to scheduling and attending appointments. Persons with SMI are often connected to numerous health, mental health and allied social service agencies, and navigating the paperwork and appointments within a typically large and fragmented service-delivery systems is a significant barrier to benefiting from available services (Hogan, 2003). Paperwork and appointment support have the potential to facilitate a more integrated and coordinated service delivery experience for persons with SMI, and may increase the probability that the individual will access needed services, while potentially reducing the negative impact of the stress associated with navigating these systems. At the same time, appointment and paperwork support must be moderated by opportunities for the loved one to self-direct tasks, have choices, and make decisions along the way (e.g., deciding when to schedule an appointment, choosing a provider, reviewing and completing paperwork with help) to facilitate autonomy and more advanced recovery. It is quite possible that these paperwork and appointment support can reduce choice, decision-making and self-directed behavior, particularly given the mundane and often confusing nature of these tasks. Appointment support is particularly important given the studies suggesting that healthcare appointment nonadherence is highly prevalent among those with SMI and is associated with poor health outcomes (Gunzler, Morris, Dalton et al., 2017). Appointment nonadherence is likely influenced by a myriad of personal and environmental barriers such as mental health stigma in healthcare, a weak alliance with healthcare provider and poor health and symptom management. Studies also suggest that appointment adherence is linked to an individual’s level of understanding and knowledge about their condition and to their level of self-efficacy as it relates to perceived ability to manage their condition and symptoms (Gunzler et al., 2017). These potentially modifiable factors can be addressed through appointment support that includes advocating for psychoeducation by providers and advocating for a recovery-oriented and self-determined healthcare approach. In addition, persons with SMI often have multiple comorbid health and behavioral health conditions that are often inadequately addressed; appointment support may provide an additional resource for insuring a loved one’s overall health and wellness is addressed.

Regular check-ins involve a brief, consistent (daily, weekly) exchange between the family member and their loved one, via phone, computer, or through an in-person exchange. We assert that regular check-ins are a particularly important type of daily support, that is most pronouncedly, a source of consistent social connection that can moderate the negative effects of loneliness and the gaping lack of social ties, meaningful social connections, and community participation so common among persons with SMI. Loneliness, a common experience among persons with SMI (Chou & Chronister 2012), has a significant negative impact on wellbeing, recovery, quality of life, community participation and illness management among persons with SMI (Chou & Chronister, 2012; Chronister, Chou, Fitzgerald, & Liao, 2016; Chronister, Chou, & Liao, 2013; Harvey, Brophy, Parsons, et al. 2016) and increases the risk for a wide range of health and behavioral health problems, unhealthy lifestyle behaviors, and early mortality (Cacioppo & Patrick, 2008; Griffin, 2010; Holt-Lunstad, Smith, Baker, Harris & Stephenson, 2015). Check-in support has the potential to alter an individual with SMI’s perception of their social support resources and increase the frequency of receiving social support, which in turn, has the potential to buffer the negative impact of SMI stressors and alter how they cope with stress (Clark, Myron, Stansfeld & Candy, 2008). Brief, regular check-ins can be a simple, yet powerful tool to mitigate the negative impact of daily stressors associated with SMI, while at the same time, moderating the impact of loneliness through a consistent message of being cared for, heard and valued.

Limitations

Study limitations to consider in the interpretation of our findings include the following. First, the study cannot be generalized to the larger population of family members providing support to an individual with SMI given the qualitative nature of our study design. Second, the purposive sampling method precluded participation of family members who were not members of NAMI or those who were unable to allocate time and resources for study participation. Third, our participants were primarily white, educated individuals who identified as females, and who were predominantly mothers or sisters of a loved one with SMI. It is possible that family or friends who support a person with SMI who identify as another gender may provide different types of social supports. Fourth, the absence of member checking is a limitation; however, in vivo member checks occurred during the focus groups by way of the moderator checking-in with participants during the focus groups to ensure comments were accurately understood by the moderator. Fifth, while the inclusion of an external auditor is a strength, this does not ensure confirmability of the results given that the auditor was a member of the research team and not a family member. Sixth, our findings may be constrained by not being able to guarantee confidentiality among the group members. While we encouraged group members to keep shared information confidential, we could not prevent participants from sharing outside the group, which may have prevented some participants from disclosing sensitive information. Finally, our study is limited to describing family member perceived supports for persons with SMI and did not inquire about negative social exchanges or examine data from this perspective. Given that eight participants chose “negative” on the demographic survey to describe their relationship with their loved one, it is possible that the perceived nature of the family member and their loved one’s relationship influenced their perception of the type of supports needed and the process used to provide supports. It is also important to acknowledge that the types of supports described by family members may not be perceived or received as helpful by a loved one with SMI. Our findings are limited solely to support perceptions and we cannot state these types of supports improve outcomes or are perceived as beneficial to those with SMI given the nature of our study. Indeed, actions and communication intended to be supportive may not be perceived or received as helpful, and can in fact be harmful (e.g., Newsom, Nishishiba, Morgan & Rook, 2003; Newsom, Rook, Nishishiba, Sorkin & Mahan, 2005). While social support is most often touted as beneficial, social support is a complex, multivariate interpersonal process influenced by numerous personal and contextual factors.

Conclusion

Social support continues to be hailed as an important, if not essential, psychosocial resources for those with SMI. Yet, research in this area lags behind the scientific advancements in social support achieved with other chronic illness and disability communities (e.g., diabetes, cancer, multiple sclerosis). SMI scholars have steadfastly relied on a conceptual framework of social support developed for those who do not experience the daily personal and environmental barriers associated with SMI. Our findings address this gap by describing five SMI-specific types of family support categories grounded in the voices of those caring for a loved one with SMI. Family members described SMI-specific types of emotional support including person-centered support and autonomy support – both of which enact essential ingredients of recovery, self-determination, personal choice and decision-making. In addition, family members described SMI-specific types of instrumental supports including community participation support, health management support, and day-to-day living supports – all of which include supports designed to mitigate the chronic stress and daily obstacles associated with SMI, while promoting recovery and self-determination. Our findings re-affirm the importance of family support for persons with SMI and advance the social support and SMI research to allow for further development in the area of SMI-specific social support assessment and intervention.

Impact and Implications.

• Findings describe five family support categories that advance our understanding of SMI-specific types of social supports

• Findings permit researchers to develop a more valid and reliable measure of social support thereby allowing researchers to investigate which type of SMI support moderates which type of SMI-stressor (e.g., poverty, isolation, stigma, symptoms)

• Findings advance the growing body social support research that identifies population-specific types of social support salient to specific chronic health conditions and disabilities (e.g., diabetes, cancer, etc.).