Abstract
Objectives:
With support from others, individuals with depression can build skills and implement lifestyle changes that help them manage their illness. The objective of the current study was to understand how the CarePartners for Depression Program, a randomized clinical trial aimed at enhancing the role of caregivers in the management of depression, improved communication and shared understandings of depression among individuals with depression and their close others.
Methods:
We conducted in-depth, semi-structured interviews with individuals with depression and their caregivers who participated in the CarePartners program. Interviews were qualitatively coded using a thematic analytic framework.
Results:
We conducted individual interviews with 39 participants in the CarePartners program, including 18 individuals with depression, 14 out-of-home care partners, and 7 informal caregivers. Three central themes were derived from analyses: (1) The quality of interpersonal relationships influenced management of depression; (2) Having clearly defined roles for CarePartners improved communication between CarePartners and individuals with depression; and (3) Shared understanding of depression improved management of depression.
Discussion:
Our findings established the conditions under which management of depression was influenced in a dyadic intervention. Dyadic interventions may make it easier for individuals to support patients with chronic conditions by fostering communication and collaboration.
Keywords: Caregiver, depression, dyadic behavior change, qualitative research, self-management
Untreated chronic depression is the single largest contributor to disability worldwide and is a strong contributor to poor quality of life and premature mortality globally.1,2 Of the 17.7 million U.S. adults who had a major depressive episode in 2018, only 65% received guideline-concordant treatment.3 Like other mental health conditions, depression can be physically “invisible” in that its manifestation is often hidden by comorbid signs of physical breakdown.4 As such, effective treatment and management of depression, once identified, is of the utmost importance for an individual’s overall wellbeing.
Coordinated, collaborative care is an evidence-based primary care intervention for managing mild-to-moderate forms of depression.5 In collaborative care, healthcare providers from different disciplines (e.g., primary care, social work, psychiatry) collaborate amongst each other and with a patient to develop a structured care management plan.5 Yet, even when armed with a care management plan, adherence to treatment regimens remains low.6–9 One way to improve adherence is for healthcare providers to encourage patients to build skills outside of the clinic to help minimize the negative symptoms of depression.10 Building skills in managing chronic depression (e.g., consistently taking medications to treat depression, keeping track of and scheduling appointments, participating in social or physical activities) can be an effective approach for preventing depression relapse and improving quality of life.11–15
However, managing more severe forms of depression may be difficult for individuals without support from others, as depression is associated with low motivation and confidence to both build management skills and adhere to treatment regimens.16,17 In general, individuals who have caregivers are more likely to adhere to treatment plans and experience better outcomes than individuals who manage conditions on their own.18–20 Caregivers can support their loved ones with building skills and completing tangible tasks to effectively manage severe mental health conditions, including: reminding them to take their medications, scheduling appointments with specialists, providing transportation, and encouraging them to pursue positive activities such as socialization or exercise.21–23 In the same vein, intangible support from others (e.g., provision of emotional support or personal advice, bolstering self-esteem) can help individuals with severe mental health conditions to build their confidence in managing their condition.24
We know from past research that social networks, or the social relationships that impact us as individuals, play a key role in mental health.25 Further, the quality of and meaningfulness of social relationships often impact severity of depression, and the relationship between social networks and depressive symptoms is reciprocal.26 What is less known is how individuals in social networks can work together to improve communication and their collective understanding of depression as a chronic condition.
CarePartners for Depression Program
A recently completed, fully-randomized control clinical trial (ClinicalTrials.gov Identifier: NCT01834534; PI: Aikens) tested whether technology-facilitated self-management support improves depression across eight primary care clinics in rural, suburban, and urban Michigan.27 Enrolled participants were randomly assigned to either the intervention condition, where they received 12-months of weekly, fully automated interactive voice response telephone calls where they were asked to rate their pain severity and given self-management tips, or an enhanced, usual care condition, where they continued care as usual and received printed generic self-management instructions at baseline assessment. Patients’ depressive symptoms improved at both 6-months and 12-months in the intervention condition, as indicated in a 6-point reduction on total PHQ-9 total score, as compared to a 3-point reduction seen in the enhanced, usual care condition. More detailed results of this clinical program are reported by Aikens et al.27
Of note, all participants, regardless of whether they were in the intervention or usual care condition, were required to participate with a CarePartner. Individuals with depression and a noncohabitating informal caregiver (“care partner” or CP) participated in the CarePartners for Depression Program or in usual care control. During weekly telephone calls, individuals with depression reported their current mood and self-management behaviors and received tailored self-management guidance. CPs received weekly updates based on patients’ reports that included guidance on how to support self-management efforts around depression. “In-home caregivers (ICGs)” played a secondary supportive role by providing emotional and/or instrumental support to the individual with depression during the program. ICGs were generally unpaid friends or family who lived with the individual with depression. Although ICGs were not actively involved with the telephone intervention, they contributed to care by helping manage household or general care tasks, encouraging medication adherence, and keeping open communication with the individual with depression.
The purpose of the current study is to present results of an ancillary qualitative examination of individuals with depression and their caregivers who participated in the CarePartners for Depression intervention (herein referred to as the “CarePartners program”). Our objective was to understand the impact the CarePartners program had on improving communication and a shared understanding of depression among individuals with depression and their close others. While we do not assess whether these social dynamics directly impact symptoms of depression in the current study, this is a distal goal of the CarePartners program.
Methods
The current study was a qualitative descriptive study of in-depth, semi-structured interviews with individuals with depression and their caregivers who participated in the CarePartners program. We interviewed individuals with depression, their CPs, and ICGs. Individual interviews were conducted with each participant.
Recruitment and Sample
All enrolled participants who had depression (N=204) had at least moderate depressive symptoms, as determined by inclusion criteria (i.e., a clinical diagnosis of depression and at least two outpatient visits within the prior two years and a baseline Patient Health Questionnaire-9 (PHQ-9) total score ≥10).27 Individuals with depression and their CarePartners were eligible to be interviewed for the current study if they had been assigned to the intervention arm of the trial and had completed all trial activities, including a 12-month follow-up. In addition, any ICGs identified by the index participant with depression were also eligible for this study. Potential interviewees (i.e., individuals with depression, CPs, and ICGs) were recruited via phone by the study team. Interviews were conducted by phone and took 30–45 minutes to complete.
Interview Guide Development
Semi-structured interview guides were developed based on the Dyadic Health Behavior Change Model.28 This model recognizes that management of chronic illnesses is a result of both individual patient and caregiver factors (e.g., social support, self-efficacy) as well as the dynamic relationship between the two people. A key concept of this model is that each individual in a relationship is both an agent of change and a respondent to change and includes constructs such as patient activation. The interpersonal relationship between the patient and caregiver is affected by the illness, and bolstering this relationship through improving collaboration, communication, and mutuality is key to improving self-management, and consequently, clinical outcomes (p. 2, Fig. 1).28
Interview questions focused on key concepts of the Dyadic Health Behavior Change Model: interpersonal interactions between individuals with depression, CP, and ICGs; care tasks and/or responsibilities; social support; barriers and facilitators to communication; and other factors affecting depression management. The interview guides are provided in Supplemental Appendices A–C.
Data Collection
Interviews were conducted with each participant separately. Two members of the research team who were trained in qualitative research developed the interview guides (RT, TG) and trained interviewers (RR, CS). Participants completed informed consent forms as part of the parent study. Each participant received $25 upon completion of the interview. All interviews were audio recorded and reviewed by the senior author (RT) and interviewers were provided feedback on consistency and style in weekly meetings. This rigorous process ensured high fidelity with the interview guide as well as with the theoretical underpinnings of the study. Interviews were transcribed by a professional transcription service for coding and analyses. Interviewers maintained detailed notes during each interview to assist with coding and analyses.
Analytic Approach
We used a latent thematic analytic approach to analyze data in which coders used pre-existing constructs from the interview guides to begin analysis, and then engaged in iterative, inductive theme generation via latent coding (i.e., coding in which emergent patterns and meaning making beyond purely descriptive themes occurs).29 Thematic analysis is a flexible qualitative procedure in which data are gathered into themes based on an iterative coding process.30 All interview transcripts were reviewed and coded using ATLAS.ti.31
Two coders (RR and CS) analyzed transcripts using the Framework Method described by Gale and colleagues.29 First, coders took professional transcriptions of interviews and familiarized themselves with the content of transcriptions (Stages 1 and 2). Then, coders generated initial codes that addressed key topics from the interview guides (Stage 3). A codebook was generated based on this initial coding process (Stage 4). All transcripts were then coded independently by RR and CS, with differences reconciled through iterative discussion (Stage 5). Then, coders engaged in inductive coding, during which they generated a framework matrix on Excel from initial codes to identify other, emergent themes (Stages 6 and 7). Interviews continued until thematic saturation was achieved, as signified by a lack of new themes emerging after reviewing consecutive transcripts.32
Reflexivity
Although our methods are aligned with a positivist approach to analyzing qualitative data,29 we took several steps to maintain reflexivity and rigor throughout our study: In the design phase, interview guides were developed by RT and TG with feedback from experts in severe depression, intervention science, and caregiver research. This feedback was incorporated into the final versions of the interview guides. Further, individuals involved in collecting and analyzing data (RR and CS) were not involved in interview guide development. In the data collection phase, the interviewers (RR and CS) disclosed their positions on the team to interviewees. RR and CS also took field notes during the interviews to document unspoken dynamics that may impact analyses. During the data analysis phase, coders (RR and CS) coded transcripts independently and reconciled differences in codes via iterative discussion. Further, they brought results from their analyses to the larger team and engaged in critical and reflexive discourse to rectify any discrepancies or perceived issues in the data and results of analyses.
Results
Fifty-three individuals who were in the intervention arm of the CarePartners trial (25 individuals with depression, 19 CPs, and 9 ICGs) completed both follow-ups and were approached to complete an interview for the current study (See Supplemental Appendix D). Overall, 39 individual interviews were conducted, including 18 individuals with depression, 14 CPs, and 7 ICGs, indicating a 73.5% retention rate. (See Table 1).
Table 1.
Individuals, dyads, and triad interviewed (N = 39)
| One individual interviewed | I-CP Dyads (n = 10 individuals interviewed) |
I-ICG Dyads (n = 6 individuals interviewed) |
I-CP-ICG Triad (n = 3 individuals interviewed) |
||
|---|---|---|---|---|---|
| I | CP | ICG | |||
| 9 | 8 | 3 | 5 | 3 | 1 |
Note. I=Individuals with depression; CP = CarePartner; ICG = In-home caregiver
Most of the sample (~90%) was non-Hispanic White, with an average age of 49 (SD=16). In addition, most participants identified as women (n=12 individuals with depression, 67%; n=13 CPs, 93%), except for ICGs (n=3, 43%). Compared to all participants in the intervention arm of the larger trial (N=108),27 individuals with depression in this study were slightly younger (mean age of 47 in the current study vs. 48.2 in the larger trial), more balanced in terms of gender (67% women in the current study vs. 78.9% women in the larger trial), less diverse ethnically (89% non-Hispanic White in the current study vs. 73.6% non-Hispanic White in the larger trial), had higher annual household incomes (50% with annual income <15K in the current study vs. 59.3% with annual income <15K in the larger trial), and more educated (17% with a 4-year college degree in the current study vs. 12.9% with a 4-year college degree in the larger trial). Additional sociodemographic data is available Table 2.
Table 2.
Sociodemographic data of interview participants (N = 39)
| Variable | Individuals with Depression (n = 18) |
CarePartners (n = 14) |
In-Home Caregivers (n = 7) |
|||
|---|---|---|---|---|---|---|
| Mean | Range | Mean | Range | Mean | Range | |
| Age | 47 | 25–68 | 56 | 24–72 | 44 | 26–68 |
| N | % | N | % | N | % | |
| Gender | ||||||
| Women | 12 | 67 | 13 | 93 | 3 | 43 |
| Men | 6 | 33 | 1 | 7 | 4 | 57 |
| Race or Ethnicity | ||||||
| Non-Hispanic White | 16 | 89 | 12 | 86 | 7 | 100 |
| Non-Hispanic Black | 2 | 11 | 2 | 14 | 0 | 0 |
| Hispanic or Latinx | 0 | 0 | 0 | 0 | 0 | 0 |
| Income | ||||||
| Less than $15,000 | 9 | 50 | -- | -- | -- | -- |
| $15,000 to under $30,000 | 4 | 22 | -- | -- | -- | -- |
| $30,000 to under $55,000 | 4 | 22 | -- | -- | -- | -- |
| $55,000 and above | 1 | 6 | -- | -- | -- | -- |
| Education | ||||||
| High school graduate or GED | 5 | 28 | -- | -- | -- | -- |
| Some college or 2-year college degree | 10 | 56 | -- | -- | -- | -- |
| 4-year college graduate | 3 | 17 | -- | -- | -- | -- |
Three central themes were derived from analyses as integral factors in managing depression: (1) The quality of interpersonal relationships; (2) Having clearly defined roles for CarePartners improved communication; and (3) Shared understanding of depression.
Theme 1: Quality of Interpersonal Relationships
Individuals who reported having a positive and supportive relationship with their intervention partners indicated that their relationship facilitated better depression management and success with the CarePartner program. For instance, individuals and CPs who reported having positive relationships demonstrated greater ease in working through challenges during the program. One CP (Black female, age 36) explained, “I mean, we always found a solution. There was never a time I got frustrated and threw my hands up and said I’m not doing this anymore.”
Individuals who reported having positive relationships discussed that it was easy to identify when the individual with depression was starting to relapse. One individual (White female, age 69), in reference to her CP, stated, “…there are times she calls and she’ll say, ‘Okay, talk to me. Tell me what’s going on,’ that kind of thing. She knows me so well.”
CPs who reported close and positive relationships with the individual with depression felt empowered to help them with managing depression. For example, an individual with depression (White female, age 29) stated:
“They just talk to me about it. If I’m having a bad day and I feel like everybody’s against me, they tell me, no, we’ve got your back and we’re all here for you and you don’t need to feel like that and stuff like that.”
One CP (White female, age 47) explained, “I don’t think that he wanted to ask us to do stuff like that for him. He was worried. He didn’t want to impose. And so once he realized that we were willing to do it, then he was more willing to take the help.”
In contrast, individuals who reported having tenuous relationships with their intervention partners were less likely to experience success with the program. One CP (White female, age 60) described the following situation that occurred during the program:
“[They] threw me over the edge of his porch, and I probably said—and, you know, it’s been a while. My daughter was, like, 14 and she’s 40 now, soon to be. And I probably said, “You need some serious help.” And he probably told me to get screwed.”
When asked how often they discussed depression with their CP during the program, one individual with depression (White female, age 26) responded, “Never… Because they only call me when they need something… It’s always me helping them, not the other way around. It’s a one-way street. I help them and that’s it.”
Theme 2: Participating in the CarePartners Program Helped Improve Communication About Depression Management
Role legitimacy of CarePartners.
A key aspect of the CarePartner program was that it explicitly assigned roles of “CarePartners” and “in-home caregivers.” CPs reported that this role assignment gave them legitimacy, permission, and confidence to ask questions and initiate conversations. One CP (White female, age 67) said:
“Well, I think it gave me some legitimacy to ask her that. It wasn’t just her buddy saying, you know, what are you feeling deep down inside. I mean, I could say to her, you know, do you think the medication is helping, do you think this is going on because I was part of this program. … It kind of gave me some legitimacy to ask those questions.”
Individuals with depression and CPs noted that prior to their participation in the study, talking about depression was difficult due to concerns of privacy and sensitivity. However, CPs described that legitimizing their roles made these processes easier. These sentiments were also echoed across some ICGs, who stated that the program helped them feel more confident about their ability to give the individual with depression accurate information. For instance, one ICG (White female, age 26) said:
“…I know that she’s always on top of medications if she’s on any and appointments and things like that. But there would just be like random questions here and there that I wasn’t 100% sure but I wanted to make sure that I was giving accurate information if it wasn’t my personal opinion of how things were going if it was a more professional question.”
Opening a door for communication.
As part of the CarePartner program, individuals with depression were also provided guidelines on when and how to communicate with supportive others about their condition. One individual (White male, age 42) reported feeling that it was okay to talk about their depression as part of the program:
“Well, [the program] would notify her on things if I wasn’t completely letting her in on everything. So then she could be like, hey, you know, what’s going on with this or things like that.”
For several individuals with depression, full disclosure did not result from the program, but as one individual (White female, age 59) stated, “It just opened up a way for like a little door for the conversations to start.” Another individual (White male, age 29) described this process:
“Facilitating conversation or prompting conversation was helpful. You know, I didn’t get the kind of CarePartnership as I wanted, but at the same time, it did change the conversation significantly to where I do feel like now I can just say, you know, I know you’re not going to judge me harshly for saying this but this is the way I actually feel… It made it okay. It didn’t make it easier. It just made it okay to start having it.”
CPs discussed how the program enhanced relationship quality through open communication. For instance, one CP (Black female, age 72), said:
“Well, after finding out that he did have depression, you know, it was like we had more of a connection, because I have depression too, and I never discussed it with any of my brothers and sisters about my depression. But then when I found out that he suffered with it, it kind of made us be closer, you know?”
ICGs also noted that the individual with depression became more open to communicating after participating in the program. One ICG (White female, age 54) explained:
“It probably helped us talk about it more… just because it’s like everybody’s participating in it and so like he, when he was filling out papers and stuff, he would ask me questions or I would ask.”
Theme 3: Shared Understanding of Biopsychosocial Symptoms of Depression
One barrier to effective depression management prior to the CarePartner Program was a lack of shared understanding about depression between an individual with depression and their supportive others.
Recognizing depression.
Having a forum to discuss mental health helped dyads to recognize depressive symptoms. For instance, one CP (White female, age 36), said:
“The CarePartner Program] made it instead of being on the phone, it became easier for me to just go over there to physically see and look at her and talk to her. That became more important than just calling on the phone… I found out that the depression was there, how could I handle it and help her manage it, found out a few things to look for that I probably really wouldn’t have paid any attention to.”
Although ICGs were not primary participants in the CarePartner Program, their prior knowledge of the individual with depression allowed them to recognize when the individual needed help and act accordingly. For instance, one ICG (White male, age 48) said, “I can see she’ll have kind of a mood swing where she’s happy and everything and all of a sudden just she would start crying. And it goes on for a little bit and then she’s fine again.” This ICG went on to say that, upon recognizing these depressive symptoms, “I try to keep her busy so she’s not really thinking about it.” Similarly, another ICG (White male, age 54) stated, “I’d seen signs of depression because she would sit up in the bedroom here and isolate herself and not come down very much.” They went on to say that, after recognizing this behavior, they “had to encourage her to come back down where everybody is…and try to get her to be more around people instead of isolating herself too long upstairs sleeping all the time.”
Experiential knowledge.
The CarePartner program prompted participants to use their own experiences to enhance understanding of depression and treatment for depression. For instance, one CP (White male, age 64), said:
“She’s on medication for depression, and we’ve talked – because I’m on medication, but I seem to manage my depression a little bit different than she does. But we’ve talked about that, about medication and how that’s helped both of us. … We talk about it and she wants to keep taking it, so that’s a positive.”
One individual with depression (Black male, age 66) discussed how his CP’s (sister; Black female, age 72) experience with depression helped him to manage his own depression, “I think she goes through the same symptoms I do, you know, so she goes to a psychiatrist too. We trade information on what she do, I do, you know?” His CP corroborated this self-management approach (Black female, age 72):
“Well, for me, you know, like and with my brother, I think [the study] helped us to know what makes us feel the way we do, that we do have maybe the loose links and stuff, and that if we take our medication and stuff, it helps us stay balanced. I know it does [for] me… I used to have these crying spells, like, I didn’t know why. But actually I had a psychologist … and when I talked to my psychologist or psychiatrist, it made me feel better.”
Reducing stigma.
Prior to the CarePartner Program, one barrier to shared understanding of depression in dyads was stigma around mental illness. The CarePartner program helped to destigmatize depression by creating an atmosphere in which individuals could openly talk about this topic. For instance, one CP (White female, age 47) described that the program reduced stigma and fostered open conversations about depression:
“Before the program, we knew there was issues and you try and say something but you had to be careful because you didn’t want to offend or step on toes or you didn’t want to over assert yourself. But once he said that, yeah, he wanted some help with it, then it was kind of like, okay, you said you want some help with it, so we’re going to help you with it. You don’t have to feel bad about saying something.”
Going through the program also empowered individuals with depression to manage their care by reducing stigma. For instance, one individual (Black male, age 68) said:
“I’m glad I did the study because it made me more forthcoming. [My counselor] told me, “Well did you discuss this with your doctor? And how did you feel about this and that?” Because I was raised kind of sheltered, you know, and I come through the generation where you was told and not ask questions. So it really helped me… to speak up and to voice my feelings and concerns.”
Discussion
Qualitative findings from this study showed that three factors influence management of depression when considering patterns of behavior between individuals with depression and close others who participated in the CarePartners program: 1) Quality of interpersonal relationships; 2) Improved communication; and 3) Shared understanding of the biopsychosocial symptoms of depression. While our findings do not assess whether these social dynamics minimized or exacerbated symptoms of depression, they demonstrate how these dynamics played out in an intervention meant to enhance social support for individuals with depression.
Individuals with depression and their supportive others were most likely to benefit from the program if their relationships were strong prior to participating in the CarePartners program. Relationship quality has been found to be associated with depressive symptoms across diverse and international populations.33 A potential explanation for this phenomenon may be that having a good relationship established prior to completing the program reinforced positive communication patterns. Further research is needed to pinpoint what relationship quality aspects are most important in fostering relationships and effective depression management.
Structured communication was facilitated across triads by establishing role expectations. Across other studies, caregivers of individuals with depression report an abrupt shift in the relationship dynamic, with some saying that the caregiver role was unwanted and unexpected.34–36 In our study, the act of being asked to take on a CP role may have prepared close others for their responsibilities during the program. This preparation, in turn, may have positively influenced relationship outcomes.
During the program, participants were given a concrete definition of depression. In the CarePartners program, supportive others received daily automated calls with pre-determined questions for them to ask individuals about their depressive symptoms. By educating supportive others using this repetitive exercise, the ambiguity of depressive symptoms may have been reduced. Participants were also able to bring experiential knowledge to the program, encompassing personal and professional experiences. Further, reducing stigma around depression helped to facilitate communication between participants. Positive relationship development between individuals and close others can be hindered by lack of knowledge and stigma around depression.37–38 By promoting a shared understanding of depression in relationships, stigma-related self-management barriers may be avoided.
Limitations
A major limitation of our study was that all interviewees had participated in the intervention arm of the CarePartners Program, which greatly limits the generalizability of our study findings. Interviewees’ perspectives may be skewed by both their willingness to participate in the program, as well as their experience with the program. A second major limitation is that all interview data were collected upon completion of the CarePartners program. As such, we know little about how the CarePartners program influenced social dynamics of individuals who dropped out of the study prior to completion. Interviewing “non-completers” is an essential next step in understanding the full impact of the CarePartners program, as individuals who dropped out of the study prior to the interview period may have a different perspective from those who stayed in the study till its completion. A third limitation is that of potential researcher bias. We decided to take a positivist latent thematic analytic approach to analyzing interview data. While we took measures to ensure that our analyses were rigorous (e.g., engaging in reflexive, iterative discourse throughout the study), we understand that there still is potential for researchers’ preconceived biases to influence interpretation of our study findings. A fourth limitation is that interviews had to be conducted via phone, as all participants lived in a separate state from interviewers. The interviewers may have missed important visual cues of body language that may confirm or belie the spoken words. A final limitation is that, although we had initially planned to interview dyads and/or triads, our team had to conduct individual interviews to accommodate participants’ schedules. Differences in perspectives may have emerged if we had interviewed individuals together.
Conclusion
In summary, our qualitative analyses showed that the CarePartners program may have improved depression management by providing a better understanding of the quality of relationships for individuals who participated in the intervention arm, facilitating structured communication, and enhancing shared understandings about depression. Our findings must be interpreted with caution given the limited generalizability of our sample. Further, an important next step would be to interview individuals who dropped out of the CarePartners program, as their perspectives would provide a richer understanding of the true impact of the intervention on social dynamics between individuals with depression and their close others.
Practice Implications
Our findings indicate that individuals and their close others who participated in the CarePartners program benefitted from the program in that it provided a forum for structured communication and shared understandings of depression. For individuals living with depression, a dyadic behavior change intervention that targets individual change and involves close others in parallel enhances mutuality, which may positively affect their ability to manage depression. These types of interventions may make it easier for care partners to address patient limitations through communication and collaboration. Importantly, future studies should also examine the utility of the CarePartner trial or other dyadic interventions for mitigating depressive symptoms of caregivers themselves, who may be at risk for developing mental health issues in their capacity as caregivers.39
Supplementary Material
References
- 1.Whiteford H, Ferrari A, Degenhardt L. Global burden of disease studies: Implications for mental and substance use disorders. Health Affairs 2016; 35: 1114–1120. [DOI] [PubMed] [Google Scholar]
- 2.Friedrich MJ. Depression is the leading cause of disability around the world. JAMA 2017; 317: 1517. [DOI] [PubMed] [Google Scholar]
- 3.Lipari RN. Key Substance use and mental health indicators in the United States: Results from the 2018 National Survey on Drug Use and Health. 2018; 82. [Google Scholar]
- 4.Torrey EF, Miller J. The invisible plague: The rise of mental illness from 1750 to the present. Rutgers University Press, 2001. [Google Scholar]
- 5.Katon W, Unützer J, Wells K, et al. Collaborative depression care: history, evolution and ways to enhance dissemination and sustainability. Gen Hosp Psychiatry 2010; 32: 456–464. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Kales HC, Nease DE, Sirey JA, et al. Racial differences in adherence to antidepressant treatment in later life. Am J Geriatr Psychiatry 2013; 21: 999–1009. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Kales HC, Kavanagh J, Chiang C, et al. Predictors of antidepressant nonadherence among older veterans with depression. Psychiatr Serv 2016; 67: 728–734. [DOI] [PubMed] [Google Scholar]
- 8.Rossom RC, Shortreed S, Coleman KJ, et al. Antidepressant adherence across diverse populations and healthcare settings. Depress Anxiety 2016; 33: 765–774. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Samples H, Mojtabai R. Antidepressant self-discontinuation: results from the collaborative psychiatric epidemiology surveys. Psychiatr Serv 2015; 66: 455–462. [DOI] [PubMed] [Google Scholar]
- 10.van Grieken RA, Kirkenier A, Koeter M, et al. Patients’ perspective on self-management in the recovery from depression. Health Expectations 2015; 18: 1339–1348. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Barlow J, Wright C, Sheasby J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 2002; 48: 177–187. [DOI] [PubMed] [Google Scholar]
- 12.Basu R, Ory MG, Towne SDJ, et al. Cost-effectiveness of the chronic disease self-management program: implications for community-based organizations. Front Public Health; 3. Epub ahead of print 2015. doi. 10.3389/fpubh.2015.00027. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Musekamp G, Bengel J, Schuler M, et al. Improved self-management skills predict improvements in quality of life and depression in patients with chronic disorders. Patient Educ Couns 2016; 99: 1355–1361. [DOI] [PubMed] [Google Scholar]
- 14.Musekamp G, Schuler M, Seekatz B, et al. Does improvement in self-management skills predict improvement in quality of life and depressive symptoms? A prospective study in patients with heart failure up to one year after self-management education. BMC Cardiovasc Disord 2017; 17: 51. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Wang J, Wu X, Lai W, et al. Prevalence of depression and depressive symptoms among outpatients: a systematic review and meta-analysis. BMJ Open 2017; 7: e017173. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Janevic MR, Rosland A-M, Wiitala W, et al. Providing support to relatives and friends managing both chronic physical illness and depression: The views of a national sample of U.S. adults. Patient Educ Couns 2012; 89: 191–198. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Teo AR. Social isolation associated with depression: A case report of hikikomori. Int J Soc Psychiatry 2013; 59: 339–341. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Bouldin ED, Trivedi RB, Reiber GE, et al. Associations between having an informal caregiver, social support, and self-care among low-income adults with poorly controlled diabetes. Chronic Illn 2017; 13: 239–250. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Oh H, Ell K. Social support, a mediator in collaborative depression care for cancer patients. Res Soc Work Pract 2015; 25: 229–239. [Google Scholar]
- 20.Tovar E, Rayens MK, Gokun Y, et al. Mediators of adherence among adults with comorbid diabetes and depression: The role of self-efficacy and social support. J Health Psychol 2015; 20: 1405–1415. [DOI] [PubMed] [Google Scholar]
- 21.Brain C, Kymes S, DiBenedetti DB, et al. Experiences, attitudes, and perceptions of caregivers of individuals with treatment-resistant schizophrenia: a qualitative study. BMC Psychiatry 2018; 18: 253. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Crowe A, Lyness KP. Family functioning, coping, and distress in families with serious mental illness. Fam J 2014; 22: 186–197. [Google Scholar]
- 23.Lee AA, Aikens JE, Janevic MR, et al. Functional support and burden among out-of-home supporters of heart failure patients with and without depression. Health Psychol 2020; 39: 29–36. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Wang J, Mann F, Lloyd-Evans B, et al. Associations between loneliness and perceived social support and outcomes of mental health problems: A systematic review. BMC Psychiatry 2018; 18: 156. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Cornwell B, Laumann EO. The health benefits of network growth: new evidence from a national survey of older adults. Soc Sci Med 2015; 125: 94–106. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Reynolds RM, Meng J, Dorrance Hall E. Multilayered social dynamics and depression among older adults: a 10-year cross-lagged analysis. Psychol Aging 2020; 35: 948–962. [DOI] [PubMed] [Google Scholar]
- 27.Aikens J, Valenstein M, Plegue M, et al. Technology-facilitated depression self-management linked with lay supporters and primary care clinics: Randomized controlled trial in a low-income sample. Telemed E Health; 28: 399–406. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Trivedi R, Slightam C, Fan VS, et al. A couples’ based self-management program for heart failure: results of a feasibility study. Front Public Health; 4. Epub ahead of print 29 August 2016. DOI: 10.3389/fpubh.2016.00171. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Gale NK, Heath G, Cameron E, et al. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013; 13: 117. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101. [Google Scholar]
- 31.Muhr T. ATLAS.ti™ 5: The Knowledge Workbench. 1997. Berlin: Scientific Software. [Google Scholar]
- 32.Hennink MM, Kaiser BN, Marconi VC. Code saturation versus meaning saturation: how many interviews are enough? Qualitative Health Res 2017; 27: 591–608. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Teo AR, Choi H, Valenstein M. Social relationships and depression: Ten-year follow-up from a nationally representative study. PLoS One 2013; 8: e62396. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Camilleri I, Ward M, Scerri J. Existing but not living: Experiences of long-term caregivers of individuals with unipolar depression. J Psychosoc Nurs Ment Health Serv 2017; 55: 16–21. [DOI] [PubMed] [Google Scholar]
- 35.Harris TJR, Pistrang N, Barker C. Couples’ experiences of the support process in depression: A phenomenological analysis. Psychol Psychother Theory Res Pract 2006; 79: 1–21. [DOI] [PubMed] [Google Scholar]
- 36.Skundberg-Kletthagen H, Wangensteen S, Hall-Lord ML, et al. Relatives of patients with depression: experiences of everyday life. Scand J Caring Sci 2014; 28: 564–571. [DOI] [PubMed] [Google Scholar]
- 37.Corrigan PW, Nieweglowski K, Sayer J. Self-stigma and the mediating impact of the “why try” effect on depression. J Community Psychol 2019; 47: 698–705. [DOI] [PubMed] [Google Scholar]
- 38.Griffiths KM, Crisp DA, Barney L, et al. Seeking help for depression from family and friends: A qualitative analysis of perceived advantages and disadvantages. BMC Psychiatry 2011; 11: 196. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.del-Pino-Casado R, Rodríguez Cardosa M, López-Martínez C, et al. The association between subjective caregiver burden and depressive symptoms in carers of older relatives: A systematic review and meta-analysis. PLOS ONE 2019; 14(5): e0217648. [DOI] [PMC free article] [PubMed] [Google Scholar]
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