Abstract
Older adults who experience challenges related to mental health are unlikely to seek professional help. The voices of older adults who have navigated through mental health issues and systems of care to arrive at psychological treatment are less well understood. We conducted individual interviews with 15 adults aged 61 to 86 who sought psychological treatment. Interviews were audio-recorded, transcribed, and analyzed using narrative methods. We identified several main storylines that describe the meaning-making and treatment-seeking journeys of older adults: resistance to being labeled with mental health problems (telling stories of resistance, defining mental health issues in mysterious and uncontrollable terms, and experiencing internal role conflict); muddling through the help-seeking process (manifestations of chaos and system-level barriers); and emotional reactions to psychological treatment (hope, fear, and mistrust). Findings add to the literature base in the area of narrative gerontology, and highlight the complex experiences that older adults face when seeking psychological treatment.
Keywords
Older adults can experience prevalent, complex, and severe mental health issues, yet are especially unlikely to seek professional help in comparison to their younger counterparts (e.g., Byers et al., 2012; Mackenzie et al., 2012; Mosier et al., 2010; Reynolds et al., 2015). In addition to high rates of past-year anxiety (2.5%–11.4%) and mood disorders (3.0%–6.8%) (Reynolds et al., 2015; Scott et al., 2010), approximately one in five older adults report caregiver stress (Statistics Canada, 2012), which can lead to elevated rates of anxiety (55% in caregiver samples) and depression (20% in caregiver samples: Pinquart & Sörensen, 2003; Vitaliano et al., 2003). Yet only 30% of older adults with clinically diagnosed mental disorders utilize mental health services (Byers et al., 2012). For those who have accessed such services, most are treated by their primary care physician (e.g., Bogner et al., 2009; Cairney et al., 2010; Han et al., 2011). Unfortunately, anxiety, low mood, and caregiver stress are often undetected in primary care, making pathways to treatment difficult (Park & Unützer, 2011; Unützer, 2002). Older caregivers are even less likely to see professional help for mental health (in comparison to rates of help-seeking for general older adult populations), and more research is needed in this area (Lim et al., 2012).
Although a growing body of literature has examined the prevalence estimates of mental health issues and mental health service use among older adults, the experiences of older adults who seek psychological treatment are less well understood. As such, narrative analysis exploring older adults’ unique experiences with this process, as well as the meaning they attribute to their experiences, is vital. Such knowledge can help us better understand the processes that may underlie older adults’ low rates of mental health service use.
Health Care Treatment Decision Making
Research examining how individuals make decisions concerning treatment for health problems can enhance our understanding of treatment-seeking experiences. The past two decades have demonstrated gradual shifts away from a paternalistic approach to medical decision making (Kon, 2010) toward greater emphasis, in practice and policy, on patient autonomy and shared decision-making models (Hack et al., 2006). Paternalistic decision-making models emphasize a system-induced passivity that can lead patients to take a less active role in their treatment decision making. In shared responsibility models, treatment providers and patients ideally are working together, sharing information, and reaching a mutually agreed-upon treatment decision. However, the use of this approach depends on physician and patient preferences, and both may have varying levels of comfort with this model (Kon, 2010). Furthermore, the established power imbalance between medical professionals and patients may decrease the likelihood that patients feel able to participate in decisions. However, some research suggests that the majority of older adults prefer to be involved in their health care treatment decision making (Chiu et al., 2016; O’Neal et al., 2008).
Treatment-Seeking Experiences of Older Adults With Mental Health Issues
A small but growing body of research has also explored processes through which individuals seek treatment for mental health issues from a qualitative perspective, though with a limited focus on older adults. Older adults with a variety of chronic physical and mental health conditions and disabilities valued speaking with health care professionals who listen and attempt to understand their experiences (Schtompel et al., 2014; Wittink et al., 2008). Stigma can, however, play an important role in help-seeking (e.g., Conner et al., 2010; Jimenez et al., 2013; Lawrence et al., 2006). For example, Lawrence et al. (2006) found that older adults with late-life depression prioritized their personal responsibility for coping above all other strategies (e.g.,“when you have a mental health problem such as depression you should help yourself,” p. 1378) and perceived a stigma toward mental health service use. This belief in personal responsibility for symptoms of depression was shared in another qualitative research study with adults aged 65 years and older, which exemplified frequent endorsement of the phrase pulling yourself up by your bootstraps (Switzer et al., 2006). Stigma toward service use was found as a prominent theme in qualitative research by Joo et al. (2011), who found that although both White and African American older adults viewed counseling as beneficial, their use of this service was limited due to skepticism of the professional and their ability to establish a relationship with them. In contrast, some research suggests that stigma may be less of a barrier for older adults, in comparison to younger adults (e.g., Mackenzie et al., 2006, 2008).
Narratives of Mental Health Problems and Treatment Seeking Among Older Adults
Narration is the practice of storying our lives and the lives of others. As we narrate, we structure our understanding of our experiences, our identities, and our world (Salmon & Riessman, 2008). Construction of narratives is not individualistic but a process in which “. . . identities and selves are shaped by the larger sociocultural matrix of our being-in-the-world” (Smith & Sparkes, 2008, p. 6). Narrative analysis explores processes through which people actively make meaning as well as the storied resources they draw on as storylines are resisted, disputed, claimed, or elaborated (Taylor & Littleton, 2006).
Narrative gerontology posits narrative methods as particularly important and timely in research and practice with older adults (Randall, 2011). In particular, they can help understand older adults’ experiences with mental health issues and treatment-seeking (Andrews et al., 2013; Clandinin, 2013; Holstein & Gubrium, 2012; Riessman, 2008). Stories commonly told in older age include those that describe the “reminiscence bump” period of life, focusing on the events of young adulthood, and the telling of “big” (life stories) and “small” (situational stories) (Bamberg, 2007; Freeman, 2007; Kenyon & Randall, 1997). More specifically, a small but growing body of research has used narrative analysis to examine how older adults construct meaning concerning their mental health and treatment-seeking experiences (Hiskey & McPherson, 2013; Holm & Severinsson, 2014; Ogden, 2014).
The stories told by older adults who experienced lifelong schizophrenia, for instance, indicated that schizophrenia was less important to them than other aspects of their lives; they held on to their preillness identities (Ogden, 2014). Hiskey and McPherson (2013) explored older adults’ narratives of traumatic events, finding that older adults minimized experiences of hardship or the effects of war, and described traumatic events as a normal part of life. Participant narratives also belied a concern with concealing distress resulting from previous trauma, as well as a tendency to describe psychological treatment seeking as frivolous. Finally, a recent systematic review of older adults’ depression narratives highlighted core narrative threads including a need for courage, strength, and self-reliance; holding responsibility for illness; and “wearing a mask of normalcy to hide the shame” (Holm & Severinsson, 2014).
Research Objective
Although this body of research is growing, there is currently a gap in narrative knowledge of older adults’ experiences with a range of mental health issues (i.e., anxiety, depression, caregiver distress, and trauma), as well as their experiences navigating access to professional psychological treatment. Furthermore, gaps remain in the literature about how older adults tell their stories of mental health, and the ways these stories are woven into their lives and identities. The objective of this study is to explore the experiences and meaning-making processes of older adults with mental health issues who have sought psychological treatment.
Methodology
Participants and Recruitment
We obtained ethics approval for this study prior to commencing data collection. Two clinical geropsychologists working at a tertiary-care hospital setting in a large Canadian city facilitated recruitment by describing the study to persons who were pursuing outpatient psychological treatment at their clinic, were at least 60 years old, and had no noticeable signs of cognitive impairment. Level of cognitive impairment was known to clinicians based on their individual clinical work. Recruitment, interviews, and data analysis occurred concurrently.
Data Collection Procedure
Participants had the option of participating in the interview at the university (1), in their home (12), or in a research room at a local hospital (2). After providing informed consent, they participated in an in-depth, semistructured individual interview. Interviews ranged in length from 60 to 120 minutes and began with the central question: “What brought you in for treatment?” Depending on the comprehensiveness of participants’ responses to this initial question, the interviewer (K. Reynolds) asked more specific questions and employed neutral probes such as “could you tell me more?” (For additional information, please see Appendix A—Semistructured Qualitative Interview Protocol). Participants received a $10 gift card as an honorarium.
Analytic Procedure
Interviews were audio-recorded, professionally transcribed, and analyzed using Riessman’s (2008) method of narrative analysis, which integrates attention to three levels of analysis: story content (thematic focus), form and organization (structural focus), and dialogic aspects (performative focus). Field notes were documented during each interview and incorporated into ongoing analysis.
This analysis was informed more broadly by the lens of social constructionism, which flows from the interpretive tradition, and views narratives as an active co-construction of the participant and the interviewer, both having influenced the telling of the story and its meaning (Riessman, 2008). Resulting narratives demonstrate participants’ efforts to understand, interpret, and construct meanings of their complex experiences in the context of their available sociocultural resources (e.g., cultural values and beliefs).
Rigor
Qualitative rigor was ensured by utilizing criteria according to Riessman’s (2008) criterion of trustworthiness and Tracy’s (2010) criteria, including rigor and credibility. These strategies were consistent with guidelines for qualitative inquiry as issued by the American Psychological Association (APA) task force (Levitt et al., 2017). Our guiding analytic and epistemological frameworks—namely, narrative analysis and an interpretive/social constructionist paradigm—grounded our attempts to enhance the trustworthiness of our data throughout the research process, guided by the “sensitizing concepts” of trustworthiness outlined by Riessman (2008, p. 185). For instance, we identified points at which participants’ narratives converged thematically and structurally, and points at which narrative storylines and structures were divergent. We also considered alternative interpretations of dominant narrative storylines, as well as providing verbatim quotations from narratives and contextualizing narratives in time, place, and story teller. As the interviewer, K. Reynolds also kept a detailed research diary and clearly documented analytic steps as well as important decisions made throughout the research process. Finally, drawing on the concept of negotiated validity and credibility, K. Reynolds consulted with co-authors regarding emergent analysis. This helped to increase the flexibility, creativity, and thoughtfulness of data analysis.
Findings
Participants
The 11 women and 4 men who participated in this research faced a range of complex mental health issues including anxiety and depressive conditions and caregiver stress. Many had experienced traumatic events throughout their lifetime, most had comorbid physical health problems, and several were caregiving for a parent or a spouse with physical, cognitive, and/or mental health conditions. All participants were engaged in psychological treatment at the time of the interview. The average age of participants was 72 years (range: 61–86). Overall, participants had an average of 14 years of formal education (range: 11–18 years). The majority of participants (8) were married, 4 were widowed, and 3 were separated/divorced. Most identified their ethnic or racial identity as White (14). Thirteen reported being retired (for an average of 14 years, ranging from several months to 50 years), one was working full-time, and another was working part-time. Participants reported a varied household income, with one falling in the $0-$19,999 bracket, five in the $20,000-$34,999 bracket, five in the $35,000-$59,999 bracket, and four in the $60,000+ bracket.
Narrative Storylines
Although each participant’s life story and treatment-seeking story was uniquely complex and nuanced, there were shared, underlying storylines were held in common from narrator to narrator. The main or prominent stories across participants’ treatment-seeking narratives included: resistance to being labeled with mental health problems (stories of resistance, defining mental health issues, and internal role conflict); muddling through the treatment-seeking process (manifestations of chaos and system-level barriers); and emotional reactions to psychological treatment (hope and fear and mistrust).
Resistance to being labeled with mental health problems
Erving Goffman’s (1963) seminal work raised the concept of a spoiled identity as it relates to the impact of stigmatized labels (such as mental illness) on one’s developed sense of self, including effects such as ambivalence. Indeed, participants in this study strove to situate their mental health issues within or in relation to their identities. Participants described this as a search for meaning and answers after experiencing illness and a corresponding change in functioning, for example, noting, “I now need to have an explanation of who ‘me’ is.” Three interlaced narrative threads within this storyline include: stories of resistance; defining mental health problems; and experiencing internal role-conflict.
Telling stories of resistance
Woven throughout all participants’ narratives were stories of illness and health, of weakness and strength, and small (of mental health problems/treatment) and big (of broader/important life events) stories. It appeared as though the telling of big stories allowed participants the option and flexibility of incorporating their small story of mental health into their ever-evolving bigger story, actively reconstructing their sense of self. Integrating the narration of big and small stories was evident in an interview with Mary (pseudonym), an 80-year-old widow. Mary was tearful throughout the first part of the interview, as she described her experience with depression, suicide attempts, social isolation, and chronic physical health problems. Midway through Mary’s interview, she veered away from telling small stories of mental health problems and treatment seeking to telling big stories, in particular, stories in the “reminiscence bump” period of her life—early adulthood (i.e., 18–30 years old) (Kenyon et al., 2011). When she made this switch, Mary’s affect appeared to lift from sadness, as her narration transported her to a more joyous part of her life.
I think I lost my train of thought (pause). I had a very wonderful marriage. I had a very wonderful husband, but he died, 20, almost 20 years ago . . . We had 30 years of marriage . . . We never had much money but we enjoyed ourselves. We had fun.
Switching from small, painful, and potentially stigmatizing stories of complex mental and physical health issues, to big stories of a lifetime that was more enjoyable, allows Mary the capacity to distance herself from illness (thereby resisting its potential stigmatizing effects) and hold onto her identity as a healthy, happy person.
Further reflecting resistance to a stigmatized illness, participants oscillated between telling narratives of strength and health, and narratives of weakness and illness. Here, they appeared to balance strength and weakness while creating sense and meaning around their current position, in the face of illness and its prescribed treatment. An interview with Wayne, a 67-year-old married man, exemplifies this oscillation. With assistance from a cane, Wayne ambulated slowly and cautiously to the interview office, bowing his head down. When Wayne reached the office, he sat comfortably in a chair in a relaxed and dignified posture. His confidence shifted strikingly when he began describing a difficult and frustrating experience: I’d gone to the store and parked in the parking lot and I was the first car, so it wasn’t that far from the building to the car. I marched in, felt fine, looked around, and then when I came out and the car seemed like it was a long way away and I started to walk out. And I just felt kind of weird . . . I walked around a bit back and forth, but it still didn’t feel right . . . I thought, if I can walk that far, surely I can walk 20 feet to the stupid car.
Shortly thereafter, Wayne shifted away from weakness to strength as the dominant voice in his narrative. The juxtaposition of these two storylines belies an active construction of meaning surrounding how which his illness had affected his identity: I was out at the beach, which is sort of a rougher, sort of a desolate kind of terrain, and I do some fashion photography at times and we were doing a shoot, and the person that I was with had brought like a variety of wardrobes and things . . . As I said, it’s slippery, she [the model] just couldn’t even hack it. So I took the three things she was carrying plus my stuff, and I was carrying all that stuff for her, and walking on these slippery rocks without the cane and it didn’t bother me at all. So I don’t know what that means, but I guess it’s encouraging.
Wayne positions himself as the central, masculine, heroic character, rescuing the struggling supporting character. Integrating weakness and strength, and illness and health, into his sense of self allows him to avoid narrowly defining his self-identity with a small story.
The interplay of fluctuating big and small storylines throughout interviews suggested that participants were actively constructing meaning around their experiences with mental health problems, and the ways in which they could or could not be integrated into their identities. Moreoever, it highlighted participants’ deeper needs to convey information that they viewed as important to their identities. Prominent narrative illness scholars refer to the narration of big stories as the tracing around wounds (e.g., Frank, 1995). Participants in this study appeared to switch to telling big stories, for instance, when the pain of telling small stories of mental health issues and treatment seeking became too much to bear. Big stories were situated in the past and included reflections on childhood and young adulthood histories.
Defining mental health problems
Participants’ mental health narratives conveyed some difficulty clearly defining and describing their mental health challenges and a tendency to use mysterious and uncontrollable terms in ways that minimized and distanced these issues from their established identities, or presented them in dualistic and physical terms. Mental health definitions were a focal part of interviews and often changed or evolved as participants actively searched for meaning. In an interview with Maggie, a 70-year-old widowed woman, Maggie spoke about what brought her in for psychological treatment: Well in September I was feeling really poorly and one night I phoned, in the evening I phoned one of my neighbours and asked them to come over, cause I said I was feeling so awful. And she came over and she said, I think I’ll call an ambulance. I said, oh no, I don’t need an ambulance. So she said, well then I’m taking you to the hospital. I was there until the next afternoon. And I guess they, then my sons came and they hadn’t realized what rough shape I was in and they said I needed help.
In the excerpt above, Maggie used vague terms to talk about her symptoms and difficulties, such as “feeling really poorly,” “feeling so awful,” and being in “rough shape.” Later in the interview, as Maggie continued to make sense of her experience, she noted: I guess you have to say it’s an abnormal fear of being alone or being, I think it’s really kind of a loneliness thing that’s sort of just grown into more than being just lonely, but I’m not sure.
Maggie’s description of her symptoms and difficulties evolved to become increasingly clear, more meaningful, and more connected to emotional problems as she described “fears” and “loneliness,” as opposed to unclear descriptors. This shift exemplifies how her experience becomes internalized into her evolving self-story. That Maggie understands and identifies her difficulty as loneliness (e.g., in comparison to more pathologic diagnostic terms such as an anxiety or depression), may help soften the process of integrating this into her identity.
Physical definitions of mental health issues were also shared across participant narratives. Barbara, a 66-year-old married woman, provides a central example when she speaks about recognizing her need for treatment: My body, my body reacted. It was like shaky. I recognized what was happening in my body and that my body was responding in ways that I was not used to, and I knew that I needed help.
Participants also used physical metaphors to describe their mental health concerns. For example, Beth noted, “I had reached a brick wall kind of by the time he got into the home and I was exhausted.”
Joanna’s narrative provides another powerful example of defining mental health issues in physical terms. When asked about what brought her in for psychological treatment, she replied: Well it kinda all started when I had the heart palpitations, and it just, it just kinda snowballed into a lot of different things. When I had the heart palpitations, I had them when I was in [location] visiting my sister, and then I had a doctor’s appointment when I got here and they continued when I came back. So of course, I mentioned it to him and he did all the tests, you know, the echo and the stress test and I wore a heart monitor . . . Like I was even feeling the heart palpitations when they were okay but I was still feeling them and then it went to headaches and I had stomach problems.
Joanna went on to describe, as difficulties, her lack of trust in her doctor when he diagnosed her with anxiety, and her lack of understanding that her physical symptoms were likely an indication of a mental health issue. Joanna takes us through her process of re-defining her mental health issue in the following excerpt: I kept doubting my doctor about the headaches. I mean, I knew the heart palpitations and it was being controlled by the medication, so, and I would take my blood pressure and the heart beat and it would be normal, but I would be feeling it, so I kept telling myself, well that, you know, it’s fine. It’s fine. Your heart, cause they said, my heart is fine. It’s just the rapid heartbeat. So I kept telling myself, you’re fine. You’re fine. And I would write little sticky notes—relax, you’ll be okay, all those things, so I would just try and stick it in my head. And then when the headaches started, ugh, well then, when I talked to my doctor he said, it’s just related to the anxiety, and I was thinking, well how does he know that. He never did any CAT scan or anything, so I was doubting him. And then finally I realized that he was right. It’s hard to imagine that anxiety can bring on those physical symptoms. I guess I didn’t believe that.
Here, Joanna described her own process of investigating whether her physical symptoms could be attributed to a mental health condition. Perhaps in part to regain a sense of control and agency, Joanna portrays herself as initially in disbelief or resistant toward the diagnosis of an anxiety disorder from her doctor, and as actively trying to understand her symptoms and illness.
Experiencing internal role conflict
In their narratives, participants also explored how their diagnosis, and new role as patient, would fit with other, more established roles. Resistance to mental health labeling can reflect the internal role conflict involved in being diagnosed with or treated for a mental health problem. Participants navigated the tension between self as patient and self as person; caregiver participants faced tension between self as daughter or spouse and self as caregiver/health care provider. Throughout interviews, participants expressed their desire to be seen as people within the health care system—people who have lived separate from illness and caregiving.
An excerpt from an interview with George highlights the struggle to be seen as a whole person as opposed to a patient. When describing his route to care, this 70-year-old widowed man noted his urge to hold onto his role as person, in the face of the health care system pulling him toward patient passivity: So the first meeting was a little, maybe because the nurse that was supposed to see me or the physiotherapist or whatever, occupational therapist, he wasn’t there so I had to talk to somebody else, and I had to wait a long time, so it was rough going. But that’s, and I thought, there has to be somebody who listens to a person like me. I mean, I contributed to this community. I’ve been on several boards. I worked for 20 years. I was actually a founding member of the [community group].
George initially described being ushered through the health care system as a patient. His speech gained momentum and fervor and his affect became more positive as he emphasized his role as person, and his need for this to be recognized within the health care system. This challenge and tension of role navigation, from person to patient and back again, and trying to preserve an identity as person, was evident across many interviews.
Participants who identified as caregivers and experienced difficulty with caregiver stress narrated a similar type of challenge regarding tensions between self as daughter or spouse and self as caregiver/health care provider. Participants also had to determine how their newer, third role as patient; fits with these other perhaps more established roles. A primary example of this was from an interview with Beth, a 67-year-old married woman who was providing care for her husband who has Alzheimer’s disease. Beth describes her difficulty making sense of her changing and conflicting roles as helper and person who needs help: You hate to overload your friends with always talking about the same thing and dumping, cause you know, that’s, that can be draining on friendships. You also don’t want to overburden your children because, you know, this is their Dad. They’re experiencing a loss as well that they’re losing their Dad, their Grandpa. And they’re young, and you know, just, like they have little children and busy lives, so you don’t want to and it’s, you know, as a parent you don’t want to be the needy one. Your role has been to be the helper all this time and so now for the roles to change, that’s hard.
These examples illustrate how older adults with mental health issues actively engage in identity construction or reconstruction as they seek treatment. These stories reflect attempts to preserve roles and identities as a person, not just a patient—a person with both health and illness and strength and weakness, and a person who has lived a whole other life beyond hospital walls. These examples also illuminate the challenges that caregivers face in balancing role and identity tensions.
Overall, participants emphasized or performed resistance in telling their narratives. They sought to address the impact of being labeled with a mental health problem on their sense of self and identity in the structure and content of their stories, as well as the ways in which stories were performed. It is possible that such patterns of resistance and/or integration informed their subsequent pathways to mental health treatment, as well as how they narrated these pathways.
Muddling through the treatment-seeking process
In this second storyline, older adults’ treatment-seeking narratives appeared to reflect a form of system-induced passivity, neither resisting nor actively seeking out psychological treatment, and meandering from one solution, referral, or treatment alternative to the next (as expressed, for instance, in Pescosolido et al., 1998). On some level, this may also reflect treatment ambivalence or resistance. Participants’ stories referred to the physically and emotionally draining process of traveling from one silo of care to another, in the absence of a clear “road map.” They spoke of a loss of voice and active participation. They spoke of system-level barriers, and highlighted experiences that compounded their difficulties navigating to access treatment.
System-level barriers
Wayne describes a prototypical example of systemic-level barriers to treatment seeking, including silos of care, lack of a clear road map to follow, lack of adequate guidance from health care professionals, and lack of care coordination between health care professionals. In describing his treatment-seeking process, Wayne visited the emergency room, an magnetic resonance imaging (MRI) specialist, a neurologist, his family doctor, a physiotherapist, an occupational therapist, and finally, a psychologist. Each professional was located at a distance from the next, and there were grave information-sharing problems between services. Wayne spoke in a way that emphasized a deflated or saddened affect, and perhaps a sense of helplessness learned through this meandering route to treatment.
It was sort of like limping from one possible solution to another, you know. There were these different people along the way and some seemed to know more than others. Some knew nothing. Some knew a lot, but nobody was saying, aha, you know, here’s what you have to do. Nobody said that. But you just sort of inch your way along from one possible resource to another . . . You know, I have to admit, nobody seemed very enthusiastic about solving the problem.
Telling a similar type of narrative, Brian’s route to finding solutions for his difficulty with anxiety spanned approximately 20 years. He reported meeting with his family doctor, community mental health organizations, a psychiatrist, and a psychologist. He tried self-help, medication, and psychological treatments. With negative affect, Brian noted: After a while it gets frustrating. You start grasping at straws, you know. Is there any hope of getting through this or getting some kind of, you know, is there a magic pill or surgery or something in the brain that they can hit a switch and shut this, you know, whatever activates these feelings?
This frustration and lack of direction was shared by others, including Bonnie, who noted: “You’re just sort of putting together a road map, like where’s the plan here? There is no plan. No map.”
By the very nature of the difficulties that led them to seek psychological treatment, participants who identified as caregivers experienced difficulty accessing needed care at the times that they needed it most. Caregiver narratives about treatment-seeking spoke of the prominence, within the health care system, of the needs of the person they were caring for, and the absence of attention to their own voices and needs. For instance, appointments centered on the person they were caring for, with no time to have their concerns heard. Likewise, Bonnie, a caregiver for her mother, noted: People came with help for, “if you want I can take your mom to the doctor.” Or “if you want, I can get you hooked up with this woman.” There was nothing about me. It was all about my Mom because that was always the focus, right? When I look back at it now, I don’t know how I felt about it then, but now when I look back I can see I wasn’t asking for any help for myself, I was asking for help for my mom, you know.
Although Bonnie was able to find her voice during the interview and discuss her difficulty obtaining treatment, many of the caregiver participants remained focused on the struggles of the person they were caring for, in accessing and seeking treatment and care.
Emotional reactions to psychological treatment
Participants’ stories about approaching psychological treatment (in response to an interview question) reflected a complex range of interpretations, with emotional reactions ranging from hope to fear and mistrust. A self-described lack of knowledge and understanding about what psychological treatment might be like was dominant across narratives, although participants varied in their dispositions toward beginning treatment. For instance, Joanna exemplified hopeful attitudes toward beginning psychological treatment despite the absence of developed knowledge of such treatment. She expressed this shared storyline in interaction with the interviewer:
I was anxious to go because I really, really wanted the help, so that’s why I was actually quite excited to go. I thought well maybe this will help me, so I was pretty positive about going there.
What were you excited about?
Well because I wanted somebody to help me. You know, I thought, oh maybe they can help me and maybe I can talk about all these things, and yeah, I was excited. I wasn’t nervous one little bit.
Other participants, in contrast, lacked knowledge but described negative dispositions toward treatment. Maggie provided an example of this storyline when she discussed her negative reaction to finding out that she was being referred to a psychologist: I went there for I’m not sure how long and I saw the social worker, and well I saw the physiotherapist and the dietician and the whole bunch, and then they asked me if I would see a psychologist. I think we had a meeting together and I really cried. I cried and cried. But I said well, I guess there’s something wrong me so I wouldn’t refuse to go and so they made the appointment.
Related to fear and mistrust, many participants expressed initial reluctance to pursue psychological treatment or confide in friends and family members, connected to their awareness of the strong social stigma. Maggie elaborated on this reluctance to confide in others regarding her mental health issues and treatment due to concerns about stigma: I mean my family knows. I’m sure my next-door neighbours know, but other than that, I’ve kept it very quiet because I just feel, I don’t know what people think. I remember saying this to the nurse, I said, you know, people talk and she said, that’s nobody’s business and she said, you just need some help right now and it’s nothing to be ashamed of. But I know that people talk.
One participant, Brian, described how he became able to reframe mental health treatment-seeking in a destigmatizing way, given his need to pursue treatment: Well, there might have a been a little bit of discomfort thinking about this, you know, when you go into the place there at [hospital] and you see people that are staying there, you know, for periods of time, so yeah, there was a bit of a different feeling about it. But I feel they’re there to help you and, you know, you read the statistics and stuff, you know, there are so many people that do have these issues, and it’s not something that’s a rare thing. So yeah after that, I figured, hey I’m here to get help. I don’t care what anybody thinks, and if it works, it works.
Although Brian initially felt uncomfortable seeking treatment due to its physical location in the inpatient unit at the hospital, he rationalizes his decision to seek help. In a similar manner, Bonnie (referred to “geriatric psychology” services) prioritized the importance of receiving help over concern for stigma: Well actually, until I Googled [psychologist name] and I didn’t know they were into the geriatric stuff, and then I thought, well I guess I qualify because I’m 65, you know, even though you don’t think of yourself as older, but I don’t know. I wasn’t quite sure if they only dealt with geriatrics or if that’s the main specialty, I guess, or if I got referred to [psychologist name] because my mom was geriatric. Like I wasn’t ever sure about that and I never really asked [psychologist] because I didn’t really care, you know . . . So I thought, well, you know, it’s ok. And then I thought, oh god, maybe I’m crazy. Maybe I’ve gone nuts, but I kinda knew I hadn’t . . . I got over that quickly. I just thought, you know what, I need help. I don’t care what they [psychologists] call themselves. I need some help, so you know, that’s what I did.
Bonnie elaborated on important questions tied to her identity. She negotiates the meaning of these questions using a similar logical process to that employed by Brian—elevating the need for treatment over and above possible stigma of mental health treatment. Other participants actively reproduced stigmatizing interpretations of mental health treatment, and tended to express strong emotional reactions to the idea of treatment, such as fear and mistrust. Bill, for instance, was concerned about what he believed was the potential for forced incarceration: When you think of, uh, [hospital], you think of a place where they may make decisions regarding what you talk about that could actually end you up in [inpatient facility]. If the word suicide comes up, they probably have the right to send you to [inpatient facility] . . . I feel that a psychologist is a very powerful person and his weight carries a lot with the government I’m sure.
Bill’s strong beliefs invoke a fear of psychologists and a desire to self-sensor to avoid the possibility of involuntary hospital admission.
Discussion
The objective of this study was to explore the narratives of older adults with mental health issues who came to use psychological treatment. Participants’ narratives indicated processes associated with resistance to being labeled; muddling through to seek help within unhelpful systems; and varying interpretations of and dispositions toward psychological treatment. Although we have presented narrative storylines somewhat separately, it is likely that initial resistance would be more likely to lead to muddling, which might in turn lead to negative expectations about treatment. In line with Frank’s (1995) work in illness narratives, participants’ experiences of illness appeared to lead them to question and explore past and present identities. By telling stories of illness and stories of health, stories of weakness and stories of strength, and stories small (problem-focused) and big (life-focused), participants may have been attempting to understand and create a new definition of who they were after the chaos of significant mental health challenges disrupted their lives. It is also possible that by telling big stories and stories of health, older adults were attempting to preserve their established, destigmatized identities, as an active way to cope with their stigmatized label (Goffman, 1963). As they negotiated a mental health diagnosis into their identity, participants shared the theme of “my life has value” (e.g., Ogden, 2014), through telling big stories of life as strong, successful, and whole; and small stories concerning the importance of being treated like more like a person and less like a patient in the health care system.
Participants’ narratives portrayed difficulty defining mental health issues (as in Kokanovic et al., 2013; Mallinson & Popay, 2007; see also Farrer et al., 2008), at times describing them as mysterious, uncontrollable, dualistic, and somatic. Participants also minimized and distanced themselves from mental health challenges. Such definitions may have reflected their resistance in the context of considerable stigma (e.g., Goffman, 1963). This, in turn, may have increased the complexity of treatment seeking, contributing to (or manifesting further within) expressed uncertainty regarding diagnosis and referrals; potentially this might also lead to a longer treatment-seeking process.
Notably, every participant in this study told a narrative that contained features of muddling through (Pescosolido et al., 1998)—through multiple referral sources, disparate silos of care, without clear direction. These narratives may in part reflect paternalistic approaches to health care treatment decision making, in which medical diagnoses and decisions are made by medical professionals, and followed by passive recipients of care. Older adults in particular tend to report a lower preference to participate in health care decisions in comparison to their younger counterparts (Schneider et al., 2006). Emergent narratives from our research may also reflect systemic barriers to accessing services in a fragmented and uncoordinated care system (e.g., Mackenzie et al., 1999). Finally, these narrations may serve interpretive functions, especially for participants who felt let down or frustrated by “the system”—it may help these participants feel a sense of kinship with others experiencing similar problems, and to begin to construct an emerging identity as empowered self-advocate.
Once older adults were referred to see a psychologist, they reported varying interpretations of and emotional reactions toward this treatment. A lack of comprehension about the nature of psychological treatment, alongside stigma, was dominant across narratives.
This study contributes to the literature on narrative gerontology and mental health service use. Findings highlight implications for systemic changes. Increased efforts to promote mental health literacy among older adults is needed, in helping them to recognize, describe, and seek appropriate treatment for mental health problems in ways that help them retain a sense of agency and manage the implications for their identities. Improved provision of mental health information is emphasized throughout the aging and mental health literature (Segal et al., 2005). Increased ability to recognize and describe mental health problems might help older adults proceed earlier and more directly to service, perhaps mitigating the chaotic and often muddling nature of this experience. Findings of this research lend support for the inclusion of additional resources and programming to help older adults and their family members navigate through the disparate silos of care in the Canadian health care system. These supports might include system maps widely disseminated across communities in various formats indicating available services, nature of services, location, and referral processes. Further to this, collaborative care models that integrate primary care services and specialty mental health services have important implications regarding their utility to meet the complex and unique needs of older adults (Bartels et al., 2004; Patel et al., 2013; Speer & Schneider, 2003; Unützer, 2002). Although it is important to acknowledge that not all older adults want to be involved in their health care decision making, extra efforts could be made, by health care professionals and at broader policy levels, to support the involvement of older adults in this regard. Those who wish to be involved can be provided more information and autonomy to choose which treatment options (if any) best suit their needs and wishes at that particular time.
Finally, these findings have important implications for the psychological treatment of older adults. Increased implementation of person-centered care and narrative medicine practices may be warranted, given study participants’ expressed desire to view themselves, and be viewed by others as, persons rather than patients. Person-focused care promotes attention to the whole person receiving treatment, and integrates knowledge about the person, their well-being, and needs; similarly, narrative medicine promotes increased empathy and reflection in health care (Brown, 2010; Charon, 2006).
This research is not without limitations. One notable limitation is that we focused on older adults who sought psychological treatment, as opposed to those who did not arrive at this type of treatment, or who came to use other types of services including those offered through their primary care physician, psychiatrist, social worker, or other types of mental health professionals. Future research exploring treatment-seeking should seek to sample from a wide range of services and systems in order to more comprehensively understand barriers and access to mental health treatment. An additional limitation of this research is the homogeneous nature of the sample, with the majority of participants endorsing relatively high educational attainment and White ethnicity. There was an additional sample imbalance in the number of male compared to female participants. Research with greater diversity in these areas might add further understanding into the mental health treatment-seeking experiences of older adults.
Notwithstanding these limitations, the current research makes a novel approach to a small but growing body of research exploring older adults’ experiences with mental health issues and treatment-seeking. Using a narrative approach provides particular insight into meaning-making processes in this regard. Future research can explore further the implications of particular interpretations for treatment-seeking duration, quality, pathways, and outcomes.
Footnotes
Appendix A
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by funding from the Canadian Institutes of Health Research Doctoral Research Award and the University of Manitoba Centre on Aging (K. Reynolds).
