Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

Existing But Not Living: Experiences of Long-Term Caregivers of Individuals With Unipolar Depression

Isaura Camilleri, MSc; Martin Ward, MPhil; Josianne Scerri, PhD

Abstract

The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were “existing but not living.” These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression. [Journal of Psychosocial Nursing and Mental Health Services, 55(12), 16–21.]

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Abstract

The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were “existing but not living.” These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression. [Journal of Psychosocial Nursing and Mental Health Services, 55(12), 16–21.]

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It is estimated that by 2020 depression will rank second for global burden of disease (Marcus, Yasamy, van Ommeren, Chisholm, & Saxena, 2012). The shift from long-term hospitalization of individuals with mental illness toward care in the community inevitably places a greater burden on caregivers (Fenech & Scerri, 2013), who often feel incompetent to support care recipients and unprepared for the impact of the illness on their family, occupation, and social life (Albert & Simpson, 2015). This increased burden may also have a detrimental effect on caregivers, resulting in poorer mental and physical health and a decision to abandon care (Caqueo-Urizar, Gutierrez-Maldonado, & Miranda-Castillo, 2009). Furthermore, adverse interactions between informal caregivers and individuals with mental illness have been associated with poorer health outcomes in both populations (Yesufu-Udechuku et al., 2015)

A recent meta-ethnographic synthesis by Priestley and McPherson (2016) identified 15 qualitative studies that explored the experiences of informal caregivers of individuals with depression. These studies highlight the potential negative impact experienced by caregivers that include: work constraints (Highet, McNair, Davenport, & Hickie, 2004; Stjernsward & Ostman, 2008), financial concerns (Skundberg-Kletthagen, Wangensteen, Hall-Lord, & Hedelin, 2014), social isolation (Highet et al., 2004; Stjernsward & Ostman, 2008), renouncement of leisure activities (Skundberg-Kletthagen et al., 2014), changes in family relationships (Highet et al., 2004), and impaired mental and emotional states (Gonzalez, Romero, Lopez, Ramirez, & Stefanelli, 2010; Harris, Pistrang, & Barker, 2006; Highet et al., 2004; Highet, Thompson, & McNair, 2005; Radfar, Ahmadi, & Khoshknab, 2014; Skundberg-Kletthagen et al., 2014; Stjernsward & Ostman, 2008). Various studies have also identified positive experiences in providing care to an individual with mental illness, such as that of personal growth (Skundberg-Kletthagen et al., 2014; Stjernsward & Ostman, 2008).

However, two main limitations can be identified in the extant qualitative literature to date. Most studies failed to include details about years of caregiving experience (Stjernsward & Ostman, 2008), even though caregiving burden is influenced by a prolonged duration of caring (Kumar & Gupta, 2014). In fact, a quantitative study by Saliba (2013) on 94 informal caregivers of individuals with depression demonstrated that those providing care for more than 11 years experienced greater consequences than those providing less years of caring. Although acknowledging that quantitative studies generate useful information, they do not provide insight into what this increased burden represents for long-term caregivers. Furthermore, although two qualitative studies (Muscroft & Bowl, 2000, duration of caregiving: 0.6 to 30 years; Radfar et al., 2014, duration of caregiving: 1 to 20 years) provided the duration of caregiving experience, this aspect was not included when interpreting the findings. Another limitation identified was the recruitment of informal caregivers via support groups, in which case participants may not have been clinically diagnosed with unipolar depression (Priestley & McPherson, 2016).

Hence, the current study addresses a gap in the literature by exploring the experiences of long-term caregivers of adults with unipolar depression. For the purpose of the current study, a long-term caregiver is defined as an individual who has provided care for >11 years. The information thus generated can guide the formulation of specific interventions for long-term caregivers, as different types of support are beneficial to caregivers at different stages of the caregiving trajectory (Priestley & McPherson, 2016). Furthermore, the current study addresses a further limitation in the literature by recruiting caregivers of individuals who were clinically diagnosed with unipolar depression.

Method

Design

A qualitative design using a descriptive phenomenological approach was selected due to the exploratory nature of the study. For the current study, this consisted of developing an understanding of the essence of lived experience for long-term caregivers of individuals diagnosed with unipolar depression.

Participants

Potential participants were approached by psychiatric nurses who provide support to mental health patients within a community setting. These gatekeepers provided informal caregivers with an information letter outlining details of the study. A purposive sample of nine participants was recruited, comprising six females and three males. Mean age of participants was 61.7 years (age range = 25 to 85 years). Four caregivers were spouses/partners, two were siblings, two were daughters, and one was a parent. The duration of caregiving experience ranged between 15 and 40 years. Inclusion criteria for the study were: (a) age 18 or older, (b) primary informal caregiver of an individual clinically diagnosed with ICD-10 classified unipolar depression, and (c) individuals who had been providing long-term care to someone with unipolar depression for >11 years.

Ethical Considerations

Ethical approval to conduct the study was obtained from the local institutional research ethics committee. Participants were informed that they were free to withdraw at any time without the need to provide justification. Individuals who were willing to participate in the study were contacted by the first author (I.C.) and any further queries relating to the study were clarified. A written consent form was signed prior to commencement of the interview. The service of a psychologist was also available, should any participant experience distress due to the interview. Confidentiality was maintained through the use of pseudonyms to protect participants' identity. Audio recordings and transcripts were coded and stored in a locked cabinet.

Procedure

Interviews were conducted in settings requested by participants. Eight interviews took place in the informal caregivers' homes and one interview was held at a hospital. Two rounds of semi-structured interviews were conducted with each participant. The second interview provided an opportunity for further exploration and clarification of issues raised in the first interview. The duration of interviews was between 35 and 95 minutes, with an average of 60 minutes. All interviews were audio recorded with participants' consent and transcribed verbatim by the first author.

Data Analysis

Using the method of analysis put forward by Giorgi (1997), the transcripts were read several times for the researchers to obtain a comprehensive sense of the information collected. During this process, there was a bracketing of any preconceived beliefs and opinions, thus preventing any preconceptions from influencing the analysis. The second step involved the identification of meaning units from a line-by-line review of the transcripts. These meaning units expressed a self-contained meaning (Giorgi, 1985) and illustrated the experience of the long-term caregivers of individuals with depression. The third step involved relating the meaning units together and to the aim of the study. This step enabled the identification of themes and sub-themes. The fourth step involved the synthesis of all meaning units to provide the essence of the phenomenon.

Rigor

Lincoln and Guba (1985) recommend various criteria that need to be met when conducting qualitative research, including credibility and auditability. Credibility was ensured by bracketing any preconceived beliefs and opinions relating to the area being explored. This bracketing ensured that participants' descriptions alone created a picture of the experience of living with an individual diagnosed with depression. To ensure auditability, the step-by-step analytical process recommended by Giorgi (1997) was followed. The first author conducted all interviews and performed the transcriptions. Her work was validated during the third and fourth step of the data analysis by the second (M.W.) and third (J.S.) authors.

Findings

The major themes and sub-themes, which represent the lived experiences of the informal caregivers, are outlined in the Table. The first theme, Flooded by Emotions, explores the gamut of emotions experienced by informal caregivers. The second theme, Personal Growth and Satisfaction, describes the feelings of responsibility, but nonetheless satisfaction, experienced when providing support to an individual with depression, whereas the third theme, Psychosocial Effects and Challenges, describes the psychosocial impact of providing care to an individual with depression.

Themes and Sub-Themes Concerning the Lived Experiences of Long-Term Caregivers of Individuals with Unipolar Depression

Table:

Themes and Sub-Themes Concerning the Lived Experiences of Long-Term Caregivers of Individuals with Unipolar Depression

The findings are presented with verbatim extracts (all names are pseudonyms).

Flooded by Emotions

Caregivers described their daily struggles with their emotions as intense and relentless, with one participant, Chris, stating that he was “existing but not living.” Most participants expressed a range of emotions such as frustration, sadness, hopelessness, and fear, as they perceived that they were living on the terms of the individual with depression.

One participant, Miriam, described a scenario in which she constantly strived to protect her ill relative from resorting to self-harm, stating:

If she is not with me, I am very apprehensive because I worry constantly that she will do something to harm herself, all the time I am ringing her up [from work], all the time I am ruminating and thinking that something might happen to her and I constantly look at my watch hoping that it is time to leave work [to return back home to her].

Such fears arose due to the unpredictability of the care recipients' behavior and, in some cases, due to their history of aggression or attempted suicide, as stated by Steve:

I am always terrified and scared when it is time to return home after work because I never know what I am going to find inside my house. Whether it will be my wife fighting with the children or huddled in a corner sobbing in desperation or whether as soon as she sees me, saying that she has had enough. I used to feel dejected to return home, not knowing what I would find.

Two participants also expressed fear of being harmed by the care recipient. One participant, Anne, further described how a close relative of her ill husband (who also experienced depression) had severely physically assaulted his wife. Consequently, Anne expected that the same fate would befall her and her family. These fears proved so overwhelming that she struggled to complete tasks and was always on edge, stating:

I was scared that he would kill us all.... As soon as I speak to him he starts to wreck and break everything in sight…. My husband once told me that he will grab a gun and kill us all…. I would go to the doctor and ask him to prescribe something for me to help me calm down.

Another caregiver, Elaine, expressed her worries regarding her son's future should she pass away. She constantly worried that there was no one else who could be entrusted with her son's care and would contend with his challenging behavior and demands, stating, “…and I always worry and ruminate about what will happen to him and who will take care of him after I pass away…. He's not capable of taking care of himself.”

Most participants described a sense of frustration and uncertainty. They felt that they were treading on ice as they might say or do something that would offend their hypersensitive care recipient. Frustration was expressed in striving to effectively communicate with the care recipient, who often responded in a confrontational manner, as stated by Steve:

I used to feel deeply frustrated because I would not know how to deal with her…I could not understand, she would disagree with me on everything. For example, if I say something is round, she would say that it is square…or if we agreed to go out shopping and I arrived just 5 minutes late, she would tell me that my friends were my priority.

Two participants also expressed their frustration at the restrictions imposed on their lives. They described that having depression not only isolated the care recipient from others but also isolated those who provided care. This situation was exemplified by Karl who described missing having time for himself and his own needs. He described his loss of freedom due to the caregiving role as being “caged in”:

Let me tell you…the fact that she deprives you of your freedom is not easy... you feel tied down...she wants my comfort all the time, she wants me near her and to talk to her continuously...so you end up feeling that you are caged in.

Miriam recounted how as a child she perceived herself different to other children, as her mother rarely attended school activities due to her health. Moreover, she described having to learn how to cope on her own, in an effort to spare her mother any additional burden. She expressed feeling upset about this even to the present day:

I used to feel very miserable due to school activities…. I would see my friends accompanied by their parents, whilst my mother could not always attend because of her depression, this affected me a lot…especially when I was younger…that feeling of being different.

Feelings of hopelessness were also described by many caregivers. Four participants used the metaphorical expression “flogging a dead horse,” which stressed that at times any efforts made were futile:

I feel that at times, try as much as I try with her, all is pointless…. For example, sometimes after we go out, on our return home she starts off, “Now what was the use of us going out to eat, we spent money and I am still feeling miserable?” (Steve)

Personal Growth and Satisfaction

Although the caregiving experience was perceived as having an impact on their lives, most participants stated that the care recipient was dear to them and that they gained satisfaction by supporting them, as Karl stated, “Well, I gain satisfaction because I am helping her.... Since at the same time, helping out gives me personal satisfaction. She feels better when I help her, so naturally I feel satisfied.”

Daniela stressed that the thought of her mother's support in the past was what inspired her to repay this solicitude and remain calm when interacting with her mother, stating, “I say if it were not for her, I would not have got so far [in life] and this thought enables me to remain calm with her…because she did a lot for us.”

Some participants also perceived becoming more resilient due to the challenges they faced and that this served them well to cope with life stressors, as stated by Daniela, “I dare say that there were positive effects…for example, I meet people who as soon as they encounter a small problem, they quit…I don't do that…I row harder.”

Psychosocial Effects and Challenges

Participants described how the caregiving role provided a number of psychosocial and social challenges, as well as raising the issue of stigmatization. To some extent, the caregiving role disrupted participants' social lives. They revealed that depression not only isolated their care recipient but they also felt socially isolated, as described by Karl: “Sometimes I would like to go out and have some time for myself…to relax a bit...go to the pub and have a few words with other people but I cannot... she [care recipient] needs me.”

Role reversal was also described by two participants. Miriam explained that she did not live her childhood, as she had to take on multiple roles in the family. Moreover, with the death of her father, Miriam had to be “the man in the house,” not only providing care to her ill mother but also financial support:

Apart from that, I had to go out to work… There was the need for me to work part-time from the age of 14 because I had to help my mother with the household expenses…. Mummy cannot help, I have to help Mummy.

Feelings of stigmatization were expressed by six participants, who perceived that the stigma targeted their care recipient and themselves. In fact, some participants described going to great lengths to avoid any gossip about their care recipient, as Chris stated, “Well, I always strive to do my utmost to avoid my wife from being admitted to the psychiatric hospital, even just to prevent people from getting to know.”

Another participant, Catherine, confided that she feared that her brother would be ridiculed by others, stating, “My brother likes company, he likes to go out in the evenings. However, I'm always afraid that people will make fun of him because he has a mental illness.”

Two participants also described being highly sensitive to the general language used in conversation. Catherine described how the use of words such as “mad” and “crazy” in colloquial conversations not relating to mental illness proved to be very upsetting for her as “no one knows as much as myself the true significance of being mentally ill.”

Discussion

Gonzalez et al. (2010) describe depression as a “family disease,” which highlights the significant mental and physical impact of the disease on individuals living with a family member with depression. However, according to Hadrys, Adamowski, and Kiejna (2011), the burden experienced by caregivers is associated with their appraisal of the caregiving experience. Hence, it is particularly salient to explore the experiences of long-term caregivers of individuals with unipolar depression, as the experience of caregiving is not a static process (Priestley & McPherson, 2016).

Findings from the current study concur with the available literature (Harris et al., 2006; Highet et al., 2004; Stjernsward & Ostman, 2008) and extend the research to date by identifying the emotional and social difficulties experienced by caregivers of individuals with depression. Long-term caregivers adapt by adjusting their behavior and through restraining their emotions. In this manner, the informal caregiver can avoid conflict as well as provide support to their ill family member. However, when striving to live on the terms of their care recipient, such caregivers are made more susceptible to experiencing an emotional burden (Harris et al., 2006). This situation is reflected in the statement by Chris, who described his life as “existing but not living.”

Participants described experiencing a gamut of emotions. Such feelings included fear and distress, which arose due to the care recipient's unpredictable behavior and rapid mood swings. Episodes of verbal and physical abuse were also cited and corroborate the findings in relevant studies to date (Harris et al., 2006; Radfar et al., 2014). The need to maintain constant vigilance was also voiced and perceived as a means to avoid harm to the care recipient and others. Feelings of uncertainty and dread were also expressed, with caregivers being unaware of what awaited them on their return home from work or an errand. Hence, the current study extends the available literature by demonstrating that long-term caregivers continue to struggle with feelings of fear, distress, and uncertainty and that a need exists for provision of ongoing support.

The psychosocial challenges encountered were also stressed, with most participants highlighting a negative perception of mental illness, such as depression. Most caregivers worried that having a family member with mental illness would influence the way the public would interact with them. Caregivers in the current study cited that they were afraid that people would make fun of their care recipient. This fear of being stigmatized could have additional implications, as it constitutes one of the main barriers to mental health treatment (Clement et al., 2015). Some participants also highlighted the switching of roles, with one participant (Miriam) describing her role as the man of the house. This role reversal has also been reported in various studies (Skundberg-Kletthagen et al., 2014; Stjernsward, & Ostman, 2008) with relatives of individuals with depression.

Although most long-term caregivers expressed a significant level of burden imposed by caregiving, some participants expressed feelings of satisfaction and fulfillment because they were supporting the care recipient. Karl described satisfaction when helping his spouse, and these findings are congruent with other studies (Skundberg-Kletthagen et al., 2014; Stjernsward & Ostman, 2008). However, the current study extends the extant literature by demonstrating that long-term caregivers perceived that they had become more resilient and could face any adversity with greater perseverance. Moreover, most participants expressed gratitude toward the care recipient and an appreciation of the support that he/she had provided in the past. Hence, these findings contribute to the paucity of available research cited by Brighton et al. (2016) in relation to the positive aspects of caregiving for individuals with severe mental illness.

Limitations

Several limitations should be noted. The current study described the lived experiences of a small sample of nine informal long-term caregivers. Hence, the findings obtained cannot be generalized to the wider population of informal caregivers of individuals with depression. The aim of the study, however, was not to generalize, but to explore and understand the lived experiences of these informal caregivers. In addition, a number of informal caregivers who were approached declined to participate, citing various reasons including fear of stigma. This aspect was similarly cited in the study by Skundberg-Kletthagen et al. (2014), in which 54% of caregivers approached declined to participate. Thus, those caregivers who refused to participate may have been experiencing a greater burden or had poorer coping strategies. Furthermore, participants in the current study all had a family member with mental illness who was receiving community support from a mental health nursing team. Hence, the lived experiences of informal caregivers could vary when no support was provided to their care recipient in the community setting.

Clinical Implications

There is a need for more extensive community education about depression and productive partnership with multi-disciplinary teams of professionals within health care systems. Such an association should be an ongoing process, during which psychosocial and emotional rehabilitation are provided to caregivers of individuals with depression throughout the caregiving trajectory and not limited to the post-diagnosis period. Such interventions could incorporate communication strategies, stress management, psychoeducation, and problem-solving techniques. Moreover, professionals should encourage and assist long-term caregivers in identifying individuals within their social network with whom they could confide, as well as providing information regarding accessing support groups (Priestley & McPherson, 2016). Although psychiatric nurses might not always be the lead individuals for such work, it would certainly fall on their shoulders to measure the impact of the support process on caregivers and care recipients. Such support options may also include discrete online services, such as Big White Wall (access https://www.bigwhitewall.com), in which individuals who are anxious, stressed, or not coping with a situation are supported by other members of this online community under the guidance of trained professionals.

Conclusion

The current study contributes to the extant literature by demonstrating that although long-term caregivers adjust their behavior in an effort to decrease conflict, they are “existing” on the terms of their care recipient and are not “living” their own lives. This experience affected the emotional, psychological, and social well-being of long-term caregivers. In view of this, support provided to caregivers should be ongoing and not limited to the post-diagnosis period, as the caregiving experience is not static. Furthermore, there is the need to consider the complexity of each scenario when providing support to such caregivers, as one-size-fits-all interventions do not target their unique concerns and needs effectively. Support should be achieved through the development of individualized care plans with active involvement of the caregiver.

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Themes and Sub-Themes Concerning the Lived Experiences of Long-Term Caregivers of Individuals with Unipolar Depression

ThemeSub-Theme
Flooded by emotions

Fear for the care recipient's well-being and themselves

Frustration with the care recipient

Feeling a sense of hopelessness

Personal growth and satisfaction

Expression of gratitude to the family member with mental illness

Development of resilience

Psychosocial effects and challenges

Isolated from friends

Role change

Stigmatization

Authors

Ms. Camilleri is Registered Psychiatric Nurse, Mount Carmel Hospital, Attard; and Mr. Ward is Visiting Senior Lecturer, and Dr. Scerri is Senior Lecturer, Department of Mental Health, University of Malta, Tal-Qroqq, Malta. Dr. Scerri is also Honorary Senior Lecturer, Kingston University and St George's University of London, United Kingdom.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Josianne Scerri, PhD, Senior Lecturer, Department of Mental Health, University of Malta, Room 40, Tal-Qroqq, Malta; e-mail: josianne.scerri@um.edu.mt.

Received: March 04, 2017
Accepted: July 26, 2017
Posted Online: August 28, 2017

10.3928/02793695-20170818-06

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