According to data from the Ministry of Health in Turkey, 18% of the population experiences at least one mental illness throughout their lives (Turkish Psychological Association, 2011). When a family member is diagnosed with a chronic mental illness, having to take on the role of caregiver is an unplanned, long-term process (Atagün, Balaban, Atagün, Elagoz, & Ozpolat, 2011), which leads to numerous difficulties for the individual and family. Due to this new role, family members/caregivers tend to experience stress, burden of care, and stigma (Chan, 2011; Dalky, Qandil, Natour, & Janet, 2017; Tan et al., 2012).
Several qualitative and quantitative studies in different cultures and sample groups have reported experiences of individuals who provide care to people with chronic mental illness (Chang & Horrocks, 2006; Huang, Hung, Sun, Lin, & Chen, 2009; Jönsson, Skärsäter, Wijk, & Danielson, 2011; Veltman, Cameron, & Stewart, 2002). Caregivers define the process of diagnosis as a hard and long road that includes unfulfilled needs for information, being excluded from the medical care process, and problematic relationships with health care professionals (Outram et al., 2015). In a qualitative study by Huang et al. (2009), experiences of Taiwanese families who provided long-term care to people with schizophrenia were analyzed. Issues such as care burden, emotional burden, and coping strategies were addressed. In another qualitative study conducted with family members providing care for individuals with bipolar disorder, Jönsson et al. (2011) found that family members continuously supported the individual with mental illness to manage his/her everyday life. However, lack of improvements regarding the illness increased their burden and caused anxiety in terms of how long they could assume this responsibility in the future (Jönssön et al., 2011). In a qualitative study analyzing the experiences of individuals who cared for persons with chronic mental illness in China (Chang & Horrocks, 2006), caregivers mentioned that they experienced difficulties in meeting personal hygiene, treatment, and diet-related needs of their care recipients during the care process. Caregivers also mentioned their experiences of stigma, stating they were ashamed of and angry about the caregiving process and felt stigmatized (Chang & Horrocks, 2006). These studies show that caregivers of people with mental illness face many adversities and experience difficulties during the caregiving process.
Although the caregiving process is difficult, there are outcomes regarding its positive aspects in the literature. In a qualitative study by Lawn, Walsh, Barbara, Springgay, and Sutton (2013, p. 213), caregivers discussed positive outcomes, such as “seeing that they have achieved what they aimed for” and “feeling grateful when everything about the patient goes well.” These quotes indicate how caregivers “grow up with these experiences and become more enduring” and “are more understanding and open-minded” (Lawn et al., 2013, p. 214). In a descriptive study that analyzed the experiences of caregivers of people with a chronic mental illness in 22 countries, 69% of caregivers stated that “they can understand the problems of other people much better,” 54% stated that “they realized their inner strength,” and 62% stated that “they felt more useful” (Vermeulen et al., 2015, p. 27).
After hospitalization, patients return to their homes and family members undertake the responsibility of caregiving. However, most of the time, caregivers' needs come secondary to the needs of the patient (Lawn et al., 2013). Recovery from mental illness can be facilitated and improved with contributions from family members. Focusing on strong aspects, instead of missing or faulty aspects, is an important step toward recovery (Tee, Brown, & Carpenter, 2012). Psychiatric nurses are in a key position to evaluate and identify the needs of each individual and establish continuous cooperation with the family (Bademli & Duman, 2018). It is also important for psychiatric nurses to understand what it means to be a caregiver.
According to results of studies performed in families with individuals with chronic mental illness in Turkey, caregivers' mental status is at risk; however, descriptive studies on burden of disease on families and coping are limited (Duman & Bademli, 2013; Sengün Inan & Duman, 2018). Although many qualitative and quantitative studies on the experiences of caregivers can be found in the literature, no qualitative studies on the experiences of caregivers in Turkey could be identified. Therefore, the purpose of the current qualitative study was to fill an important gap in the literature in terms of the lived experiences of caregivers of people with mental illness in Turkey. Results of the current study are expected to provide guidance for nurses when planning and implementing nursing care, education studies, and comprehensive family interventions to help caregivers of individuals with chronic mental illness.
The Consolidated Criteria for Reporting Qualitative Research (Tong, Sainsbury, & Craig, 2007) guide was used in the current study.
A descriptive qualitative method (Sandelowski, 2000) was used to define/reveal caregivers' perspectives regarding their caregiving experience. A maximum variation sampling method was used to establish a small sample and increase the variation of individuals experiencing the problem of interest (Creswell, 2013; Yildirim & Simsek, 2013). To ensure data variation, the duration of care, employment status, and educational status were used as variable factors.
The study was performed between November 2017 and August 2018 at a university hospital adult psychiatry inpatient unit by two researchers (A.S., Z.Ç.D.). Caregivers of patients hospitalized in the inpatient unit were contacted. Inclusion criteria were age ≥18; primary family caregiver of the individual with chronic mental illness (schizophrenia, schizoaffective disorder, or bipolar affective disorder); and able to read and write. The exclusion criterion was having a disability (e.g., hearing, speaking) that prevented the researcher from holding the interview. Caregivers who met study criteria were interviewed and data were collected. The study sample comprised 16 family caregivers. No individual refused to participate.
Before beginning the interview, the researcher introduced herself, explained the study aim, and obtained caregivers' written and verbal consent. Interviews were conducted by the first author (A.S.). Family caregivers' data were recorded on the Case Report Form and Caregiver Characteristics Form before the interview started. The Caregiver Characteristics Form was used to obtain caregivers' demographic characteristics. A semi-structured interview guide was prepared based on the literature. Interview questions included:
- What kind of experience is it to be a family caregiver of a person with chronic mental illness?
- How does being a caregiver of someone with chronic mental illness affect your life?
- What are the situations you struggle with when providing care for your relative with chronic mental illness?
- If you likened being a caregiver to a concrete object, what would it be? Why?
The last question is a metaphor. The essence of the metaphor is to understand and experience something for one thing in terms of another. Basic values are consistent with the metaphoric structure of a culture (Lakoff & Johnson, 2003). Therefore, this question was meant to capture caregivers' experiences within a cultural context and clarify the meaning of those experiences.
Interviews were recorded using a voice recorder. Before beginning the research, a pre-practice interview was performed with two family caregivers, and qualitative feedback regarding the interview was obtained from an expert researcher. These interviews were not included in the study. After feedback was obtained, data collection began. Interviews lasted for a minimum of 18.36 minutes and a maximum of 55.05 minutes. Field notes were made during the interview. The researcher conducting the interviews shared the field notes with the other researcher after each interview. Notes were recorded in the interview transcripts and included in the analysis process.
Data obtained on the Caregiver Characteristics Form were evaluated using numbers, percentages, and mean values. Data from the interviews were evaluated using qualitative content analysis. In the content analysis, data were processed to obtain concepts and themes (Yildirim & Simsek, 2013). This analysis was repeated using MAXQDA (2018 trial version). The researchers participated in various training to reliably and correctly manage the qualitative research process.
In-depth data were collected and when no new themes emerged, the interviews were discontinued. No participant was contacted prior to the interview. The variation method was used to establish credibility. In each stage of the study, expert assessment was obtained. After the interviews, meetings were held with the expert to analyze the interviews. The purposeful sampling method was used for sample selection. Except for the researchers and participants, no third party took part in the research. Data were presented verbatim according to participants' responses with no additional comments (Yildirim & Simsek, 2013). Interviews were conducted by the same researcher; however, interviews were coded by both researchers and compared to check for consistency. After the coding process was finished, codes and randomly selected expressions from the interviews were sent to five experts and consistency assessment was performed using the Kappa test (Burla et al., 2008). Consistency was calculated as 1.00 and absolute agreement was attained. To ensure confirmability, the confirm-ability analysis principle was used. An expert analyzed and evaluated the attained judgment, interpretation, data, and codes. All documents and records collected during the process were kept so that they could be analyzed when required (Yildirim & Simsek, 2013).
Written permission was obtained from the University Hospital Non-Interventional Research Ethics Committee. Necessary institutional permissions were obtained from the institution where the research was conducted. The aim of the study was explained to family caregivers meeting the research criteria and their informed verbal and written consent were obtained.
Mean age of participants (N = 16) was 57.18 years (SD = 10.75 years; range = 33 to 80 years). Mean duration of care was 16.9 years (SD = 13.9 years; range = 2 to 44 years) (Table 1). Three themes emerged from the interviews regarding caregivers' experiences: Illness Management, Caregiver's World: Changes and Effects, and Coping From the Caregiver's Point of View (Table 2).
Descriptive Characteristics of Family Caregivers (N= 16)
Themes Obtained from the Experiences of Family Caregivers
Theme 1: Illness Management
This theme includes difficulties experienced by caregivers regarding symptom management and the health care system. Caregivers experienced serious difficulties in controlling illness symptoms. Among the issues stated were the management of self-harm, management of harming the environment/aggression, and noncompliance with treatment. Regarding experiences of harming the environment, one caregiver stated:
For example, he broke my nose. He broke her mother's ribs. But he doesn't use [a] knife, for example, hasn't done that. He takes a knife, for example, and throws it like that, from a distance.
During the treatment process, caregivers faced certain problems regarding the health care system. Caregivers stated that they could not get sufficient information from health care providers, and that they experienced difficulties arising from the system itself:
I mean, the degree of the shortcomings, you observe every aspect, you observe the morning meetings or observe the patients based on the scale you have, you observe the patient relatives. So, how am I supposed to know what kind of contribution I should make to the patient that I am providing care for? Am I supposed to study medicine? I should obtain specialty. I need to become a specialist on the subject. I mean, we are not prepared for any of these. Not at all.
Theme 2: Caregiver's World: Changes and Effects
The sub-themes related to this theme were Changing Lives and Relationships and The Effects of the Caregiving Process. Parallel to the role of caregiving, changes occurred in caregivers' lives and relationships, such as not being able to make time for themselves, losses (i.e., patient no longer the same as the person they once knew), stigmatization, and having to carry on relationships in accordance with the patient's condition.
A caregiver stated the following to indicate that she could not make enough time for herself:
…I want to make time for myself, too. I cannot make time for myself, my child. This is a problem. If I want to stay up late at night…I mean the noise, I cannot do it. It's like, it's a summer night, I should go to bed early so that there is silence and “F” can sleep.
Caregivers explained the caregiving process as a burden and struggle. One caregiver explained caregiving as follows:
What does it resemble in life? I mean it resembles a donkey. Yes. It will be constantly loaded but will not say anything, because it cannot say anything. The most it can do is to give a saddened look with its beautiful eyes. That's all. I mean its eyes are always sad; donkeys have the world's most beautiful eyes. But it is always sad, always destitute. Because it always carries a load.
Another caregiver stated her perception regarding the caregiving process as follows:
I compare it to wild waves. Because it is like dealing with the waves. You know, you try to swim in the wavy sea. Living with “E” is like so. Wave is a direct wave, like a sea wave. It is not something small, it is a wild wave. Of course, you fight with it and face the danger of drowning. I mean we face this. We're trying to swim; we're trying to save ourselves.
The caregiving process affected caregivers physiologically, psychologically, and financially. Physiological problems mentioned by caregivers were sleep and immune system issues; costs of treatment and patients' personal spending were financial problems. Psychological effects included anger, sadness, loneliness, self-blame, accusation, fear, anxiety, not enjoying life, and exhaustion. One caregiver stated the following to indicate why she did not enjoy her life:
I mean...I do not enjoy anything in the world. No effort. I mean, before this, I used to try, like, let's make a home, make a place. But now I do not think about today or tomorrow. I used to think about these before. When I was young, I wanted a home, a place. Let's buy something. Let's do something...I mean I used to aspire, but I do not at all. You do not enjoy living, traveling…
Aside from these negative effects, some positive psychological effects of the caregiving process were also identified. One caregiver stated his thoughts on the positive change in his relationship with his wife as follows:
We never had big arguments over small things in the beginning, but we used to have small arguments. Now, even the small arguments do not occur. If she gets angry, I know the reason is this. If I get angry, she knows the reason is that. So, we remain silent. So, it remains single-sided. It remains a monologue.
Theme 3: Coping From the Caregiver's Point of View
Coping behaviors of caregivers included seeking professional support, obtaining social support from people in their environment, spirituality, distraction, isolating oneself from others, emotion- and problem-oriented coping methods, and ineffective coping methods. One caregiver commented on social support:
Neighbors, may God bless them, say that if I need a car or if something happens that require emergency, because I do not own a car, they say that I should not feel shy and should ask them for help and that they will readily provide me with the car.
One caregiver stated that she was also trying to cope by getting professional support:
Here I am, getting psychiatric support to help my son so that I do not become a mother crying all the time. I use medication.
Caregivers also used spiritual coping methods:
…Yet I try to stand on my feet. I try to hold on to life. I hold onto my faith.
Emotion-oriented coping was another method used by caregivers during the coping process:
I cry very often now. I cry so much. I've been so tired. I mean, when someone touches me, I cry immediately. I cannot be happy. My dissatisfaction increased.
Caregivers also used self-harm, an ineffective coping method. One caregiver stated her own experience during the coping process as follows:
I've been biting my hands for 2 years. When I get angry, when I get nervous. I mean, I bite my hand, you know. Right, it is not normal. Our reactions have changed; with “E” we could not remain normal.
Based on the results of the current study on family caregivers' experiences, three main themes emerged from the data.
Theme 1: Illness Management
Participants who cared for individuals with chronic mental illness stated that they had significant difficulties when faced with disease symptoms and their management. These difficulties included self-harm behaviors of both patients and caregivers, harming the environment, and treatment non-compliance. The literature states that individuals with mental illness display violent behaviors toward their relatives rather than others (Kageyama et al., 2016). A study conducted in 22 countries on the experiences of caregivers of people with serious mental illness indicated that one in four caregivers who provided care for patients with schizophrenia were afraid that the patient would harm them (Vermeulen et al., 2015). Caregivers participating in the current study stated they had difficulties coping with aggressive behaviors and noncompliance with treatment. One of the most problematic behaviors among disease symptoms for caregivers is self-harming behavior in the patient (Prabhu & Prakash, 2011). Depressive mood is seen more frequently in caregivers of patients who have suicidal thoughts and depressive symptoms (Chessick et al., 2009). The current study results suggest that caregivers in Turkey experience significant problems in managing illness symptoms and need support. Therefore, individual or group interventions targeting families are needed, and psychiatric nurses should take part in structured family interventions, such as psychoeducation and counseling in mental health services, that facilitate caregivers' coping with symptoms.
Caregivers of individuals with chronic mental illness experienced difficulties within the health care system, including hospitalization, lack of information, and lack of rehabilitation. According to a literature review by Doody, Butler, Lyons, and Newman (2017), families had difficulty participating in a cooperative decision-making process. Families were not included in the process, felt weak, and were excluded from the care plan. Caregivers stated that they needed psychiatric rehabilitation services for their care recipients, but they experienced difficulties because such services (i.e., family participation) were not included. Therapeutic services help reduce disease symptoms, whereas rehabilitation services contribute to functionality in the real world (Farkas & Anthony, 2010). Psychiatric services in Turkey mainly focus on patient-centered treatment approaches. Studies on the development of these community-based mental health services have just begun, and community mental health centers as psychosocial rehabilitation units have been in service since 2011 in Turkey (Bilge et al., 2016). However, because the centers are relatively new, they provide limited services. One issue is lack of information about community resources, such as community mental health centers, which patients can access upon discharge. Communication does not seem to exist between clinical and community services. Psychiatric nurses could bridge this gap by informing caregivers and patients of these services.
Theme 2: Caregiver's World: Changes and Effects
Individuals who care for patients with chronic mental illness experience changes in their lives, such as the virtual loss of a loved one, having to give priority to the patient, not being able to make time for themselves, stigmatization, social isolation, and having to control the patient's behaviors. One of the important changes that caregivers experience is the virtual loss of a loved one, meaning that although the person is still alive, he/she is no longer the same person, which leaves caregivers in a complex mourning process. Chang, Huang, Cheng, and Chien (2018) associated chronic grief with multiple losses. Losses that caregivers experience are compared to “scars that never heal” (Chang et al., 2018, p. 282). Caregivers note that with the role of caregiving priorities in their lives have changed. Caregivers cannot make enough time for themselves and push their needs to the side. In a qualitative study with caregivers, caregiving was found to be at the center of their lives (Quinlan, Deane, & Crowe, 2018). This finding is an indicator of the importance of recognizing caregivers' needs as well as those of the individual with mental illness.
Caregivers of individuals with mental illness experience stigma due to the psychiatric diagnosis, thus making it difficult to receive support (Chang & Horrock, 2006; Sengün Inan & Duman, 2018; Tan et al., 2012). Stigma due to mental illness is an experience that manifests itself with shame, social isolation, and negative comments and affects caregivers significantly (Shamsaei, Mohamad Khan Kermanshahi, Vanaki, & Holtforth, 2013). Caregivers may have the perception that if they constantly control their family members with mental illness and support their needs, patients will be able to control their own lives (Jönsson et al., 2011). However, this controlling behavior can also be a sign of caregivers' poor coping ability (Hogan & John-Langba, 2016). This controlling attitude reinforces the caregiver's belief that the patient is dependent on him/her and causes him/her to worry about what the future of his/her patient will be if something occurs in the future that prevents him/her from providing care (Jönsson et al., 2011).
The journey of caregiving causes a change in the emotional balance of the caregiver (Miller, 2017). Fear, anxiety, anger, and loneliness are some of these changes. A study in which caregivers' experiences were investigated yielded results indicating how anxious and depressed caregivers were during their experiences (Vermeulen et al., 2015). In another study, stress, anxiety, and negative emotions were listed as emotional difficulties of caregivers (Knock, Kline, Schiffman, Maynard, & Reeves, 2011).
Individuals who provide care to someone with chronic mental illness are affected physiologically as well as psychologically. In the current study, caregivers reported sleep problems. Gupta, Isherwood, Jones, and Van Impe (2015) compared caregivers of patients with schizophrenia in five European countries with caregivers of patients with other chronic illnesses (e.g., Alzheimer's disease, cancer) and found that caregivers of patients with schizophrenia were more likely to have insomnia than caregivers of individuals with other illnesses.
Economic impact was another issue that affected caregivers. Economic problems can occur due to financial issues related to the chronic characteristics of the disease and treatment process (e.g., high drug prices, lack of health insurance for some patients), as well as excessive spending by the patient (a symptom of bipolar disorder and schizophrenia). Economic problems faced by caregivers suggest that there are no regulations for mental illness in the health care system, such as legal regulations regarding health insurance, drug supply, and employment of patients, as well as economic aid for families. These findings indicate that psychiatric nurses' and other mental health professionals' assessment of the family situation and available nursing care is an integral part of providing support.
The results of the current study also demonstrated some positive effects of the caregiving process. In a qualitative study by Veltman et al. (2002), caregivers expressed their satisfaction with the care they provided to their patients. They stated that although they got tired during this process, they grew stronger due to its positive contributions. Thus, psychiatric nurses should focus on these positive aspects rather than the negative ones, such as suffering and weakness. Psychiatric nurses should plan interventions that will help caregivers cope with these changes and circumstances in which they feel weak or unsupported. Moreover, these interventions should also be performed in clinical and community mental health services.
Theme 3: Coping From the Caregiver's Point of View
Coping methods of individuals providing care for patients with mental illness included receiving social and professional support, spiritual coping, emotional- and problem-oriented coping, and self-harm. In a family-oriented approach, nurses play an important role in developing and improving the coping skills of the family. Spiritual coping is defined differently in various cultures. In the current study, caregivers used spiritual coping that involved believing in the presence of a creator, God, and praying to Him. Spiritual belief systems have an important role in helping caregivers maintain hope in the coping process. Similar findings were obtained in a qualitative study by Iseselo, Kajula, and Yahya-Malima (2016) in which psychosocial problems experienced by caregivers of individuals with chronic mental illness and coping skills were assessed.
Caregivers also used emotion- (e.g., crying, avoidance) and problem-(e.g., problem solving) oriented coping skills. One caregiver stated that he isolated himself from others as an emotion-oriented coping mechanism. Avoidance, one of the most commonly used coping skills, was also noted in a descriptive study of coping skills of psychiatric patients treated in acute inpatient wards (Eaton, Davis, Hammond, Condon, & McGee, 2011). Avoidance-type coping skills were found to be positively correlated with burden (Chadda, Singh, & Ganguly, 2007). In the current study, caregivers resorted to self-harming behavior, which is an ineffective coping method. Additional ineffective coping skills include overeating, alcohol use, and smoking (Huang, Sun, Yen, & Fu, 2008). Health professionals should be aware of caregivers' coping mechanisms and use a personalized approach when assessing these behaviors.
The current study has some limitations. Due to the qualitative research design, the results cannot be generalized to all caregivers. In addition, mostly women were interviewed, because in Turkish society caregivers of patients with mental illness are generally women. Therefore, the number of caregivers who were mothers was higher than the number of other types of caregivers.
Conclusion and Implications for Nursing Practice
Caregivers of patients with chronic mental illness are on a strenuous journey during which they face many difficulties. These difficulties and experiences indicate that psychiatric nurses and other mental health professionals should cooperate with family members by involving them in the treatment and rehabilitation process. Family-oriented programs should be developed according to caregivers' experiences and include content related to stigmatization, care burden, illness symptoms, and coping with difficult behavior. In Turkey, there are significant shortcomings regarding the inclusion of families in the care and treatment process in mental health services. Therefore, it is recommended that future studies identify barriers that hinder cooperation with the family in the provision of mental health services in the Turkish community.
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Descriptive Characteristics of Family Caregivers (N= 16)
|Participant No./Sex/Age (Years)||Educational Background||Employment Status||Duration of Caregiving (Years)||Degree of Kinship||Lives With Patient||Family History of Chronic Mental Illness||Patient Diagnosis|
|6/F/55||University||Unemployed||28||Spouse||Yes||Yes||Bipolar affective disorder|
|10/F/61||University||Unemployed||30||Sibling||No||No||Bipolar affective disorder|
|11/M/62||University||Unemployed||8||Spouse||Yes||No||Bipolar affective disorder|
|14/F/50||High school||Unemployed||6||Mother||Yes||No||Bipolar affective disorder|
|15/M/49||Primary school||Employed||3||Father||Yes||No||Bipolar affective disorder|
|16/F/59||Primary school||Unemployed||10||Mother||Yes||Yes||Bipolar affective disorder|
Themes Obtained from the Experiences of Family Caregivers
|Self-harm||Difficulties regarding illness management||Illness Management|
|Non-compliance with treatment|
|Hospitalization||Difficulties regarding the health care system|
|Problems in the health care system|
|Difficulties regarding the rehabilitation process|
|Inability to feel the patient's presence/loss||Changing lives and relationships||The Caregiver's World:Changes and Effects|
|Not taking time for oneself|
|Concern about the future of the patient|
|Burden of care|
|Psychological effects||Effects of the caregiving process|
|Spiritual coping||Coping from the Caregiver's Point of View|
|Getting social support|