Abstract
Background:
One in four families has at least one member with a mental disorder and families are the main caregivers in most patients in low and middle-income countries. Caregivers experience disruption in their routine lives, increased responsibilities, increased need for support, and changes in their network. The role of personal support networks in the health and burden of the caregivers is complex and depends on the context, cultural and socioeconomical variables. In this study, we aimed to investigate the personal support network of caregivers of patients with severe mental illness in Iran.
Methods:
By using a mixed-methods design, we focused on the structure and composition of caregiver networks, as well as self-perceived caregiver support.
Results:
We found that the support network of caregivers was mostly composed of immediate family members whom themselves were selectively chosen as a result of the multidimensional process of interaction between stigma, availability, and the perceived needs of caregivers. The participants mentioned economic and instrumental supports more frequently than emotional support, probably reflecting their unmet basic needs. Advocacy for providing formal systemic supports to caregivers, as well as interventions that expand caregivers personal support network is recommended.
Conclusions:
Most participants of the study were relatively isolated and had a small network of support, mostly composed of immediate family members. Stigma was a serious source of family distress for caregivers and a limiting factor in social relationships.
Introduction
One in four families has at least one member with a mental disorder (Department of Mental Health and Substance Dependence, 2003). Mental disorders are among the major contributes to the disability-adjusted life-years (DALY) burden globally (Vos et al., 2020). In the latest national survey in Iran, 23.6% of the general population aged 15 to 64 years met the criteria for having at least one Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) psychiatric disorder in the past 12 months (Sharifi et al., 2015). The majority of the individuals with mental disorders live with their families in the country, and families are the main caregivers in most cases, similar to other low and middle-income countries (Mottaghipour & Tabatabaee, 2019).
Transition into the caregiving role substantially affect the lives of the main caregivers. Caregivers experience disruption in their routine lives, increased responsibilities, increased need for support, and changes in their networks (Pescosolido et al., 2011; Roth, 2020). Numerous studies assessed the burden of caregiving in chronic illnesses and mental disorders (Baronet, 1999; Lefley, 1996; Ohaeri, 2003). Caregiving has been associated with adverse effects on the caregivers’ quality of life and general health (Del-Pino-Casado et al., 2021; Ho et al., 2009).
Social support is one of the significant predictors of caregiver burden (Rodríguez-Madrid et al., 2018), in addition to sociodemographic characteristics of both the patients and caregivers and the patients’ clinical status (Magliano et al., 2003). The caregiving process happens in social networks where multiple individuals interact, share information and advice, provide support or harmful content. Caregivers with supportive networks experience less burden than those with less supportive or less connected networks (Roth, 2020). Moreover, caregivers with large and supportive networks have a more positive attitude toward schizophrenia while experiencing less burden (Magliano et al., 2003).
Social networks most often have been assessed quantitatively concerning the structure, such as the network’s size. The quality of the relationships in the context of caregiving social networks has been less studied. Limited studies have shown that increased network size does not necessarily improve burden, and the complexity and involving more players in caregiving may associate with an increased burden (Wittenberg-Lyles et al., 2014). In other words, the role of personal support networks in the health and burden of the informal caregivers is complex and depends on the context, the characteristics of actors involved, and cultural and socioeconomical variables. For instance, family members of individuals with mental illness usually experience stigma and choose different coping mechanisms, such as strategic disclosure or secrecy (Corrigan & Miller, 2004; Östman & Kjellin, 2002; Serchuk et al., 2021).
In this study, we aimed to investigate the personal support network of caregivers of patients with severe mental illness in Iran. By using a mixed-methods design, we focused on the structure and composition of caregiver networks, as well as self-perceived caregiver support. Considering the participants’ geographic location, culture, and social context, the present study may improve knowledge on the caregiving condition and challenges, particularly in mental disorders.
Methods
Sample and recruitment
This study was carried out in 2018 and 2019, recruiting 32 primary caregivers of patients with a severe mental disorder in Roozbeh Hospital, an university psychiatric hospital in Tehran, Iran. Thirty-two caregivers were included in this study. The participants were recruited through a convenient sampling method. Potential eligible cases were identified and contacted by researchers through reviewing the hospital records of currently admitted patients.
The primary caregiver was defined as a person from the patient’s support system most responsible for taking care of the patient and unpaid. The inclusion criteria were as follow: (1) a diagnosis of schizophrenia, schizoaffective, or bipolar disorder of the patient, (2) more than the 2-year duration of the illness, (3) psychiatric admission within the past month, (4) patient’s and caregiver’s age range within 18 to 65 years. The cases were excluded if the patient or the primary caregiver had a borderline or impaired intellectual ability or the patient had a comorbid substance use disorder. If meeting the eligibility criteria, the aims and details of the study were explained to the primary caregiver before taking the informed consent.
Data collection
Sociodemographic data of patients and caregivers were obtained through a questionnaire. An in-depth semi-structured interview was conducted by trained physicians not involved in patient care. Through the interview, we aimed to picture the personal social network of the caregivers, supporting him/her with the patients’ care, and their perceived support and barriers to support. Interviews were voice recorded and transcribed for analysis.
The interviewer guided the caregiver to map his or her personal network using a network chart (Hollstein et al., 2020). The caregiver compiled a list of individuals in their support network and distributed them in the chart according to their social roles (family members living together, family members not living together, distant family members, neighbors and co-workers, friends, health providers, and others) and importance (in different areas of the chart consisting of three concentric circles) (Pahl & Spencer, 2004). Next, the availability of network members and their responsiveness to the caregiver’s needs were questioned. Lastly, caregivers were asked about perceived support, challenges, and unmet needs regarding their caregiving role.
Data analysis and interpretation
A mixed-methods approach was applied to interpreting network maps (Yousefi Nooraie, Thompson et al., 2021). This approach uses an inductive and exploratory technique to interpret the meaning of the network maps iteratively. It has been used to study patients’ and caregivers’ support networks in other contexts (D’Silva et al., 2021; Yousefi Nooraie, Mohile et al., 2021).
Descriptive analyses of the demographic, clinical, and network characteristics were conducted using Stata statistical software (StataCorp, 2013). Network maps were generated based on force-based algorithms using UCINET64 software (Borgatti et al., 2002). We analyzed qualitative interviews using a grounded theory approach (Walker & Myrick, 2006) to develop a conceptual model for the dynamics of support and their embeddedness in caregiver social networks. We compared qualitative themes and network maps between caregivers using a constant comparison technique (Kolb, 2012). The mixed-methods analysis of network maps and qualitative transcripts was completed by two members of the research team (MT, RYN).
Results
Thirty-two caregivers were included in this study, of which 12 were mothers, eight siblings, seven spouses, three children, one father, and one was another relative. The mean age of caregivers was 47.0 years (standard deviation (SD): 11.5), and 87.5% were female. Overall, 87.5% of caregivers lived with the patient. On average, caregivers spent 11.7 hours (SD: 9.9) with the patient during the day. Table 1 presents demographic and socio-economic information of caregivers.
Demographic characteristics of the caregivers.
Among the patients, 68.8% were female, and their mean age was 40.5 years (SD: 12.9). Of them, 40.7% were single, and 62.5% were unemployed. The mean age of illness onset was 18.8 years (SD: 9.8), and the mean number of psychiatric hospitalizations was 4.2 times (SD: 4.6) in a lifetime. Other demographic information of patients is described in Table 2.
Demographic and clinical characteristics of the patients.
Caregivers and the selectivity of support
Our findings show that people are selective in the types of support they seek and individuals who can potentially provide that kind of support.
Reasons for selectivity of source of support
Stigma
Family members tend to be secretive about the mental illness or patient’s behavior, so they reduce their social interactions. We were able to identify two types of stigma in caregivers. Perceived stigma is the result of one’s belief about others’ attitude as expressed by caregiver 1 (cg 1): ‘She would lose face if neighbors know about her hospitalization’., or (cg 32): ‘We don’t usually say he is sick, because they [cousins] no longer accept him’. However, a few caregivers also experienced enacted stigma, in the form of rejection by the social network, as expressed by cg 30: ‘We turned to his uncle a few times to take him to work, but they did not want him because he is sick’.
There is clearly a dichotomy between kin-based and non-kin relatives in terms of the perception of support. This dichotomy is intertwined with the concept of stigma. The main reason for rejecting support from an individual or a group is the stigma: ‘If they help, they will say it to everyone, and they judge’ (cg 2). Non-kin relatives are often assumed to be strangers and removed from the support network. In many cases, the in-laws are not informed about mental illness to avoid stigma. Cg 30: ‘Everyone knows, but I don’t like them [in-laws] to see her behavior’.
Friends, co-workers, and neighbors play a minimal role in the support system of the caregivers. Again, stigma toward mental illness is in part accounted for the limited relationship with these groups. For example, cg 24 expressed: ‘We called the emergency service to take her to the hospital, so our neighbors found out. Then one day, my son came home crying because other kids said bad things about his mother. They are good neighbors, they lend us money, but I cut the relationship since then’.
Perceived stigma was more prominent when the patient was a woman, as families were more likely to hide the illness or illness-related behaviors. As an example, caregiver number 29 was a mother who was worried about the future of her daughter, especially about her chance for marriage. She mentioned several times that if the patient was male, ‘It wasn’t that bad’.
Protection
The second reason for selectively skipping over a person is protecting her/him. Specifically, mother caregivers were concerned about other children and try to protect them from the burden of the mental illness in the family, as expressed by cg 1: ‘Her sister has to get on with her life. I don’t ask her help; her life should not be ruined’.
We realized unique dynamics of caregiving when the caregiver is a mother, as they took extra responsibilities to maintain the social image of their sick child as well as protecting other family members; as mentioned by an interviewee (cg 11): ‘Mother is the center of the circle in the family’. On the one hand, mothers more prominently felt the need to protect other children from the burden of caregiving and the stigma of mental illness. They were also concerned about how mental illness might affect the future of the patient, as cg 3 expressed: ‘I wish there were someone reliable who could take care of her after me. . .I often think about what happens to her after our death’.
Reciprocity
In addition to the stigma and protection, some caregivers preferred not to be seen as a burden to others; or they avoided pity and being under an obligation to reciprocate somebody’s favor. One caregiver (cg 31) expressed this as: ‘I don’t want help; it is not worth it. . . You know, they made you feel beholden with them’.
Usefulness
In some cases, network actors were excluded from the support network because the caregiver believed they could not help. Cg 13 frequently expressed her disappointment from the helpfulness of others: ‘What can they [neighbors and friends] do?. . . nobody could help’.
Selectivity of types of support
Caregivers reported various types of support such as financial (e.g. assistance in healthcare cost, lending money); instrumental (e.g. transport to the hospital, helping in everyday chores and childcare); and emotional support (e.g. sympathy, guidance, problem-solving/decision making).
The perception of support tends to vary in caregivers. The participants usually mention more objective types of support, such as instrumental or economic support, while emotional support was not in their initial list of support types. When asked about the support they received, a few caregivers mentioned emotional support, only after giving a prompt by the interviewer. For example, when asked about sources of support, one caregiver (cg 31) mentioned her husband as influential because ‘he called the emergency service the other day and helped [caregiver] bring [the patient] to the hospital’.
When asked ‘what kind of support do you need?’, they often express a desperate need for the patient’s cure or a solution for the patient’s inappropriate behavior or the illness. This demand does not seem to include the need for information or family empowerment but rather a magical way to cure the illness. They used keywords that implied they expected a complete cure in a short time. In other words, their image of mental illness is similar to an acute illness. For example, one caregiver (cg 13) mentioned: ‘I still hope to wake up one day, and he will be fine’, or as expressed by another caregiver (cg 1): ‘We need a good medicine that works. . .or someone tells us what to do to make her normal’.
Regarding the types of support, positive and negative contents can exist simultaneously in a relationship with a given individual. As expected, a network member may provide support in a specific aspect and refuse to support in a different aspect. For example, a family member who supports financial issues might be rejecting when psychological needs arise. For example (cg 29): ‘His father is by my side all the time, takes us to the doctor, provides everything we need, but he treats our son harshly, and it hurts me a lot. I can’t talk to my husband about him; sometimes I feel very lonely’.
Selectivity of individuals in the network
We analyzed the structural patterns of caregivers’ social networks using a mixed-methods approach which is described elsewhere in detail (Yousefi Nooraie, Thompson, et al., 2021). Overall, we found that the majority of support networks were loosely connected and predominantly involving family members as only or the main sources of support. For the majority of caregivers, the most important source of support was a family member, as reflected by the percentage of respondents who identified family members in their inner circles as well as their overall network (Table 3). Thirty-one out of 32 participants mentioned at least one family member in their support network. The small frequency of other social roles (e.g. friends, neighbors, colleagues) implies that if a caregiver did not receive enough support from family members, the support would not usually be compensated with other social groups.
The composition of caregivers’ support network.
Most individuals in support networks were family members who did not live with a caregiver. However, non-kin relatives of the patients and in-laws are often assumed to be strangers and removed from the support network.
An example of a cohesive family-dominant network is case number 11. The caregiver is the patient’s brother. Mother and father were at home and supportive, and other family members such as sisters, and aunts had a specific support role in the patient care. The network is only comprised of a very well connected family members who are also close to the respondent (Figure 1a).
Four examples of the caregivers’ personal network map and their aggregated forms. For each network, left map shows the actual presentation of network chart as developed by caregiver; right map shows the aggregated map based on social groups, with arrows representing the frequency and strength of connections between each social group and ego. (a) Family dominance, (b) isolated, and (c) isolated, disconnected groups.
Case 12 is an example of an isolated caregiver who was patient’s mother. The caregiver had no siblings, no child other than the patient, and no friend. Even the spouse, who lives with the caregiver, is located at the outer circle of support network (Figure 1b).
Figure 1c (case 31) is an example of a network in which family members exist but were not supportive, as opposed to a cohesive family-dominant structure. An interesting observation that distinguishes this network from previous two examples is that, unlike case 11 (Figure 1a) the family members in the map are not connected and are located at outer circles. Also, despite case 12 (Figure 1b), family members actually exist, but most of network members were not able to help, were not supportive, or excluded by herself. This distinction was not presented only on the map, and was revealed only in the qualitative interview.
Relationship with healthcare providers
The physicians were reported as an important figure in the social network of almost half of the caregivers. They acknowledged the role of the physician in prescribing medication and controlling the illness as significant support. As expressed by one caregiver: ‘No one can help if the doctor does not give medicine and control him’. Surprisingly, healthcare providers did not play a significant role in providing information and support to caregivers. In a few cases, other medical team members such as a social worker or a nurse have been mentioned in the support network of the caregiver.
In cases where healthcare providers were reported in the network, only the primary caregiver was in contact with them; other members of the caregiver’s network (family members) had no or minimal contact with physicians. In other words, healthcare providers usually deal with/contact only one person in the patient’s network.
Discussion
This study examined the support network of primary caregivers of patients with severe mental disorders. Most of the patients and their caregivers belonged to the middle or lower socio-economic class and lived in less privileged areas of Tehran. The majority of caregivers were women, married, and living with the patient. We found that the caregiving network was mostly composed of immediate family members whom themselves were selectively chosen as a result of the multidimensional process of interaction between stigma, availability, and the perceived needs of caregivers. We found that the participants mentioned economic and instrumental supports more frequently than emotional support, probably reflecting their unmet basic needs.
Various studies have shown caregivers of patients with severe and chronic conditions are severely burdened from their caregiving role, and this role triggers significant changes in their social life. The burden of care is more prominent in specific conditions such as mental illness (Hastrup et al., 2011; Rezaei et al., 2020). Caregiving in mental illness is particularly burdensome because of the increased chance of patient’s isolation, incomplete recovery, and stigmatization (Ebrahimi et al., 2018). It has been suggested that social support is one of the main predictors of caregiver health (Rodríguez-Madrid et al., 2018). Song et al. (1997) showed that the most important predictor of the caregiver’s depression was inadequate social support.
In this study, loneliness was an overarching theme in caregiver interviews reflected in the structure and composition of caregiver networks. Participants reported an average of 1.7 persons in their close network and 5.3 persons in their whole network. In other words, most participants of the study were relatively isolated and had a small network of support, mostly composed of immediate family members. The typical size of other social networks and how they change are not clear (Wrzus et al., 2013); however, compared to other studies, our participants reported a smaller number of people in their support network. For example, in the Caregiving Transitions Study, caregivers had an average of 6.3 to 7.3 persons in their close network (Liu et al., 2021). It seems network sizes vary in different contexts, ages, and conditions such as illnesses (Penrod et al., 1995; Roth et al., 2005).
Several studies have indicated that sociocultural context, ethnicity, and family structure largely affect the social relations, stigma perception, and the burden of caregiving (Dalky, 2012; Konerding et al., 2019; Stueve et al., 1997; Valle et al., 2004). Several studies proposed strong family bonding and the extended family network in less industrialized regions with more traditional lifestyles could reduce the perceived burden of family caregivers (Ganev et al., 1998; Naheed et al., 2012; Ohaeri, 1998). Although reliance on family support and having expectations of receiving help from family is a norm in specific cultures, it might be demoralizing and distressing when family members do not fulfill such expectations (Cheng et al., 2013).
Even though we expected caregivers in family-dominant networks to receive more support, the caregivers in this study were relatively lonely and isolated, and the majority of personal networks were small and restricted to immediate family members. This difference can be explained in part by excluding some extended family members, such as non-kin relatives, because of the experience or perception of stigma or the definition of family boundaries. This implies that these individuals live in a sociocultural environment that does not represent traditional or modern stereotypes. In Iran, the rapid transition from a traditional to modern society, especially in urban areas, changed the basic cultural values and social structures, resulting in the formation of a marginalized urban population who lack the usual benefits of urban life while detached from traditional support.
Stigma is a serious source of family distress for caregivers and a limiting factor in social relationships (Girma et al., 2014; Shamsaei et al., 2013; Thornicroft, 2008). The internalization of stigma among caregivers of individuals with mental illness causes negative emotions and withdrawal from social relations (Corrigan & Watson, 2002). Caregivers who have a higher level of affiliate stigma may experience more burden in their caregiving role since stigma could negatively affect the patient-caregiver relationship as well as caregiving appraisal (Mak & Cheung, 2008). Our finding is in line with the Chang et al. study in Chinese culture (Chang & Horrocks, 2006). They reported family members tried to hide their relative’s mental illness with extended family or friends to protect their families from ‘losing face’. Furthermore, Dalky et al. reported having a psychiatric patient in Arab families is associated with negative emotions such as fear, loss, embarrassment, and disgrace of family reputations. Thus, social isolation due to secrecy and stigma might affect families (Dalky, 2012).
The deference to doctors as important persons in personal networks, along with the minor role of other healthcare providers, is another important finding. The physician role in the health system and society in Iran is a traditional one (Kalateh Sadati et al., 2016). Although psychosocial treatments, such as psychoeducation, rehabilitation services, and counseling are available in the hospital, the medical team is still physician-centered. Furthermore, pharmacological treatments are the standard treatment modalities. Moreover, the crucial role of medications in controlling severe psychiatric symptoms may justify the nomination of psychiatrists as authorities and influential persons in the personal networks (Angell & Bolden, 2015).
Recommendations
As proposed by many studies, mental health systems usually ignore the needs and challenges of family caregivers (Ae-Ngibise et al., 2015; Doornbos, 2002; Navidian et al., 2012; Rahmani et al., 2016; Semrau et al., 2016). Since caregiver health is an inseparable part of patient care, health professionals should be trained to identify the caregivers’ challenges, provide culturally congruent care, and empower caregivers with management strategies (Seikkula & Arnkil, 2013; Williams et al., 2008). Family group psychoeducation and self-help groups facilitate network building in family caregivers. Advocacy for providing formal systemic supports to caregivers and easy access to community-based treatments and organizational support is also recommended (Veltman et al., 2002).
Few studies have been conducted to explore effective network-building interventions (Kennedy et al., 2016; van Asselt-Goverts et al., 2018). Informal caregivers of individuals with severe mental illness could benefit from interventions that expand their personal support network. Network mapping alongside goal setting and reflection practices have been used to tackle loneliness in older adults (O’Rourke et al., 2018). Personal network mapping combined with motivational interview might help caregivers to enhance their network and support.
One of the recommended solutions to address loneliness is encouraging participation in person or online family support groups (Panzarasa et al., 2020). Very few studies assessed their feasibility and impact for caregivers to patients with mental illness. In addition, we believe that the majority of caregivers who were represented by the participants of this study lack technological access, digital literacy, and cultural motivation to participate in online social networks.
Strengths and limitations
To our knowledge, this is the only study to investigate the social structure and dynamics of caregiving to patients with severe mental illness from a network analysis perspective. We uncovered and underlined the pervasive loneliness and lack of support of informal caregivers that do not align with normative beliefs about the supportive nature of traditional networks in the Iranian context. We argue that this pattern could be generalized to many eastern societies, where family support is influenced by stigma and blood relations.
The present study has only investigated the perspective of the main caregiver. It may not be consistent among other individuals involved in providing care to the same patient. Since, patients with comorbid conditions such as substance use disorders were excluded from our sample, the caregiving burden and perceived stigma might be different for other caregivers in a real life context. Moreover, the impact of stigma and burden of caregiving might be affected by other confounders such as ethnicity, education level, and other uncontrolled factors. Therefore, the finding might not be transferable to caregivers from different social, cultural, and clinical contexts.
Footnotes
Acknowledgements
We are grateful to all the patients and the family members who participated in this study and shared their experiences and stories with us.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Tehran University of Medical Sciences financially supported this study under contract number 97-02-30-38722.
