|Year : 2019 | Volume
| Issue : 4 | Page : 238-245
Persons with mental illness and their caregivers: What do they think, feel, and perceive about marriage?
Afreenbanu A Khadirnavar1, Raju Birudu2, Sojan Antony1, K Janaki Raman1, A Thirumoorthy1
1 Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
2 Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
|Date of Submission||25-Oct-2018|
|Date of Decision||01-Sep-2019|
|Date of Acceptance||01-Sep-2019|
|Date of Web Publication||15-Nov-2019|
Dr. Sojan Antony
Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru - 560 029, Karnataka
Source of Support: None, Conflict of Interest: None
Introduction: Marriage is an important social institution. It is the basis for the family. The functions of marriage are regulation of sexual behavior, reproduction, nurturance, production of children, and socialization. Stigma associated with mental illness is a major cause for failure of marriage among persons with mental illness (PMI). Perspectives of the PMI and their family members on marriage are not explored in detail. Thus, the current study aimed to explore the perspectives on marriage of PMI and their caregivers. Methodology: Five case studies purposively selected with a significant history of marital failures due to mental illness were analyzed. In addition, three focus group discussions consisting of 17 caregivers were conducted among people who attempted to arrange the marriage for their son or daughter with mental illness. Results: Families experienced major challenges to arrange marriage for PMI; blaming the parents, caregiver burden, reduced social support, and social stigma for the entire family emerged as the major themes. Conclusion: Hence, there is an urgent need to explore the feasibility of psychosocial intervention; focusing on psycho-education on illness, removing myths related to illness and marriage, premarital counseling, and addressing the stigma within the family and in the community are imperative. Psychiatric social workers must take the lead role to address the marriage-related concerns of PMI and their family members.
Keywords: Caregivers, marriage, mental illness, perceptions, person with mental illness
|How to cite this article:|
Khadirnavar AA, Birudu R, Antony S, Raman K J, Thirumoorthy A. Persons with mental illness and their caregivers: What do they think, feel, and perceive about marriage?. Indian J Soc Psychiatry 2019;35:238-45
|How to cite this URL:|
Khadirnavar AA, Birudu R, Antony S, Raman K J, Thirumoorthy A. Persons with mental illness and their caregivers: What do they think, feel, and perceive about marriage?. Indian J Soc Psychiatry [serial online] 2019 [cited 2020 Jan 26];35:238-45. Available from: http://www.indjsp.org/text.asp?2019/35/4/238/271102
| Introduction|| |
Romantic relationship and marital status have generally been associated with the increased physical and psychosocial well-being in adults., Social support mediates the relationship status, single versus partnered, including mental health and mental health problems. In India, it is almost compulsory for every individual to marry and settle down. Marriage, as defined by the Oxford Dictionary, is a formal union of man and woman by which they become husband and wife. It is a consensual and contractual relationship recognized by the law. Marriage is also considered a social commitment to fulfill emotional, social, occupational, and sexual needs in a socially acceptable way.,
Marriage is a stressful event for vulnerable people, which may lead to the development of mental health problems. Similarly, studies report that single individuals are found to have higher levels of depression, anxiety, mood disorders, adjustment problems, psychological distress, and higher rates of alcohol-related problems. Cultural influences such as stigma and discrimination are barriers for individuals for seeking help, applying for work, undergoing training, receiving education, and looking for a close relationship., Lack of social ties, support, and attachment leads to progression of mental illness, poor adjustment, and more distress burst out, which lead to a severe form of illness. Failure to establish and sustain a committed intimate relationship during young adulthood may have serious negative implications for well-being now and later in the life span.,
In the Indian context, most of the time, caregiving is left to family members. Caregiving is a physically and mentally challenging condition. Previous studies showed that severe mental disorders increase vulnerability and cause burden to the family and the society. The nonavailability of mental health services, poverty, superstitions associated with mental disorders, and the inability of families to care their mentally ill relatives appear to be major contributing factors. Stigma, which a family has to bear, is exponentially increasing even within the family; the blame is directed to one another. Financial burden, changes in family dynamics, disruption in family routines, entertainment and communication pattern are high in single individuals with severe mental disorders and in their families of origin. With respect to caregivers, social relationships are inadequate both qualitatively and quantitatively at individual, group, and community levels. As a result, both persons with mental illness (PMI) and their families more often experience loneliness which is again painful., In spite of caregiver burden and day-to-day struggles, caregivers put maximum efforts to increase the social relationships and marital bonding for their loved ones. Very few studies have been conducted to understand the subjective experiences of PMI and their caregivers on marriage. Hence, the present study's objective was to explore the subjective perceptions among PMI and their caregivers on marriage and marital life.
| Methodology|| |
The study used descriptive research design and was conducted in the inpatient care of the Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India. A total of 22 (5 PMI and 17 caregivers) individuals were recruited purposively.
Adult persons suffering from severe mental illness, those who had a history of marriage rejection or proposals, those who had marital disputes or separated or divorced due to severe mental illness, and those whose patient's cognitive functions were intact were invited to participate in the study.
With respect to caregivers, primary caregivers who were providing care for PMI for more than 2 years, those who had involved in arranging marriage proposals, and those who had witnessed failure of marriage proposals and marital disputes for their son or daughter due to severe mental illness were asked to take part in the study.
All the recruited cases were referred for psychosocial need assessment and psychosocial care during inpatient care as a routine clinical care. While conducting psychosocial need assessment, one of the concerns, which was consistently expressed by PMI and the caregivers, was issues related to marriage. These concerns formed interest in psychiatric social work trainees (PSWTs) to explore the selected variable in detail clinically in a systematic manner.
At the outset, the primary author interacted with PMI and their caregivers and checked their willingness to share their views on marriage. PMI preferred to share their views privately in the absence of their caregivers and family members. With respect to caregivers, psychiatric social workers (PSWs) and PSW supervisors decided to conduct focus group discussions (FGDs) with the caregivers to capture the heterogeneous views on the selected topic and to save the time. Caregivers also agreed for the same. Therefore, it was felt that in-depth interviews and FGDs were suitable techniques for data collection, following which PMI and caregivers who speak vernacular language (Kannada) were invited to participate in the in-depth interviews and FGDs subsequently. In addition, participants who expressed their willingness to share their feelings and experiences on marriage were informed about the time and venue for in-depth interviews and FGDs priorly.
Five in-depth interviews were conducted with PMI who participated voluntarily. In-depth interviews are useful to collect detailed information about a person's views and explore perspectives with a small number of respondents about a particular objective or idea or situation. The following interview questions were used in the in-depth interviews.
- How do you feel about your marital life?
- What are the reasons for your disturbed marital life or being unmarried?
Focus group discussions
In the present study, FGDs were used to collect caregivers' personal views and reasons for rejection of marriage proposals, marital disputes, or broken marriage of their son or daughter. FGDs are often used as a quick and convenient way to collect data from several people at a time. This method encourages the researcher asking each person to respond to a question; in turn, people are encouraged to talk to one another by asking questions, exchanging anecdotes, and commenting on each other's experience and points of view., Three FGDs were conducted with caregivers. These groups were facilitated by trained PSWTs and PSWs in FGDs as well as social group work method. Each group consists of 4–8 members guided by structured interview guidelines. The following questions were used across groups to maintain consistency in the data collection:
- As a caregiver, would you explain, what are the difficulties that you have faced and techniques used in order to strengthen the marriage or marital life of your son or daughter?
- Do you have any concerns to discuss about your son/daughter or yourself?
Focus group discussion process
Before starting the session, the group's facilitator (PSWT) introduced herself to the group members. A platform was created for the group members to introduce oneself to each other, following which the purpose, importance, and objective of the study were introduced. In addition, the facilitator informed that the participation was voluntary. She also asked oral permission to record the verbatim responses of the participants. Majority of the caregivers agreed to record their responses. All the responses were documented in the summary form in the vernacular language under the supervision of the PSW manually. Three participants were not interested to participate in the group discussion due to personal reasons such as purchase of medication for their loved ones and accompany the patient in ward rounds conducted by the psychiatrist. Thus, those three participants were excluded from the study. FGDs were continued with the rest of the members. Each group lasted for 30–45 min. The group member's interaction is explained in [Figure 1]. Verbal consent and feedback from each participant were received after in-depth interviews and FGDs. Data saturation was ensured.
|Figure 1: Group members' interaction during focus group discussion. P = Participants (1 to 8) F = Facilitator. Person: Caregivers of persons with mental illness. Problem: Perceptions on broken or rejection of marriage proposals or unmarried due to mental illness. Place: Environmental disturbance-free room in the ward. Process: Focus group discussions in which everybody was given equal importance and chance to express their views, and their participation was valued|
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In addition, based on the information collected and feedback received from in-depth interviews and FGDs, social analysis and social diagnosis were derived by using the bio-psychosocial model (BPS). The BPS model proposes that in addition to biological factors, psychological factors such as thoughts, emotions, behaviors, and social factors such as socioeconomic, socioenvironmental, and cultural factors contribute to illness and illness behavior., [Figure 2] depicts the social analysis and social diagnosis.
Thematic analysis (Braun and Clarke, 2006) was used to analyze the verbatim data., In the process, summaries of in-depth interviews and FGDs (verbatim Kannada language) were transcribed and translated into English in the word.doc. The translated word documents were uploaded in the R QoL software (R QOL, 3.0.2 Freedom Foundation, USA, 2012). Two PSWs read and re-read the summaries of the verbatim illustrations and became familiar with the data collected from in-depth case interviews and FGDs. Then, the codes were generated, discrepancies on coding between PSWs and clinical supervisors were sorted out. The next step was searching for themes, re-reviewing the themes, defining and merging the themes carefully. Adding to that, PSWT and PSWs clinical observations, daily notes, caregivers' feedback and nonverbal language was carefully merged to the bring context. Four themes emerged out of the qualitative data.
Further, the current work was done as the part of day-to-day clinical psychosocial care practice by the primary author who is a student of M. Phil in psychiatric social work. These data were collected as part of routine clinical care. Identifiable information of the participants was not included in this report. Thus, no formal ethical clearance was obtained from the institute. Considering the importance of the issue, this brief report was prepared to facilitate clinicians to address marriage-related experiences of persons living with mental illness and their caregivers in routine care.
| Results|| |
The results showed that five persons who were suffering from schizophrenia and bipolar affective disorder, aged between 36 and 42 years, participated in the study. Of which, three people belong to Hindu religion and two people belong to Muslim religion, two people were currently separated from spouse, two were divorced, and one was unmarried. The illness duration ranged from 5 to 12 years.
In addition, 10 male and 7 female caregivers, aged between 39 and 61 years, participated in the study. Of which, 7 were fathers, 8 were mothers, and 2 were brothers who took the caregiving responsibility and provided care from 4 to 12 years. [Table 1] depicts the demographic details of the study participants. The results also showed that majority of (n = 5, 100%) the PMI were not happy with their marital life as well as their caregivers (n = 17 100%). Only three PMI wished to marry (60%) and only seven caregivers (41.2%) wished their son or daughter to get married. [Table 2] depicts the feedback from the participants on marriage. The following four themes were derived from the in-depth case analysis and FGDs:
- Unhappy regarding own marital status and marital life
- Blaming caregivers for remained unmarried and broken marriages
- Caregivers' difficulties to arrange the marriage proposal and strengthen the marital relationships
- Caregivers' apprehensions about future marital life of their loved ones.
Unhappy regarding own marital status and marital life
Unsatisfied marital life was one of the main concerns for PMI. Frequent rejections of marriage proposals for unmarried individuals with mental illness, spouses' anger outburst toward each other, marital disputes, and separation from spouses were the main reasons for unhappy marital status and marital life.
“I am not married, struggling to search pair for me but people are not ready to marry me; I feel that my life is worthless.”
“Just because I am taking medicine, my wife is not with me. I am still struggling with court process….”
“My husband said that ”I am mental and he should not have married me.“ He used to call me mental and blames me for everything. He left me with my parents and we got divorced.”
Blaming caregivers for remained unmarried and broken marriages
PMI blamed their parents for remained unmarried and broken marriages. Not finding the right partner to get married, not making negotiations with spouse, negative expressed emotions in the presence of spouse and their family members, forced medication, frequent hospital visits even though they were maintaining well, and not allowed to attend the work were the common reasons to blame family members such as parents, spouse, and brothers.
“I am not getting any support from my family. I am separated from my wife just because of my parents.”
“My parents are the one who made me to suffer with this condition.” They are not searching partner for me, but they will take me every time to hospital for follow up without my concern.”
Caregivers' difficulties to arrange the marriage proposal and strengthen the marital relationships
Psychiatric symptoms leading to behavioral problems of PMI had significant negative impact on caregivers. Caregivers had lost social support from close family members, relatives, and friends in the community. They also experienced stigma by close family members. In spite of these problems, caregivers had made multiple attempts to arrange marriage proposal for their son or daughter. In addition, they made attempts to resolve marital disputes, but there was noncooperation from their sons or daughters-in-law, daughters or sons-in-law, family members, relatives, and friends; thus, marital disputes continued to be unresolved. The lack of social support became a major challenge to find the bride or bridegroom for their son or daughter. On the other hand, the ongoing unresolved marital disputes created burnout, fear, and burden in caregivers; as a result, caregivers withdrew from social participation.
“I tried searching pair for my daughter but when I told them about her condition, they asked me why she needs a marriage?”
“Because of my son's behavior in the village, I failed in arranging my son's marriage.”
Caregivers' apprehensions about future marital life of their loved ones
Another theme that emerged out was caregivers' worry about future marital life of their loved ones. The caregivers had expressed concerns about the future life of their loved ones, especially on marriage life, in terms of who will marry? How do they lead a happy marital life? Who will provide job and supervise medication? How do they face social stigma in the absence of caregivers? In addition, the question of “what after me” was raised more often. [Table 3] explains the summary of qualitative findings.
“I am worried about my son's marriage. Currently I stopped searching proposals for him because he is currently symptomatic and who will marry him right now?
“In our culture, we all believe that marriage is an important element. If my son gets married with a girl who can understand him and take care of him, its fine. If not, I don't know; what is going to happen to his marital life?
| Discussion|| |
Very limited studies have explored the subjective perceptions about marriage among PMI and their caregivers. Therefore, the current study objective was to understand the perceptions about marriage among PMI and their caregivers. In case of PMI, getting married and staying with the spouse and in case of their caregivers, arranging marriage for their son or daughter and resolving marital disputes were the major concerns.
The results showed that PMI were unhappy regarding their own marital status and marital life. Frequent rejection of marriage proposals, remained unmarried for long years, anger between couple, unresolved marital disputes, separation from spouse, failure of caregivers to find the right partner, poor negation skills among caregivers to settle marital disputes, negative expressed emotions, forced medication or follow-up visits, and unemployment were reasons for unhappy for martial life as well as blaming the caregivers. This finding is similar to previous studies which show that failure to establish and sustain a committed intimate relationship in young adulthood have serious negative implications on well-being. Cultural influences such as stigma and discrimination are barriers for help seeking, looking for a close relationship, and applying for work.,,, Studies also depict that spouses with problematic relationships have higher mental health problems. Marital discord, separation, and divorce rates are on the higher side among PMI. Stigma experienced and perceived among family of origin are other mediating factors in this issue. Other stressors are also found to be responsible such as exacerbations, relapse, uncertainty being fixed up, dowry-related issues, moving to a new home, expressed emotions, poor drug adherence, stress of first sexual experience, pregnancy, and child birth.
Caregiving is left to family members in nearly 50% in Western countries and 98% in India. The family members are parents, spouse, sisters, brothers, etc. Psychiatric symptoms leading to behavioral problems had a significant negative impact not only on PMI but also on caregivers. The current results revealed that caregivers perceived increased frequency of failure of marriage proposals and unresolved and ongoing marital disputes of their son or daughter. For this, caregivers attributed that symptomatic behavior, noncooperation from son or daughter-in-law, and lack of social support from relatives led to their son or daughter being unmarried and unresolved martial disputes in the family, whereas symptomatic behavior was denied by PMI as a reason. Caregivers also accepted that anger outburst and own mental burnout toward their son or daughter might have contributed to the symptomatic behavior, but they were not sure. These issues became a major barrier and failure of caregivers' efforts toward marriage, which in turn affected caregivers' mental health. The study findings are similar to those of previous studies which reported that strained parenthood and supportive spousal relationships are associated with mental health problems of families, and caregivers often experience loneliness.,, Discrimination, reduced socialization, psychiatric and physical morbidity, stigma, loss of work, financial stresses, and lessor time for leisure activities had increased the risk for caregivers. In addition, caregivers had more apprehensions regarding future life of their loved ones, especially marital life, in terms of when will they get married? How do they lead happy marital life in the absence of caregivers? More often, what after me was the question raised from caregivers' perspective. One of the caregivers reported that “I don't know what is going to happen to his marital life after me?” This is one of the potential areas where further research is suggested.
Limitations of the study
The study results were cautioned to apply to other settings. The perceptions, feelings, and experiences were captured as the part of day-to-day clinical practice. The sample size was small. Data were not audio recorded. Psychosocial interventions such as early information about mental illness before marriage, premarital counseling, psychoeducation about mental illness, supportive therapy, referrals to family therapy, and free legal aid clinics were provided for needy people, but outcome was not measured.
Findings of this qualitative inquiry emphasize the need to explore the expectations from marriage and preparedness for marriage among PMI using structured questionnaires on large sample size including people from different cultural backgrounds. Most families hesitate to disclose the current mental status of their loved ones to prospective partner; hence, studies are required to curb these challenges and dilemmas. Further experimental studies can examine the effectiveness of premarital training program for both index individuals and significant members of family of origin. Similarly, quantitative studies may be conducted to understand the predictors of successful marital life among the same population. The study results would help supervisors of mental health care to sensitize the trainees to look into this issue seriously, which, in turn, would prevent the possible distress associated with marriage among this special population.
| Conclusion|| |
The study observed that PMI were unhappy with their own marital status and blamed caregivers/parents for their situation. Caregivers had faced difficulties in terms of behavioral problems of son or daughter, social stigma, noncooperation from in-laws, and lack of social support to ensure better marital life. Creating awareness, eradicating stigma associated with mental illness, rendering psychosocial interventions to strengthen self-efficacy, resolving the marital disputes of PMI, and ensuring better mental health for caregivers are useful measures in the clinic as well as in the community. Therefore, health-care professionals who work closely with patients and caregivers need to take a lead role to protect the right to marriage, resolve marital disputes, and enhance the psychosocial well-being in the family.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3]