Resilience in family members of patients diagnosed with mental illness - An exploratory cross sectional study

 

Sreelatha P^1*, Sumana G²

 

 

Abstract               Background: There is extensive research on the burden of families in which a member has been diagnosed with a severe mental disorder. Much is required to be done to identify families resilient in the face of the burden of caring for a mentally ill member. Aims: To examine resilience in family members who are living with and caring for a mentally ill family member. Materials and Methods: A sample of 74 family members of patients with a mental disorder was selected by purposive sampling. Participants were interviewed using the socio demographic data Performa, semi structured questionnaire and Connor-Davidson Resilience Scale. Results: Majority of the family members had low resilience which is about 70.27%. Resilience is found to have no significant correlation with the socio demographic variables of age, gender, marital status and occupation. However low socioeconomic status and education was found to be significantly associated with low resilience. Conclusion: Dealing with a mentally ill family member has a negative impact on the family. These findings can help mental health professionals in fostering support groups to enhance resilience and well being of families living with a member with mental disorder.

Key Words: Family, resilience, burden, mental illness.

 

 

 

INTRODUCTION

Resilience can be conceptualized as the achievement of positive adaptation despite major assaults on the developmental process such as exposure to significant threat, severe adversity, or trauma.¹There is no single consensus on the definition of resilience though many researchers agree on the basic idea of “bouncing back phenomenon” resulting in positive outcomes in the face of hardships faced by the individual.²The concept of resilience gained acceptance in researchers who examined the family stress and coping, which initiated a new trend that processed resilience as a family-level construct.³ Family resilience strives to make families cope more efficiently and emerge from any crisis, whether from within or from outside the family. Family resilience strengthens the family as a functional unit and enables the family members to consider family as a potential resource of resilience.⁴ Previous family studies focused on what families did wrong –family dysfunction, deficits and pathology. Recent research has shifted its attention to what the family does right that is healthy family functioning.⁵ Mental illness have a devastating impact both on the patient and the family.⁶Family members who take care of the mentally ill face immense difficulties as it drains their energy and also is time and cost consuming with consequent burden on caregivers.⁷It also leads to impairment in quality of life and inhibitions in usual social involvement.⁸ As the member affected with mental illness is observed to be frequently living at home with family members rather than in institutions, it is a significant source of family stress. Families typically face a diverse range of problems on a daily basis, with a family member with a severe mental illness living with the family leads to additional and significant impact on the entire family system.⁹ Family caregivers of persons with mentally illness are frequently faced with the stigma associated with mental illness, which leads to social isolation of families, financial difficulties, occupational restrictions, frustration, anxiety, low self esteem, helplessness, reduction in leisure activities, discrimination and apprehensions about the future.^10,11,12 Resilience in the context of family depicts members overcoming the odds of not only surviving the day-to-day burden of caring for a family member who is mentally ill, but to thrive, that is, to grow into a stronger, more flexible and healthier person.¹³Few studies have focused to study resilience in family members with severe mental illness.^14,15 In a study done in family caregivers of people with mental disorders 51% showed high resilience.¹⁵ In a study conducted in a community health set up in south India high resilience was seen in 35% of family members.¹⁶ Researchers observed that acceptance, hardiness, hope, mastery, self-efficacy, sense of coherence, resourcefulness, communication, social support, intra familial emotional and practical support, family time spent together, religion and spirituality, optimism and perseverance as the possible indicators of resilience in family members.^17,18,19 In this context the present study aims to assess resilience in family members living with and caring for patients with a mental illness.

MATERIALS AND METHODS

This is a cross sectional explorative study conducted in a teaching hospital of rural setup in South India using purposive sampling. Sample consisted of family members of patients with ICD-10 established psychiatric diagnosis with illness duration of more than 2 years. The sample was taken from the inpatient and outpatient services of the hospital. Participating family members should meet the following inclusion criteria: who have given a written informed consent, age above 18years of age, staying with the patient. Family members with prior history of psychiatric diagnosis and neurological and cognitive impairment were excluded. Family members were approached during their visits to the hospital accompanying the patient, in case of patients consulting on their own, family members were contacted through telephone and were explained the purpose of the study. Those family members who consented to participate in the study were given a prior appointment to administer the questionnaire. The questionnaire consists of socio demographic details of family member and patient, perception and experiences of the family member in dealing with the mental illness of the patient and the resilience questionnaire. For the purpose of the current study 98 family members were identified of which 12 respondents were excluded based on the exclusion criteria. Of the remaining 86 family members, 74 respondents consented to participate in the study.

Tools of assessment include

1. The Connor-Davidson Resilience scale (CD-RISC): comprises of 25 items, each rated on a 5-point scale (0–4). The CD-RISC is a self-report scale, developed by Kathryn Connor and Jonathan Davidson, designed to measure an individual’s resilience that would enable successful adaptation in the face of adversity. The CD-RISC has been tested in the general population, as well as in clinical samples, and demonstrates sound psychometric properties, with good internal consistency, construct validity and test–retest reliability. Respondents rate items on a scale from 0 (‘‘not true at all’’) to 4 (‘‘true nearly all the time’’). Range is 0-100 and higher scores indicate high resilience. For the purpose of the current study resilience scores were further classified as low and high resilience based on cutoff median score of 75.4 according to a study done by Solano et al in family member normative controls of subjects with chronic pain.²⁰
2. Socio demographic data of family members and patient
3. Semi-structured questionnaire regarding the perception of family members of the mental illness of the patient, experiences of living with patient with mental illness and methods used by family members in dealing with the patient’s mental illness.

 

RESULTS

The age of the family members ranged from 20 to 68yrs with mean age of 44.79. Male family members was higher constituting of 59.46% (n= 44). Majority of family members of patients with mental illness were married (81%), 64.9% were employed, 48.7% were primary school educated, 60.8% belonged to the nuclear family and 50% belonged to low economic status. The age of the patients ranged from 18 to 72 with mean age of 40.34. In the patients with mental illness 56.8% were females, 51.4% married, 59.5% primary school educated. Majority of the family members in the study were spouses (39.2%) of the patient. Maximum of patients in the present study had duration of illness of 6-10 yrs and duration of treatment of 6-10 yrs. Patients who had 3-6 relapses at the time of the current study was 43.2% and 66.2% of patients were symptomatic. Psychiatric diagnosis in patients includes schizophrenia (32.4%), depressive disorders (21.6%) followed by alcohol dependence (13.5%) and anxiety disorders (13.5%). Resilience in family members was measured by CD-RISC. The sample was divided into low resilience and high resilience based on a cut off score used in previous study.²⁰ In the current sample of family members 70.27% had low resilience and 29.73% high resilience. Distribution of socio demographic profile according to the resilience groups is given in table: 1. Resilience is found to have no significant correlation with the socio demographic variables of age, gender, marital status, occupation and type of family. Statistically significant correlation was found between low resilience and low socio economic status (p value< 0.01). Similarly correlation between low resilience and low educational levels was statistically significant (p value<0.02). The experiences of the family members of patients with mental illness was predominantly negative with 18.9% reporting of feeling embarrassed and stigmatized closely followed by 17.6% reporting lack of peace. However 10.8% of family members had positive experiences like supportive friends and family. The low resilient family members had an excess of negative experiences like feeling embarrassed, lack of peace and feeling stigmatized as shown in table 2. Considering the various methods used by family members to deal with mental illness 41.8% spend time with friends and communicated with other family members. Whereas17.6% used avoidance to deal with patient with mental illness. Other methods employed are crying and consuming alcohol. Methods like involving in spiritual activities like prayer, watching TV and indulging in work comprised of 20.6%. Low resilient family members tend to employ avoidance more often to deal with mentally ill family member. Perception of mental illness in the family members with low resilience group was that of blaming the patient and blaming circumstances whereas majority of high resilient group acknowledged the psychological cause of mental illness.

Table 1: Socio-Demographic Profile and resilience of Family members

Table 2: Experiences and resilience of family members of individuals with mental illness

DISCUSSION

The present study set to assess resilience in family members of individuals with mental disorders. Using CD-RISC scale for measuring resilience high resilience was found in 22 out of 74 family members (29.73%). In another study on resilience in family caregivers of people with mental disorders using the same CD-RISC scale high resilience was reported as 51%.¹⁵While a study done in south India in a community sample of family caregivers of patients with mental illness using another measure for resilience (Family Resilience Assessment Scale) high resilience was observed in 35% of respondents.¹⁶The discrepancies in resilience scores could be partly explained by the different assessment tools used to measure resilience. Also majority of patients being symptomatic at the time of collection of data can explain the low resilience scores in the sample. In a study done by Enns et al used standardized measures to assess those factors which are thought to promote resilience. This study concluded that the family members experienced satisfaction and competence which are considered to be indicators of resilience irrespective of the burden experienced with the care of another member of family with mental illness.²¹Marsh et al depended on responses to open-ended questions designed to measure resilience in family members. Family members were asked to identify strengths within themselves, their family, or their mentally ill family member who they believed were developed in relation to their family member’s mental illness. Personal resilience was reported most frequently (99%) followed by family resilience (88%) and resilience in the mentally ill family member (76%).²² In a more recent study by Herbert et al with CD-RISC found that 24% of the offspring of parents with schizophrenia showed high resilience, 60% were in the middle range and 15% were low in resilience. They also observed that middle and high resilient offspring also reported more supportive relationships with other family members. Social support was the most frequently reported aspect that helped them to cope with difficulties.²³ A study was conducted to find out resilience amongst caregivers of individuals diagnosed with schizophrenia and bipolar disorder. The findings showed resilience to be same in both the groups of caregivers, i.e., there was no significant difference between resilience in caregivers of schizophrenic patients and bipolar disorder patients.²⁴ In a study exploring the effects of risk and protective factors on resilience in 60 women family members of adults with serious mental illness concluded that the consequences of the risk factors constituting caregiver burden (strain, stigma, client dependence and family disruption) on women's resilience were mediated by positive cognitions, which served as protective factors.²⁵ In the current study low socioeconomic status and low education levels had a significant relationship with low resilience levels in the participants. This is in unison with other studies that showed a positive relationship between high socioeconomic status and high resilience.^26,27,28 This could be explained by nature of the severe mental illness being chronic drains the family members of the financial resources and thus contributing to stress and disharmony in the family.²⁹There was no significant association found between duration of treatment and psychiatric diagnosis in individual with mental illness and family resilience. This concord with another study where no relationship was found between the duration of treatment and factors of resilience.³⁰Marital status had no association with the resilience measures in the current study which reflects similar finding in a study by Greeff et al.³¹ Majority of the current sample (62.16%) belonged to the rural community. The unique life circumstances and ecologies of the rural community differ markedly from urban population. As majority of the current sample also resulted in demonstrating low resilience, it would be ideal to do future studies on exclusive rural sample so as to enhance a comprehensive understanding of resilience in this population.³² With regards to experiences of the family members in adapting to another member in the family with mental illness variations were observed in the high and low resilience groups. Feeling embarrassed, lack of peace and feeling stigmatized was reported frequently in the low resilient family members. Supportive family, relatives and friends helped the high resilient group in coping with difficulties. This observation syncs with previous studies in which support from family and community when present contributed significantly to family coherence considered to be a resilience factor.^{26, 27, 31} This emphasizes the cultural belief system in India where family members do not give up on their responsibilities in caring for an individual with mental illness despite the cost both economically and emotionally. In numerous studies prayer and spiritual support was consistently associated with high resilience. ^{33, 34,35}This is in contrast to the current study where the proportion of family members using prayer to deal with the mental illness is low (7 out of 74 participants).One possibility is that family members have other methods of dealing with mentally ill family member (as reported more of negative methods being employed) and consequently less requirement of the spiritual support. The low resilient family members in the present study portrayed a negative perception of the mental illness in the family member. Blaming the patient and circumstances tend to predominate. Though less number of family members observed to have high resilience (29.73%), majority of this group seems to understand that the mental illness is psychological. Some of the limitations of the study include a heterogeneous sample including the types of mental disorders, duration of treatment, duration of illness, number of relapses, type of relationship with patient. The sample size was small. Being cross sectional study, may have not done justice to determine resilience which is considered to be a dynamic process. Future research with longitudinal design is suggested. This study didn’t focus on the risk and protective factors of resilience in family which gives scope for research in this much needed area.

 

CONCLUSION

The current study bears significance as due to the deinstitutionalization much of the care giving of the individual with mental disorders lies on the family members especially in Indian scenario. Hence study on the resilience of the family members and an understanding into their experiences and difficulties has become the need of the hour. This insight is necessary in developing interventions in promoting resilience and lessening the burden associated with caring for the mentally ill. Since majority of the family members were observed to have low resilience with the associated negative experiences, perceptions and faulty methods of dealing with mental illness in the current study, it depicts families struggling with their efforts and trying to cope ineffectively with a mentally ill family member. Future studies should focus on use of a homogenized sample and comparison group with emphasis on specific mental disorders. This would bring about awakening in our knowledge of strengths and resilience unique to family members caring for individuals with mental illness.

 

REFERENCES

1. Cicchetti D, Resilience under conditions of extreme stress: a multilevel perspective. World Psychiatry 2010; 9:145-154.
2. Fraser MW, Richman JM, Galinsky M. Risk, protection, and resilience: Toward a conceptual framework for social work practice. Social Work 1999; 23:131-143.
3. Patterson J. Understanding Family Resilience. Journal of Clinical Psychology 2002; 58:233-246.
4. Walsh F. The Concept of Family Resilience: Crisis And Challenge. Fam Proc 1996; 35:261-281.
5. Werner EE. Risk, resilience, and recovery: Perspectives from the Kauai longitudinal study. Development and Psychopathology 1993; 5: 503-515.
6. Clarke.RE. Family costs associated with severe mental illness and substance use. Hospital and Community Psychiatry 1994; 45:808-813.
7. Mokgothu MC, Du Plessis E, Koen MP.The strengths of families in supporting mentally-ill family members’. Curationis 2015; 38: 1-8.
8. Pompili M, Harnic D, Gonda X, Forte A, Dominici G, Innamorati M et al.Impact of living with bipolar patients: Making sense of caregivers’ burden. World Journal of Psychiatry 2014; 4: 1–12.
9. Saunders JC. Families Living With Severe Mental Illness: A Literature Review. Issues In Mental Health Nursing 2003; 24:175–198.
10. Muhlbauer S. Experience of stigma by families with mentally ill members. Journal of the American Psychiatric Nurses Association 2002; 8:76–83.
11. Rose LE, Mallinson RK, Gerson LD. Mastery, burden, and areas of concern among family caregivers of mentally ill persons. Archives of Psychiatric Nursing 2006; 20: 41–51.
12. Tsang HW, Tam PK, Chan F, Cheung WM. Sources of burden on families of individuals with mental illness. International Journal of Rehabilitation Research 2003; 26:123–130.
13. Gillespie BM, Chaboyer W,Wallis M. Development of a theoretically derived model of resilience through concept analysis. Contemp Nurse 2007; 25:124–35.
14. Zauszniewski JA, Bekhet AK, Suresky MJ. Resilience in family members of persons with serious mental illness. Nurs Clin North Am 2010; 45(4):613–26.
15. Karimirad MR, Seyedfatemi N, Noghani F, Amini E, Kamali R. Resiliency family caregivers of people with mental disorders in Tehran. IJNR. 2018; 13:57-63
16. Faqurudheen H, Mathew S, Manoj Kumar T. Exploring family resilience in a community mental health setup in South India.Procedia Economics and Finance 2014; 18: 391 – 399.
17. Van Breda AD. Resilience theory: a literature review. Pretoria (South Africa): South African Military Health Service; 2001.
18. Greeff AP, Holtzkamp J. The prevalence of resilience in migrant families. Family and Community Health 2007; 30:189–200.
19. Greeff AP, Human B. Resilience in families in which a parent has died. The American Journal of Family Therapy 2004; 32:27–42.
20. Solano JP, Neto FL. Cross-cultural adaptation and validation of Brazilian Portuguese versions of the Dispositional Resilience Scale and Connor-Davidson Resilience Scale. Poster [PO-09] at WPA Meeting, Section on Epidemiology and Public Health, Sao Paulo. March 14-17, 2012.
21. Enns R, Reddon J, McDonald L. Indications of resilience among family members of people admitted to a psychiatric facility. Psychiatric Rehabilitation Journal 1999; 23: 127–133.
22. Marsh D, Lefley H, Evans-Rhodes D, Ansell V, Doerzbacher B, LaBarbera L, Paluzzi J. The family experience of mental illness: Evidence for resilience. Psychiatric Rehabilitation Journal 1996; 20: 3–12.
23. Herbert HS, Manjula M, Philip M. Growing up with a parent having schizophrenia: experiences and resilience in the offspring. Indian J Psychol Med 2013; 35:148–53.
24. Jain A, Singh DC. Resilience and quality of life in caregivers of schizophrenia and bipolar disorder patients. Global J Hum-Soc Science: Arts and Humanities – Psychology 2014; 14:1–5.
25. Zauszniewski JA, Bekhet AK, Suresky MJ. Effects on Resilience of Women Family Caregivers of Adults With Serious Mental Illness: The Role of Positive Cognitions. Archives of Psychiatric Nursing 2009; 23:412–422.
26. Rungreangkulkij S, Gilliss CL.Conceptual approaches to studying family caregiving for persons with severe mental illness. Journal of Family Nursing 2000;6: 341–367.
27. Solomon P, Draine J. Adaptive coping among family members of persons with serious mental illness. Psychiatric Services 1995; 46:1156–1160.
28. Greeff AP, Van der Walt KJ. Resilience in families with an autistic child. Education and Training in Autism and Developmental Disabilities 2010; 45: 347–355.
29. Bishop M, Greeff AP. Resilience in families in which a member has been diagnosed with schizophrenia. Journal of Psychiatric and Mental Health Nursing 2015; 22:463–471.
30. Lowyck B, De Hert E, Peeters E, Gilis P, Peuskens J. Belasting van gezinsleden van psychiatrische pati¨enten. Een literatuurstudie. [Burdening of family members of a psychiatric patient. A literature review] Tijdschrift voor Psychiatrie 2000; 42: 85–93.
31. Greeff AP, Vansteenwegen A, Ide M. Resiliency in Families with a Member with a Psychological Disorder. The American Journal of Family Therapy 2006; 34:285–300.
32. Hegney DG, Buikstra E, Baker P, Rogers-Clark C, Pearce S, Ross H et al. Individual resilience in rural people: a Queensland study, Australia Rural and Remote Health 2007;7: 1-12
33. Johnson ED. Differences among families coping with serious mental illness: a qualitative analysis. American Journal of Orthopsychiatry 2000; 70:126–134.
34. Marsh DT, Lefley HP. The family experience of mental illness: Evidence for resilience. Psychiatric Rehabilitation Journal 1996; 20: 3–12.
35. Greeff AP, Holtzkamp J. The prevalence of resilience in migrant families. Family and Community Health 2007; 30:189–200.