|Year : 2022 | Volume
| Issue : 2 | Page : 51-56
Stress and burden among caregivers of persons with bipolar affective disorder during the COVID-19 pandemic in India
PD Sandya1, Kannappa V Shetty2, Jithin Jaise3, Sanjeev Kumar Manikappa4, Nagesh Brahmavar Pai5
1 Department of Psychiatry, St. John's Research Institute, Bengaluru, Karnataka, India
2 School of Social Work, Indira Gandhi National Open University, New Delhi, India
3 Department of PSW, DIMHANS, Dharwad, Karnataka, India
4 Centre for PSS in Disaster and Management, NIMHANS, Bengaluru, Karnataka, India
5 Department of Psychiatry, University of Wollongong, Wollongong, Australia
|Date of Submission||02-Dec-2021|
|Date of Decision||15-Mar-2022|
|Date of Acceptance||23-Mar-2022|
|Date of Web Publication||23-May-2022|
Kannappa V Shetty
School of Social Work, Indira Gandhi National Open University, New Delhi - 110 068
Source of Support: None, Conflict of Interest: None
Introduction: Bipolar affective disorder (BPAD) is a severe mental illness causing significant problems in the lives of individuals with the disorder and those who care for them as well are. Most of the time people with mental illness are taken care of by mental health professionals, while little priority is given to their caregivers. There are numerous studies in India attempting to understand the impact of illness on caregivers and the problems faced by the caregivers of persons with BPAD. Methods: The study aimed to assess the family caregivers' stress and burden among caregivers of persons with BPAD at a tertiary care center in Dharwad, India. Descriptive research design and simple random sampling was used for recruiting 50 samples. Apart from sociodemographic schedule, burden assessment scale and perceived stress scale (PSS) were used for data collection. Results: The mean age of caregivers was 44.76 years. The average duration of illness of the patients was 9.80 years and their mean annual income was 35,500 rupees reported in the study. The mean score of impact of wellbeing subscale was higher (11.34) when compared with other sub scales of the burden assessment scale, and the overall score of burden assessment scale (31.82) indicated high levels of burden. PSS mean was 21.44, indicating high stress levels. Conclusion: The study concludes that burden and perceived stress were elevated among the caregivers of people with BPAD during the COVID-19 pandemic.
Keywords: Bipolar affective disorder, burden, caregiver, COVID-19 pandemic, psychosocial issues, stress
|How to cite this article:|
Sandya P D, Shetty KV, Jaise J, Manikappa SK, Pai NB. Stress and burden among caregivers of persons with bipolar affective disorder during the COVID-19 pandemic in India. Asian J Soc Health Behav 2022;5:51-6
|How to cite this URL:|
Sandya P D, Shetty KV, Jaise J, Manikappa SK, Pai NB. Stress and burden among caregivers of persons with bipolar affective disorder during the COVID-19 pandemic in India. Asian J Soc Health Behav [serial online] 2022 [cited 2022 Jun 30];5:51-6. Available from: http://www.healthandbehavior.com/text.asp?2022/5/2/51/345793
| Introduction|| |
Bipolar affective disorder (BPAD) is one of the most common psychiatric disorders with a lifetime prevalence of about three percent in the general population and is the sixth leading cause of disability worldwide., It is characterized by unusual shifts in mood, energy, activity levels, concentration, and difficulty in carrying out daily tasks. The changes in mood range from extremely “up,” elated or irritable behaviors (known as manic episodes) to extremely “down,” sad or hopeless behaviors (known as depressive episodes).,
The caregivers of BPAD perform a variety of roles in providing care to a person suffering from mental illness including providing day-to-day care, supervising medications, transporting the patient to the hospital, and looking after their financial needs. The family caregiver must also deal with the patient's behavioral issues. As a result, the family caregiver faces significant stress and burden and requires assistance in coping with these issues., Caregiver burden may make the caregivers have the feeling of affiliate stigma as well. The caregivers of BPAD are at a higher risk of developing psychological issues and stress disorders. According to studies, severe mental illness is frequently connected with significant pressures on family members of the person with mental illness, particularly those who provide care.,
COVID-19 is one of the most devastating pandemics the world has faced in the recent years, and it has created further issues for vulnerable populations, such as those with mental illness like BPAD. Because of the pandemic, regional, state, and national-international borders have been shut down, economies crashed, and billions of people have been quarantined or isolated in their own homes or quarantine centers. The lockdown, quarantine, and social distancing helped reduce the spreading of COVID-19, but it has had serious impacts on society, relationships, and interactions. It has affected the individual's interpersonal relationships.,, COVID-19 has resulted in health-care systems around the world shifting their focus from diagnosis and treatment of other diseases to COVID-19, and access to health-care systems has decreased because of lockdown and self-isolation. Difficulties accessing health care leads to relapse in many patients. Further, as both patients and heath-care providers are at risk of getting COVID-19, many patients have avoided accessing care, which in turn leads to relapse. Mood swings can occur due to relapse and individuals can develop suicidal thoughts and feelings. This can increase the burden and stress for caregivers. During the first few months of the COVID-19 pandemic, caregivers, particularly long-term caregivers, had a higher likelihood of various physical and mental health difficulties than noncaregivers.
The pandemic has instigated innumerable challenges to the families and caregivers of people with BPAD. The caregivers of individuals with BPAD require support in the context of the pandemic to avoid anxiety leading to stress, burden, and mental health conditions. They frequently have their own COVID-19 contamination risk, as well as increased concerns about self-care and health, which can lead to stress when making judgments about the care recipients' requirements.
The COVID-19 pandemic has posed a lot of serious new challenges and issues for everyone across the globe. In particular, vulnerable groups such as persons with mental illness and their families have been finding it very difficult to cope with the new stressful situations caused by the pandemic in addition to the preexisting social stigma, burden, disability, unemployment, and poor social support. The current study's main objective was to find out how and to what extent the caregivers of persons with BPAD are further burdened and stressed because of the prevailing conditions and new norms caused by the pandemic.
The findings of the study would help mental health professionals come out with new intervention strategies to empower the caregivers of persons with mental illness for managing burden and stress more effectively. Furthermore, the study would give insights into the importance of including persons with mental illness and their families in disaster rick reduction and preparedness programmers. The study aimed to assess the family caregivers' stress and burden among caregivers of persons with BPAD at a tertiary care center in Dharwad, India.
| Methods|| |
The study followed a cross-sectional design with simple random sampling technique.
Setting of the study
The study was conducted at the outpatient department of Dharwad Institute of Mental Health and Neurosciences (DIMHANS), Karnataka. It is a 212-bed state government run tertiary care hospital located in North Karnataka of Southern India. The institute caters to needs of nearly 400–450 patients per day who visit from different parts of Karnataka, Goa, Andhra Pradesh, and Maharashtra states.
Sample size estimation
The number of mentally ill patients and their caregivers attending the outpatient department (OPD) and inpatient department (IPD) have reduced drastically during lockdown. Even most of the patients with BPAD attending outpatient treatment were emergency clients. Hence, the sample size was calculated based on the previous studies conducted during the COVID-19 period in the field of psychiatry,,,, in which the sample size ranges from nine patients diagnosed with BPAD to 36 patients. Therefore, we have recruited 50 caregivers of patients with BPAD for the study.
For the present study, the investigator used simple random sample selection procedure and the study was conducted at the outpatient and IPD of DIMHANS. In the outpatient department, daily about 2–3 samples were selected randomly using random table numbers. The data were collected from January 01 2021 to April 30, 2021.
Primary caregivers who were living with the patient for at least a year before the data collection period, caregivers who were about 18 years providing care for their patient, patients who were on medication and regular follow-up with the outpatient department for at least past 1 year, caregivers who could speak English and/or Kannada, and the caregiver who did not have any medical or psychiatric issues were included for the study. The caregivers of persons with other mental disorders were excluded from the study.
Sociodemographic data sheet
Sociodemographic data sheet developed by the researcher consists of demographic variables, clinical variables, and social support variables.
Burden assessment scale
The tool was developed by Indian Mental Health Experts including Sell, Thara, Padmavati, and Kumar in 1998. The scale has proved to have good validity and reliability in Indian society. The scale consists of 20 items. Each item is rated on a 3-point scale and assesses the burden of caregivers with a scoring scheme of 1 for “not at all “2 for “some extent” and 3 “for very much.” The questions of the scale are characterized under five factors, such as impact of wellbeing, marital relationships, appreciation for caring, impact on relationships with others, and perceived severity of disease. Thus, the maximum score in each area of burden is 12, with higher scores indicating high degree of burden.
Perceived stress scale
The revised version of perceived stress scale (PSS) was developed by Cohen, Kamarck, and Mermelstein in 1994. It has become one of the most widely used scales to measure levels of stress. This scale consists of 10 items and 4-point scale (never, almost never, sometimes, fairly often, and very often); 0 = never, 1 = almost never 2, = sometimes, 3 = fairly often, and 4 = very often. PSS scores are obtained by reversing responses (e.g., 0 = 4, 1 = 3, 2 = 2, 3 = 1 and 4 = 0) to the four positively stated items (items 4, 5, 7, and 8) and then summing across all scale items. The higher the score, the more perceived stress. Internal consistency for this scale was high and alpha ranged from 0.829 to 0.903. The PSS has been widely used in Indian context., The internal consistency of PSS (English) and PSS Indian languages was measured by Cronbach's alpha coefficient (0.80) and found to be satisfactory.
Ethical approval for this research was obtained from the Institutional Ethical Review Board of DIMHANS, Dharwad, Karnataka (No-DIMHANS/I.E.R.B/8/2019–20). Prior to data collection, patients and caregivers were given information about the nature of the study. The data collected were reported in general terms and do not involve any identifying data. All the data were kept confidential and securely held for required time period. The data were entered into a computerized database and identity of the participants was protected by the use of a code. Written informed consent was obtained from those participants who were willing to participate in the study.
The data were computed in excel and exported to (IBM Statistical Package for the Social Sciences (Version 20), IBM United Kingdom Limited, Surrey, UK). Frequency and central tendencies like mean, median, and standard deviation were performed. Other tests like Chi-square and Pearson's correlation were applied.
| Results|| |
[Table 1] reveals the description of demographic variables of people with BPAD. The [Table 1] shows that majority of the participants were female (54%). Sixty-two percent of them are married; the majority (68%) did not have formal education and 34% of the population depended on manual work for an income. The majority of the population (90%) resided in rural area. Seventy-six percent of the people belonged to a nuclear family and the majority (84%) reported medication adherence issues.
[Table 2] explains the demographic variables of caregivers of people with BPAD. The [Table 2] shows that the majority of caregivers were female (54%). Seventy-six percent did not have formal education. Sixty-two percent of them depended on manual work. The majority were married (94%) and the majority of the families did not have any history of mental illness (74%).
|Table 2: Sociodemographic variables of care givers and history of mental illness in family|
Click here to view
[Table 3] depicts continuous sociodemographic variables of patient and caregivers. The mean age of patients was 36.48 years, average annual income of the patients is 19,200₹, average duration of illness of the patients is 9.80 years, average number of relapses in the patients is 5, and the average number of hospitalizations is 5. The mean age of care givers is 44. 76 years and their mean annual income is 35,500₹ reported in the study.
|Table 3: Mean scores on age of the patient, income, duration of illness, number of relapses, number of hospitalization and caregivers age and income|
Click here to view
[Table 4] depicts the mean scores of burden assessment scale (BAS) and PSS among caregivers of people with BPAD. The mean score on the impact of wellbeing subscale is 11.34, the impact on marital relationship subscale is 8.35, the appreciation for caring subscale is 5.12, the impact of relationships with others subscale is 5.40, and the perceived severity of disease subscale is 7.12. The total mean score of BAS is 31.82. The study reveals that the mean score of impact of wellbeing subscale is (11.34) higher compared with other subscales of the BAS and the overall score shows high burden among the caregivers of people with BPAD.
|Table 4: Mean score on Burden Assessment Scale and Perceived Stress Scale|
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The PSS mean score is 21.44 and as per the scoring details of scale, the above-mentioned score (21.44) is considered as moderate stress. Therefore, the study revealed that perceived stress is more among the caregivers of people with BPAD.
| Discussion|| |
The total mean score of the BAS is 31.82. and it shows high burden among caregivers of people with bipolar affective disorder.
Similar results have been found in other research studies conducted in India and Western countries. A cross-sectional study was conducted by Walke et al. in the Udupi taluk of Karnataka with 320 caregivers of BPAD to assess the burden of caregivers and found that the highest amount of burden was seen in the areas of physical and mental health, spouse related, and in areas of external support. Another study by Khanna, et al. in Assam in 2017, conducted to assess the burden and coping strategies among caregivers of patients with BPAD, found that those with higher levels of burden used coping strategies like negative coping, external attribution, and avoidance significantly more than those with lower levels of burden. A study by Gania et al., assessing the impact of illness, beliefs on the burden reported by family caregivers of people with bipolar illness and found that at baseline, 93% of caregivers reported moderate to severe distress in at least one burden domain.
The caregiver's burden was elevated during the COVID-19 pandemic as this study was conducted during COVID-19 pandemic that has created various psychosocial issues in society as well as among the families of people with mental illness including BPAD. There is a lot of literature showing that vulnerable groups such as children, persons with disability, women, elderly, and persons with mental illness are more vulnerable to various psychosocial problems during any disasters like the COVID-19 pandemic.,,, This indicates that persons with mental illness and their caregivers experience greater burden and stress during such emergencies in addition to the existing issues and challenges pertaining to the mental illness itself. During the pandemic, the government has imposed social restrictions including lockdown, where the caregivers of people with BPAD had to struggle to get treatment at times, as there were no transportation facilities. Financial deprivation was another issue that resulted in problems with access to medication and stigma related to COVID-19 also played a major role for not attending hospital follow-ups. Many studies conducted in India and western countries on BPAD during COVID-19 pandemic show that the majority of the caregivers of people with BPAD had high burden pertaining to caregiving.,,,
The mean score of PSS was 21.44, which is higher than the cutoff score. Hence, the study revealed that perceived stress is more among the caregivers of people with BPAD. In contrast, there was difference from results of studies conducted before COVID-19 pandemic. One such study by Abishek Kumar found that mean score of PSS was 20.20 among the caregivers of BPAD. Another study by Sapharina and Neelakshi used PSS scale to measure the stress among the families of severe mental disorder found moderate caregivers stress. However, the present results have been corroborated with other studies conducted on perceived stress among caregivers of people with BPAD in India and Western countries as well.,,, A study by Chen et al. explained that caregivers who face more stress are not able meet their own needs both emotional and financial, are more likely to be criticized or blamed by the family, and have marital issues and health issues. Another study by Drisya et al. in outpatient clinics of the district mental health program aimed to assess the marital stress among partners of individual with BPAD reported that considerable proportion of BPAD patients' spouses experience marital distress in critical aspects of their lives, with the potential for long-term effects.
The current study findings are also consistent with following similar studies conducted during the COVID-19 pandemic on BPAD and other mental disorders. The global pandemic has instigated various innumerable challenges to the families and caregivers of people with severe mental disorders and they are at a higher risk of developing psychological comorbidity and stress disorders. Most of the caregivers in the current study live with families comprising elderly parents, persons with multiple disabilities who have preexisting physical or mental illness in remote rural areas of North Karnataka region. The patients diagnosed with BPAD and other severe mental disorders are at a substantial risk of having trouble while performing crucial hygiene measures and are deprived of accessing health care services including drug adherence and regular follow-ups with mental health professionals. Hence, these care givers are prone to develop more stress while caring for their patients with BPAD.
Many sociodemographic factors including care givers' age, gender, income, occupation, education, family history of mental illness, and family support are interlinked with stress and burden among the caregivers of people with BPAD.
It should be noted that the current study contained a few limitations which should be taken into account while interpreting the findings. The sample size was small, thereby limiting the generalizability of the findings to population and the study is limited to patients who are admitted and taking treatment in follow-up basis during the study period at DIMHANS, Dharwad.
| Conclusion|| |
This study indicates that there is significant burden and stress among caregivers of people with BPAD and it has led to various psychosocial issues and relapse in the patients. Thus, appropriate psychosocial interventions including coping skills, problem solving techniques, stress management, and community treatment that are context specific to COVID-19 should be developed and delivered to caregivers and individuals with BPAD.
The authors are grateful to all the BPAD patients and their family and the current research has not received specific financial grant from any funding agency in the public/private sector.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Herrman H, Saxena S, Moodie R. Promoting Mental Health: Concepts, Emerging Evidence, Practice: A Report of the World Health Organization, Department of Mental Health and Substance Abuse in collaboration with the Victorian Health Promotion Foundation and the University of Melbourne. World Health Organization; 2005.
Schmitt A, Malchow B, Hasan A, Falkai P. The impact of environmental factors in severe psychiatric disorders. Front Neurosci 2014;8:19.
Sadock BJ, Sadock VA. Kaplan & Sadock's Comprehensive Textbook of Psychiatry. Vol. 1-2. New York: Lippincott Williams & Wilkins Publishers; 2000.
Ahuja N, Vyas J. Psychiatric Emergencies. In: Textbook of Postgraduate Psychiatry. New Delhi: Jaypee the Health Sciences Publisher; 2008. p. 2.
Chakrabarti S, Gill S. Coping and its correlates among caregivers of patients with bipolar disorder: A preliminary study. Bipolar Disord 2002;4:50-60.
Grover S, Chakrabarti S, Ghormode D, Dutt A. A comparative study of caregivers' perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia. Nord J Psychiatry 2015;69:629-36.
Chang CC, Yen CF, Jang FL, Su JA, Lin CY. Comparing affiliate stigma between family caregivers of people with different severe mental illness in Taiwan. J Nerv Ment Dis 2017;205:542-9.
Chadda RK. Caring for the family caregivers of persons with mental illness. Indian J Psychiatry 2014;56:221-7.
] [Full text]
Eckardt JP. Caregivers of people with severe mental illness in the COVID-19 pandemic. Lancet Psychiatry 2020;7:e53.
Ogilvie AD, Morant N, Goodwin GM. The burden on informal caregivers of people with bipolar disorder. Bipolar Disord 2005;7 Suppl 1:25-32.
Kelleher E, Geary E, Tawfik M, Ní Mhuircheartaigh E, Gavin B, Wall M, et al.
Consultant psychiatrists's experience of the impact of the COVID19 pandemic on mental health services in Ireland. Irish J Psychol Med 2021:1-28. Published online 2021 Apr 29.
Shetty KV, Sonkar S, Mahadevaiah M. Technology-based psychosocial management for psychological distress due to stigma associated with COVID-19: A case study from North Karnataka. J Ment Health Hum Behav 2021;26:36.
Armbruster S, Klotzbücher V. Lost in lockdown? COVID-19, social distancing, and mental health in Germany. Diskussionsbeiträge 2020.
Carvalho Aguiar Melo M, de Sousa Soares D. Impact of social distancing on mental health during the COVID-19 pandemic: An urgent discussion. Int J Soc Psychiatry 2020;66:625-6.
Pal A, Saxena V, Avinash P. Stigma in bipolar affective disorder: A systematic quantitative literature review of indian studies. Indian J Psychol Med 2021;43:187-94.
Cohen SA, Kunicki ZJ, Drohan MM, Greaney ML. Exploring changes in caregiver burden and caregiving intensity due to COVID-19. Gerontol Geriatr Med 2021;7:1-9.
Majid GA, Kaur H, Suhaff AA, Grover S, Khan AW, Wani SM. Coping among caregivers of patients suffering from bipolar affective disorder. J Ment Health Hum Behav 2019;24:139.
Dang S, Penney LS, Trivedi R, Noel PH, Pugh MJ, Finley E, et al.
Caring for caregivers during COVID-19. J Am Geriatr Soc 2020;68:2197-201.
Bhuvaneswari R, Raj SN, Raj N, Vaiyapuri S, Muraleedharan KC. Impact of lockdown due to COVID-19 pandemic on psychiatric patients. Int J Community Med Public Health 2021;8:4378.
Kshirsagar MM, Dodamani AS, Dodamani GA, Khobragade VR, Deokar RN. Impact of COVID-19 on mental health: An overview. Rev Recent Clin Trials 2021;16:227-31.
McLoughlin J, O'Grady MM, Hallahan B. Impact of the COVID-19 pandemic on patients with pre-existing mood disorders. Ir J Psychol Med 2021:1-10. Online ahead of print.
Zahoor M, Rather YH, Roub F. Sociodemographic profile of patients visiting ketamine clinic during Covid times in Kashmir. JMS 2021;24:47-51.
Sell H, Thara R, Padmavati R, Kumar S. The Burden Assessment Schedule. New Delhi: WHO Regional Health Office for South East Asia; 1998.
Cohen S, Kamarck T, Mermelstein R. Perceived stress scale. Measuring stress: A guide for health and social scientists. 1994;10:1-2.
Muley PP, Muley PA, Meshram KA. Effect of COVID-19 lockdown on perceived stress scale in medical students. Indian J Forensic Med Toxicol 2020;14:6426-9.
Walvekar SS, Ambekar JG, Devaranavadagi BB. Study on serum cortisol and perceived stress scale in the police constables. J Clin Diagn Res 2015;9:C10-4.
Chakraborti A, Ray P, Sanyal D, Thakurta RG, Bhattacharayya AK, Mallick AK, et al.
Assessing perceived stress in medical personnel: In search of an appropriate scale for the bengali population. Indian J Psychol Med 2013;35:29-33.
] [Full text]
Walke SC, Chandrasekaran V, Mayya SS. Caregiver burden among caregivers of mentally ill individuals and their coping mechanisms. J Neurosci Rural Pract 2018;9:180-5.
] [Full text]
Khanna R, Gupta N, Shanker S. Course of bipolar disorder in eastern India. J Affect Disord 1992;24:35-41.
Diaz A, Baweja R, Bonatakis JK, Baweja R. Global health disparities in vulnerable populations of psychiatric patients during the COVID-19 pandemic. World J Psychiatry 2021;11:94-108.
de Miranda DM, da Silva Athanasio B, de Sena Oliveira AC, Simoes-e-Silva AC.
How is COVID-19 pandemic impacting mental health of children and adolescents? Int J Disaster Risk Reduct 2020;51:101845.
McKinney EL, McKinney V, Swartz L. Access to healthcare for people with disabilities in South Africa: Bad at any time, worse during COVID-19? S Afr Fam Pract (2004) 2021;63:e1-5.
Mathias K, Rawat M, Philip S, Grills N. “We've got through hard times before: Acute mental distress and coping among disadvantaged groups during COVID-19 lockdown in North India-a qualitative study”. Int J Equity Health 2020;19:224.
Taquet M, Luciano S, Geddes J, Harrison PJ. Bidirectional associations between COVID-19 and psychiatric disorder: Retrospective cohort studies of 62 354 COVID-19 cases in the USA. Lancet Psychiatry 2021;8:130-40.
Kumar A, Srivastava M, Ranjan LK. Perceived expressed emotion and stress among schizophrenia and BPAD patients with first and multiple hospitalizations. Indian J Posit Psychol 2021;12:122-5.
Sapharina GS, Neelakshi G. Relationship between perceived stress and coping among caregivers of patient with Schizophrenia. Indian J Public Health 2020;11:331.
Van der Walt IA. A Psychosocial Educational Programme for Caregivers of People Diagnosed with Bipolar Disorder. Pretoria: University of Pretoria; 2014.
Sajatovic M. Bipolar disorder: Disease burden. Am J Manag Care 2005;11:S80-4.
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 J Psychiatry 2014;4:1-12.
Perlick D, Clarkin JF, Sirey J, Raue P, Greenfield S, Struening E, et al.
Burden experienced by care-givers of persons with bipolar affective disorder. Br J Psychiatry 1999;175:56-62.
Chen R, Xi Y, Wang X, Li Y, He Y, Luo J. Perception of inpatients following remission of a manic episode in bipolar I disorder on a group-based Psychoeducation program: A qualitative study. BMC Psychiatry 2018;18:26.
Drisya P, Bindumol K, Saleem TK, Narayan D. Marital problems among partners of patients with bipolar affective disorder. Indian J Psychol Med 2019;41:448-54.
] [Full text]
Armitage R, Nellums LB. The COVID-19 response must be disability inclusive. Lancet Public Health 2020;5:e257.
[Table 1], [Table 2], [Table 3], [Table 4]