|SYMPOSIUM (THEME SECTION: CAREGIVING AND CAREGIVERS)
|Year : 2016 | Volume
| Issue : 1 | Page : 35-39
Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities
RC Jiloha, Prerna Kukreti
Department of Psychiatry and Rehabilitation Sciences, Hamdard Institute of Medical Sciences and Research, Jamia Hamdard, New Delhi, India
|Date of Web Publication||17-Feb-2016|
Prof. R C Jiloha
Department of Psychiatry and Rehabilitation Sciences, Hamdard Institute of Medical Sciences and Research, Jamia Hamdard, New Delhi - 110 062
Source of Support: None, Conflict of Interest: None
Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different in urban and rural settings along with different caregivers profile. This review will highlight these differences in light of their overall characteristics, and health seeking behavior. This further calls for empowering caregivers, understanding and exploring new dimensions of caregiving, and implementing holistic intervention for patients as well as caregiver's well-being.
Keywords: Caregiving, rural, urban
|How to cite this article:|
Jiloha R C, Kukreti P. Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities. Indian J Soc Psychiatry 2016;32:35-9
|How to cite this URL:|
Jiloha R C, Kukreti P. Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Aug 24];32:35-9. Available from: http://www.indjsp.org/text.asp?2016/32/1/35/176765
| Introduction|| |
In the bygone era, mentally ill were considered the undesirable members of the society, huge walls of mental hospitals were built more with the purpose of secluding them to protect society than for treatment. Then emerged the renaissance of right based movement and turn of the century witnessed the upsurge of community psychiatry across the globe. In the last decade, United Nations Convention on Rights of Persons with Disability momentum grew strong to raise a voice for equality, nondiscrimination, and right to live in the community. In addition with the simultaneous advent of effective treatment modalities, focus of care for persons with mental illness shifted from hospitals to community. However, the connecting bridge of professional community mental health care was missing. Thus, family members in the role of informal caregivers emerged as the fulcrum of care.
Indians share a collective value orientation and regard their caregiving as a reflection of the cultural ethos of interdependency and reciprocity. Thus, not just the dearth of beds in mental hospital or community care services but also strong family ties and innate felt responsibility for loved ones ingrained in the Indian culture made family members the crucial spokes wheel of therapeutic purpose.
India has a rich heritage of diversity in several dimensions which sometimes makes it important to understand different needs and problems of different groups for effective policy changes. Present article highlights the differences in magnitude of problem, challenges; health care beliefs, pathways to health care, caregiver burden, and sources available to deal with it for caregivers residing in rural and urban settings.
| Urban Rural Divide|| |
Demographic kaleidoscope and trend of mental illnesses
As per the 2011 census, India's population is 1210.2 million of which 68.84% resides in rural areas and 31.16% in urban areas.  As per the data from the World Health Organization (WHO), mental illnesses accounts for 20% of global burden of disease  and 86% of this is from low and middle income countries.  India being the second most populous country of the world, accounts for 17.5% of the world population;  hence, the numbers of persons with mental illness and their caregivers are also in huge numbers in India. National prevalence of mental disorder ranges from 9.5 to 370/1000 population. ,
National prevalence of mental disorders as per various meta-analysis is 58-73/1000 population. , Prevalence as per macroeconomic commissions report is 65/1000.  If we compare the statistics for differences in rural and urban morbidity, results are not consistent. A meta-analysis by Ganguli showed prevalence of mental illnesses in urban area to be 3.5% higher than rural population, 70.5/1000 rural population, and 73/1000 urban population;  however results are different for different disease category.  The study by the National Commission on Macroeconomics and Health showed that at least 6.5% of the Indian population has some form of serious mental disorders, with no discernible rural-urban differences. Difference for disease wise categories is more inconsistent. 
| Ethnography of the Community|| |
Most of the rural caregivers are either self-employed or unemployed, mostly working as farmers, artisans, landlords or laborers with strong social support but not much earning or resources to spend on health often worsened by on and off natural calamities. However, they have rich social support; scholars claim that social relationships may be stronger, more homogeneous, smaller, denser, and more personal for rural caregivers than urban.  Some literature also suggests that rural residents may experience higher level of mental well-being due to relatively higher social well-beingcompared to urban residents.  On the other hand, life of urban areas has its own set of boons and banes. On one extent are factors promoting mental health, greater freedom, and better opportunities for health, education and employment, lack of traditional barriers of caste, gender, etc. Other side of coin is challenge of staying in smaller houses, nuclear families, stresses of migration, time constrain, fast moving life, globalization, pollution, widening economic inequalities, and social insecurity. Most are employed in white collar jobs, constantly facing the fear of losing job due to care giving worsened by poor social support system.  Rural caregivers experience lack of access to therapeutic resources and nonexistent rehabilitative facilities and urban caregivers experience constrain of human resources and social support.  Thus, both the groups are facing different magnitude of problem with unique challenges of their own setting.
| Caregiving Facilities|| |
In general, there is a dearth of mental health professionals in the country and to add to the misery, most are inequitably distributed in urban areas predominantly.  There is a huge difference in human resources and infrastructure related to mental health available for urban and rural caregivers. Quality of mental health services available to rural areas is plagued by the problems of poverty, geographic isolation, low literacy, stigma, discrimination, cultural differences, limited accessibility, and availability of health resources. In terms of infrastructure, only 31.9% of all government hospital beds are available in rural areas as compared to 68.1% for the urban population. At the national level the current bed-population ratio for government hospital beds for urban areas (1.1 beds/1000 population) is almost 5 times the ratio in rural areas (0.2 beds/1000 population). ,, In terms of human resources, psychiatrist/population ratio for the 68.84% of country's rural population is 1 for every million.  There is a shortfall of 8% of doctors in Primary Health Centers, 65% of specialist at Community Health Centers, 55.3% of male health workers, 12.6% of female health workers  and virtual absence of nonmedical mental health professionals e.g., psychologist, psychiatric social worker. Probably, keeping these issues in mind, National Mental Health Programme (NMHP) was drafted in 1982 with the aim to bridge treatment gap and make mental health accessible to all. However, it is successfully running only in States of Kerala, Karnataka, and Gujarat; rest other places still it has not been able to address the issue to a significant extent. In the primary care general health services, the private sector carries the maximum service load amounting to 40-60% of all service delivery which many a times are not affordable for rural caregivers.  Caregivers travel long distance to access government facilities. Apart from these two, Non Governmental Organizations (NGOs) are also hardly available, most are in urban areas and Southern part of India. Nav Bharat Jagriti Kendra and Hazaribagh are one of the few organizations working in rural areas in few Districts of Bihar and Jharkhand.  Even till date, therapeutic facilities despite being available since so long are not having adequate coverage and concept of rehabilitation services or caregiver support groupsis not even in distant thoughts. Rural services are still in a dismal state.
Contrast to the commonly perceived notion of luxurious life of urban areas, picture there is also not rosy. Undoubtedly in India, rural population is more than urban in numbers today, but the latter is on constant rise. If we look at the global trends, population is moving toward urbanizationat an alarmingly fast pace. For developing countries, speculated average annual growth rate by 2025 will be 20.3% and 0.4% for urban and rural areas, respectively.  Urban population of India in 1901 was 10.8%, 17.3% in 1951, 25.73% in 1991, and 31.2% as per last the census report; it is still expected to increaseup to 56% by 2025.  This continuously rising urbanization has led to deleterious effects on mental health due to increasing poverty, stress, violence, terrorism, drug abuse, migration, and absence of close knitted social support. As per the report of urban mental health project done in New Delhi, Chennai, and Lucknow, it was found that psychiatry bed and psychiatrists are in adequate number in urban areas but are inequitably distributed. Deficit is mainly of nonmedical mental health professionals. In specialist mental health services, governmentsector carries between half to two-third service load, private sector one-third to half and NGOs carry only 2-3% of service load. Rehabilitation services are available in only in handful of government institutes across country, few are available in private, but they are expensive. NGOs and caregiver support groups are available in few pockets of country and are doing a commendable job, but they are too predominantly distributed in Southern India, Maharashtra, and New Delhi. As per the urban mental health project report, NMHP is more inclined toward catering to the needs of rural population and separate provisions for urban mental health should be developed keeping in mind the differential needs and challenges. 
| Health Beliefs and Health Seeking Practices|| |
Rural India like other walks of life has different indigenous belief systems and practices for health too. Mental disorders are still considered to be due to some supernatural causation, breech of some taboo, bad deeds of past, sins of this life, characterological weakness, faulty dietary habits, or faulty parenting. They consider mental illness to be incurable and communicable. Hence the persons with mental illness are often subjected to punitive treatment and caregivers are subjected to social ostracization.  Accordingly, caregivers seek remedies through magico-religious practices in first place. Many also resort to undocumented traditional local systems of healing. Few resort to alternative system of medicines Ayurveda, Unani, Siddha, and Homeopathy.  Usually, faith healers or general physicians are the first contact. The widely prevalent magicoreligious beliefs associated with mental illness and lower literacy, especially in rural areas, poses significant social obstacles in seeking appropriate health care for psychiatric patients. Besides these, study conducted by Singh and Gupta in a rural area of Rajasthan also highlighted inaccessibility due to lack of transportation, unsympathetic attitude of the staff and shortage, or nonavailability of medicines locally as important reasons for not consulting mental health services. 
According to a study conducted in urban area of New Delhi, mental disorders were perceived as a health hazard and stress was perceived as the most common cause. However, upto one-fourth mentioned evil spirits/uparichakkar as the cause of mental illness. Almost one-fourth of the participants perceived that mental illness is transmitted from person to person (21%) and from the mother to her child (27%) like any other communicable disease. Most of the participants perceived that mental illness could be curable, but one-fifth of them (20%) perceived that these are not completely curable. Almost one-third (29%) perceived that these disorders can be prevented by keeping stress free environment. Caregivers reported that though community showed kind, nonstigmatizing but pessimistic attitude toward persons with mental illness and restrict social relationship with the family.  Another study conducted in an urban area of New Delhi showed psychiatrist as a first contact service provider followed by general physician. However, even in urban settings, nearly 30% of caregivers had consulted a traditional faith healer or an alternative medicine practitioner at some point of illness. 
| Stigma Toward Mentally Ill and Caregivers|| |
One of the important reasons for delay in treatment seeking across the globe has also been stigma faced by the caregivers. Negative stereotypes and prejudicial attitudes of society against mentally ill and their families are often reinforced by their media representation of mentally ill patients as unpredictable, violent, and dangerous. Families are subjected to critical remarks, reduced socialization, humiliation which increases distress in families and in turn affect the care in a negative way.
In a study done in Ethiopia, it was found that nearly 75% caregivers reported feeling stigmatized. Nearly 36.26% caregivers felt the need to keep the patients' illness secret, 36.26% avoided social events, and 36.97% felt shame or embarrassment about the patients' illness. Nearly 26.30% of the parents reported having blamed by society for patients illness. The study found significant difference in mean self-stigma score between urban and rural caregivers and found it to be positively correlated with supernatural explanation of mental illness. 
A similar study conducted by Jadhav et al. in 2007 in India reported higher stigma in rural caregivers, especially those with a manual occupation. Rural caregivers reported more punitive practices of society toward the persons with severe mental illness while the urban residents had a comparatively liberal view of same. Simultaneously an interesting finding suggesting dissonance between attitude and behavior was that despite the liberal views; a strong link was found between stigma and not wishing to work with mentally ill in urban areas whereas no such finding was seen in rural residents. Rather persons with mental illness and their caregivers could be absorbed in some unskilled work easily as compared to urban counterparts. ,
| Caregiver Burden and Coping Appraisal|| |
Family caregivers not only provide basic needs of care but also long-term assistance in housing, financial aid, and rehabilitation process.  With the negative stereotypical attitude of society and withering family support system due to changing social milieu, it becomes the onerous duty of already preoccupied caregiver to do the role juggling, manage life transitions, and roles overload. Previous studies have criticized caregiver burden to be a pejorative term with negative connotation as caring for a loved one can also be emotionally rewarding task for many,  but chronicity of it adversely affects physical andmental well-being. Factors that adversely affect caregivers are psychological and emotional distress; physical illness; curtailment of social activities; financial hardships and disruption of the family, social, and sexual relationships.
The WHO defines caregiver burden as the "the emotional, physical, financial demands, and responsibilities of an individual's illness placed on the family members, friends or other individuals involved with the individual outside the health care system. Objective burden refers to behavioral phenomenon, e.g., disruption of the caregiver's domestic routine social activities and leisure; social isolation; financial, and employment difficulties. Subjective burden refers to emotional strain on caregivers, e.g., fear, sadness, anger, guilt, loss, stigma, and rejection." 
Differences in perception of burden between rural and urban background have also been examined. No statistically significant difference was found in the psychological well-being and burden between urban and rural caregivers by Gupta et al. in 2014.  Ali and Bhatti reported similarly equal burden experienced irrespective of the residential settings.  However, somewhat different results were found by Ranga Rao, in a study from Bengaluru, which showed burden to be higher in urban caregivers. 
Besides the emotional burden, studies comparing economic burden in rural and urban settings have been done. Zhai et al. in 2013 reported that direct economic burden and total economic burden was higher for urban caregivers than rural.  Indian data indicated that direct economic burden (money spent on cost of drugs, loss of daily wages, etc.) was higher for urban caregivers whereas, indirect economic burden (e.g., time incurred in travelling up to health facilities) was higher for rural caregivers. 
Undoubtedly, caring for a mentally ill is a stressful experience, but more than the burden, it is the appraisal of one's own caregiving and coping strategies that may increase or decrease mental well-being. Of two types of coping strategies, problem solving coping strategy is better than emotion focused. There are studies in Indian setting comparing coping strategies of caregivers of physical and mental illness, but no study has compared residential settings within mental illness group. Findings from other developing countries with regard to caregiving appraisal show inconsistent results. A Study done on African-Americans documented positive caregiving appraisal and religious coping as a way of ameliorating negative impact of stress on caregiver's mental healthin rural area.  These findings are concordant with the findings of Chadiha et al. which report that positive appraisal comes mainly from caregivers residing in rural areas despite lack of community mental health services in rural areas. They explained their results on basis of the nature of caregivers, which were mostly females and mothers in rural areas who perceive this role as their responsibility than burden.  Findings of Mohammad et al. suggest large variations between rural and urban areas caregiving appraisal in a study done in Malaysia. Factors correlated significantly with positive caregiving appraisal were living in urban area, earning more than Malaysian Rupee 8000 per month and have had a relative who are married and possess greater life skill. Their data showed that caregivers living in urban area had more positive caregiving appraisal as compared to rural careers even though no relationship was found between psychological distress and area of residence. 
| Horizons Meet: Divided Yet United|| |
Urban and rural caregivers may be divided by geographical distances and challenges specific to their settings but both are united by the common bond of same duty and similar hardships. Both groups are struggling against the high tide of hardship to balance work, family and caregiving; jeopardizing and ignoring at times their own physical and emotional health. Despite implementation of NMHP across several rural and urban districts of country for more than a decade, it somehow has failed to strike a chord for tailor made service delivery. Services are yet to cover patient's panaromicneeds of different phases of illness. In this grim scenario, woes of caregivers are thought of but still turned a blind eye to when it comes to give them a share in service delivery and policy implementation.
| Conclusion and Future Recommendations|| |
It's the need of hour to raise voice for silent tormented whispersand start a drive of "caring for the carers." Urban and rural caregivers are just at the end of same spectrum. Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different for both the groups. These differences are important determinants of health seeking behavior. If taken well into consideration can help plan a holistic intervention for patients as well as caregiver's well-being. To address the prevailing inequalities, it is important to address these issues both at macro (state and national) and micro (regional and district) level. A paradigm shift from current "biomedical model" to"ethnographical model" is needed to bridge the gap. This is a call for empowerment of carers and increasing earnest efforts to bring resource constrained rural caregivers and urban caregivers elusive of social support, to the center of the fiscal policies.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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