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 Table of Contents  
Year : 2016  |  Volume : 32  |  Issue : 1  |  Page : 10-18

Caregiving and caregivers: Challenges and opportunities in India

Sri Shankara Cancer Hospital and Research Centre, Bengaluru, Karnataka, India

Date of Web Publication17-Feb-2016

Correspondence Address:
Prof. R Srinivasa Murthy
Sri Shankara Cancer Hospital and Research Centre, Shankar Mutt, Bengaluru - 560 078, Karnataka
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/0971-9962.176761

Rights and Permissions

Caregiving of persons with mental illness is challenging as sometimes it is demanding and at other times, it is fulfilling to caregivers. In India, family members are the caregivers for persons with mental illness as there are extremely limited alternative facilities and family members are preferred for caring. The changing social milieu in India such as urbanization and nuclear family is placing significant burden on family members. This article will discuss about the emotional dimensions of caregiving, importance of care receivers, utilizing the caregiving situations to address prevention of mental disorders, promotion of mental health, and fight stigma of mental disorders. In India, majority of the research is on the burden of caregiving on family members and there is less or no research on caregiving in different communities, population groups, and develop programs to make caregiving a positive experience on caregivers and caregiving. In India, there is a need to develop systems of sharing of skills, support, and supervision to caregivers in providing care to the individuals with chronic illnesses. This can minimize the stress of caregiving and maximize the positive feelings of caregiving.

Keywords: Caregiver, challenges, India, opportunity

How to cite this article:
Murthy R S. Caregiving and caregivers: Challenges and opportunities in India. Indian J Soc Psychiatry 2016;32:10-8

How to cite this URL:
Murthy R S. Caregiving and caregivers: Challenges and opportunities in India. Indian J Soc Psychiatry [serial online] 2016 [cited 2022 Oct 5];32:10-8. Available from: https://www.indjsp.org/text.asp?2016/32/1/10/176761

  Introduction Top

Caregiving is a complex health care activity. From an informal family level activity, it is becoming a major part of health care. There is a growing awareness of the mental health aspects of caregiving both in the economically rich and low- and middle-income countries. [1] It is this aspect of addressing the emotional dimensions of caregiving, in addition to importance to care receivers and to utilize the caregiving situations to address the prevention of mental disorders, promotion of mental health, and fight stigma of mental disorders that I will address in this article.

In India, caregiving is largely by the family members as there are extremely limited alternative institutional facilities and welfare supports for those with long-standing illnesses such as mental disorders, chronic illnesses such as diabetes and cancer. In addition, in India, most families prefer to care for the ill person at all stages of illness. However, the larger societal changes in the country are placing significant demands on the caregivers. Two of the changes making caregiving difficult are living in urban areas and living in nuclear families. The lack of a supportive community in urban areas and the limited resources in a nuclear family make caring a demand on the caregivers and places their mental health at risk.

This article will address: (1) The changing care situation for mental disorders and chronic illnesses; (2) the impact of caregiving on caregivers; (3) interventions to address mental health needs of caregivers; (4) an agenda for India to address this issue.

  Changing Care Situation for Mental Disorders and Chronic Illnesses Top

Over the past half century, the model for mental health care has changed from institutionalization of individuals suffering from mental disorders to a community care approach. This change is based both on respect for the human rights of individuals with mental disorders and on the use of updated interventions and techniques. The care of people with mental and behavioral disorders has always reflected the prevailing social values related to the social perception of mental illness. Through the ages, people with mental and behavioral disorders have been treated in different ways. They have been given a high status in societies which believe them to intermediate with gods and the dead. In medieval Europe and elsewhere, they were beaten and burnt at the stake. They were also locked up in large institutions. During the second half of the 20 th century, a shift in the mental health care paradigm took place, largely owing to three independent factors, namely (1) psychopharmacology made significant progress, with the discovery of new classes of drugs, particularly neuroleptics and antidepressants, as well as the development of new forms of psychosocial interventions; (2) the human rights movement became a truly international phenomenon under the sponsorship of the newly created United Nations, and democracy advanced on a global basis, (3) social and mental components were firmly incorporated in the definition of health of the newly established WHO in 1948. The above technical and sociopolitical events contributed to a change in emphasis from care in large custodial institutions to more open and flexible care in the community. Community care is about the empowerment of people with mental and behavioral disorders. [2]

However, de-institutionalization has not been an unqualified success, and community care still faces some operational problems. Among the reasons for the lack of better results are that governments have not allocated resources saved by closing hospitals to community care; professionals have not been adequately prepared to accept their changing roles; and the stigma attached to mental disorders remains strong, resulting in negative public attitudes toward people with mental disorders.

Another important outcome of the shifting of care from institutions to community is that large part of the care is taken up by the informal caregivers. For example, in the USA, "the 3 million people currently in the home care workforce cannot meet even the current need, let alone the demand for care that will accompany the older boom. We will need at least 1.8 million additional home care workers in the next decade. As a result, caregiving, specifically home care, is the fastest growing of all occupations in the nation." [3]

In India, for want of public health services, both for mental disorders and chronic illnesses, the caregiving by family members is the norm.

In the World Health Organization, in a pyramid of optimal mix of mental health services, informal care (by caregivers) occupies the second most important care next to self-care at the bottom of the pyramid. [4]

There is a growing awareness of noncommunicable diseases (NCD) in India: [5] "India's epidemic of chronic diseases and injuries has already passed its early stages; the demographic and epidemiological transitions that are in progress have important implications for individuals, families, communities, and the nation as a whole. The time to act is now. For universal health care to be achieved, the emerging agenda of chronic diseases and injuries should be a political priority and central to the national consciousness of India." Self-care and caregiving will be a vital part of care of this group of health conditions.

As most of the care of this group of disorders is "chronic" and will occur at homes rather than hospitals, caregiving will be an important aspect of care. It is these developments that call for examination of caregiving as an essential part of health care. There is a need to understand its potential and the required measures to meet the needs of the caregivers.

  Impact of Caregiving on Caregivers Top

There is a large body of research pointing to the emotional impact of caregiving in mental disorders and other "chronic" illnesses.

In India, almost all the persons suffering from schizophrenia illness are living with the families. [6] Thus, the understanding of the burden of care and developing interventions to ameliorate the burden of care is important in the Indian context and has been studied by a number of investigators. One of the earliest studies was in Chandigarh with families of persons diagnosed with schizophrenic illness. The impact and the caregivers and the need for support were the chief observations of this community study. [7] Sandhu [8] provides the first novel describing the "live-in" experiences of a son and father struggling to cope with the ill family member suffering from paranoid schizophrenia. This descriptive account is an important contribution to understand the real life of the ill persons and their families. The vital role of professionals comes through vividly in the following statement, "I understand that psychiatrists are not God, but for the helpless caregivers they are nearly like God." [8] He makes the point "as doctors, we must realize that we are only one vertex of the pyramid, the patient being the other. The third vertex, the caregiver, is important, very important if the pyramid of health care has to stand tall" (p. 69). Addlakha [9] describes a case study of a female with chronic mental illness from a lower middle class urban family in New Delhi. Rammohan et al. [10] studied 24 parents and 24 spouses of persons suffering from schizophrenia. Spouses reported greater emotional burden. Parents used more of denial as a coping strategy, whereas spouses used more of negative distraction strategies. Patients' age, educational level, level of functioning, and caregiver's use of denial as coping strategy emerged as significant predictors of caregiver burden. Trivedi et al. [11] and Kalra et al. [12] report on the family burden of key caregivers of schizophrenia from Lucknow. Kalra et al. [12] studied 30 persons suffering from schizophrenia and 50 persons suffering from obsessive compulsive disorder. There was a direct correlation between burden and severity of disability and degree of psychopathology. Suresh Kumar [13] studied 140 patients of schizophrenia from rural Karnataka and reported a significant direct correlation between disability and psychopathology on the one hand and level of burden on the other hand. Duration of treatment had inverse correlation with burden. Disability in patients was the most significant factor contributing to burden. NIMHANS, Bengaluru, carried out qualitative studies of caregivers. [14] Thirty caregivers of inpatients with schizophrenia participated in 5 focus group discussions (FGD), where the needs of the caregivers were discussed. The FGDs were recorded, transcribed, and similar needs were grouped and ranked according to their order of importance. The main needs that emerged were needs regarding managing behavior of patients (29%), managing social-vocational problems of patients (21%), health issues of caregivers (18%), education about schizophrenia (15%), rehabilitation (13%), and managing sexual and marital problems of patients (5%). Authors describe this as the pyramid of needs of caregivers. All family caregivers who attended the FGD emphatically stated that they required help in managing all their needs and expressed their willingness to participate in any training that addressed their needs. The complex role played by the family in the care is reported by Srinivasan and Thara [15] with regard to noncompliance for medication in acutely ill patients of schizophrenia. The experience is based on 254 outpatients, of which 58% were noncompliant for medication. In this group, families administered medicines without patients' knowledge, under the supervision of the psychiatrist. In a great majority of patients who were given involuntary medication, the family observed a reduction in the severity of symptoms and further able to convince the patient to take oral medication subsequently. In 26% on such medication, patients came to know and of these two-thirds expressed anger and resentment whereas the others accepted without any reaction. Of the caregivers, there were three types of reactions. More than half (55%) of them felt it was the right action under the circumstances. Another 41% recognized it as a practical one in the absence of any alternatives whereas 4% reported that the method was not appropriate. Authors discuss the issues of risks and benefits, patients', family, professional, and ethical perspectives. Nehra et al. [16] compared caregiver-coping in bipolar disorder (bipolar affective disorder [BPAD]) and schizophrenia and explore the determinants of such coping in fifty patients each of BPAD and schizophrenia and their caregivers. High levels of patient dysfunction and caregiver burden, low awareness of illness, and low perceived control over patient's behavior were characteristics of both BPAD and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often.

Among the NCDs, the vital role of caregivers in the Indian context comes from the large literature on cancer care. [5] The Indian Cancer Society publication, "there is life after cancer" [17] presents the experiences of 34 persons/families diagnosed with cancer. Here are some excerpts relating to caregiving from these narratives.

Ms. Shikha Shaukeen and Ms. Raj Rani place the complimentary roles of the patients and caregivers beautifully as follows: [17] "It is the survivor and the caregiver who together fight the battle, each offering love, support, and encouragement to the other. There is suffering and pain, some shared and a lot kept from the other. No one but the survivor undergoes the physical pain, fear, and trauma that the cancer patient is faced with; the caregiver's pain is mental and emotional. Not only does the caregiver help with the loved one's needs and treatment, often taking critical decisions, she/he has to be strong one offering emotional support at a time when she/he is hurting too. It is not easy to evaluate the contribution made by a caregiver in contributing to the well-being of the patient and restoring his/her confidence and faith. The caregiver applies a soothing balm to the lacerated psyche of the patient by giving loving care. In fact, the doctor and the caregiver make an excellent team; the former treating the patient's physical sickness and the latter by restoring the patient's shattered self-confidence and morale" (p. 181).

Few of the other narratives of caregiving from India, are Ms. Anuradha Mittal [17] shares the following feelings: as caregivers, we also went through all the stages of shock, denial, anger, helplessness, and finally acceptance. The moment the word "cancer" is announced, your peaceful world is suddenly shattered. Everything seems to fall apart and the first reaction is "it means the end of the road" (p. 13). In another narrative, Ms. Gurpreet Khaira [17] shares, "the most important thing was that I was getting the full support from my husband and both of my daughters" (p. 36). Ms. Karuna Puri [17] writes, "it was my husband's will power that helped me in my battle against cancer.… He slept in my room throughout my sickness. He was there for me whenever I needed him" (p. 91).

Three recent Indian memoirs of caring for a family member with dementia and bipolar disorder describe the challenges of caregiving in the Indian situation, as follows.
"Patient with dementia becomes unhygienic. Same thing happened with Dadoo. A couple of years back, he had started hating changing clothes, cutting nails, washing hands, and this irritated Mamma to no end. "I learnt many bad things about myself," Mamma told me 1 day, "it never occurred to me that there will be times when I would not love him. All this gandagi (filth) makes me so angry with him that sometimes I hate him for it. I am besides myself with anger when he blows his nose and throws the snot on the floor, wipes his hands on his pyjamas after eating food, picks salad, and cut fruit with his dirty hands." Giving him clean clothes had become a mission. Sometimes, Mamma would hide soiled clothes, sometimes she would dip them in water on some excuse or the other, sometimes she would fight with him, and there would be loud arguments whether or not the clothes were dirty." [18]

Pinto describes his mother's illness in The Hindu Literacy Award book, "Em and the Hoom" [19] and what it meant to the family: "It was the worst possible nightmare we could conceive because we had no idea what we would do if we had to do it all over on our own; monitor her pills, decide when she went to hospital, hold on to her life with a daily promise, pay her bills, take her raging or desperate calls earn a living" (p. 171).

Even upper class families experience a wide range of stresses: "Caregivers confront a fascist psychology. As Krishna's condition became critical from November 2009 onward, her illness was not the only adversity I faced. Additional problems confronted in the form of what can be called the 'proto-fascist' attitude of some who were solicitous, but uncompromising in their belief that all efforts to give her the best possible care were meaningless. They seem to be less interested in Krishna's life rather, let us say they were more interested in her death." [20]

  International Scene Top

The needs of caregiving were summarized by the World Federation of Mental Health review as follows:
"Caregivers are also less healthy than noncaregivers and have more chronic illnesses such as high blood pressure, heart disease, diabetes, and arthritis than noncaregiving peers. They may also suffer from poorer immune function and exhaustion. They may neglect their own care and have higher mortality rates than noncaregivers of the same age. Given these odds, caregivers need to take good care of themselves and to reduce their level of stress, depression, and anxiety." [1]

The National Cancer Institute (USA) recognizes the needs of caregivers as follows:
"It's just as important for caregivers to take care of their own health at this time. Family caregivers are affected by their loved one's health more than they realize. Taking care of a sick person often causes physical and emotional fatigue, stress, depression, and anxiety. Because of this, it is important for caregivers to take care of their own body, mind, and spirit. Helping themselves will give them more energy, help them cope with stress, and cause them to be better caregivers as a result." [21]

The challenges of caregivers training and supervision are present also in the advanced countries. In a recent excellent document of over 700 pages relating to child care from birth to 8 years, the Institute of Medicine (IOM) [22] refers to the need as follows:
"The current state of the care and education workforce for these children is one of the most telling indicators of this fragmentation. Despite their shared objective of nurturing and securing the future success of young children, these professionals are not acknowledged as a cohesive workforce, unified by their shared contributions, and the common knowledge base and competencies needed to do their jobs well. They work in disparate systems, and the expectations and requirements for their preparation and credentials have not kept pace with what the science of child development and early learning indicates children need. Care and education for young children take place in many different programs and settings, with different practitioner traditions and cultures; funded through multiple governmental and nongovernmental sources and operating under the management or regulatory oversight of diverse agencies with varying policies, incentives, and constraints. Strengthening the workforce to better reflect the science is challenging given this complex, and often decentralized, oversight, and influence."

  Approaches to Address Mental Health Needs of Caregivers Top

Majority of the persons suffering from schizophrenia are living in the community and mostly with their families in India [6] and other developing countries. It is for this reason, as noted in the earlier section, families have been an important part of the care of the ill persons. During the last two decades, the movement of empowerment of the families has taken a number of directions. There have been two national level carer workshops at Chennai in 2001 and 2005 to understand the needs and experiences of carer groups. A National Alliance has been formed of these voluntary groups. At a number of centers, there have been efforts to develop educational materials (e.g., we are not alone from Amend from Bengaluru), to form self-help groups (Bengaluru, Chennai, New Delhi, Gauhati, Pune, Kolkata, Mumbai etc.), [23] and to take up advocacy activities.

Interventions to address the emotional needs of caregivers have been undertaken by a number of investigators. Most of the efforts have been in the areas of dementia and cancer. Two recent reports are significant.

Livingston et al. [24] recognizing two-thirds of people with dementia live at home supported mainly by family carers and these carers frequently develop clinical depression or anxiety, which predicts care breakdown, the intervention was planned to assess the clinical effectiveness (long-term reduction of depression and anxiety symptoms in family carers) and cost-effectiveness of a psychological intervention called STrAtegies for RelaTives (START). It is a randomized, parallel-group trial with masked outcome assessments in three UK mental health services and one neurological outpatient dementia service. Carers were randomly assigned to either START, an 8-session, manual-based coping intervention delivered by supervised psychology graduates or treatment as usual (TAU). The primary long-term outcomes were affective symptoms, 2 years after randomization, and cost-effectiveness (health and social care perspectives) over 24 months. Two hundred and sixty carers were recruited. One hundred and seventy-three carers were randomly assigned to START and 87 to TAU. Of these 260 participants, 209 (80%) were included in the clinical efficacy analysis (140 START, 69 TAU). At 24 months, compared with TAU, the START group was significantly better for depression and anxiety scores. Carers in the control TAU group were 7 times more likely to have clinically significant depression than those receiving START. The intervention was cost-effective for both carers and patients. Authors conclude that START is clinically effective, improving carer mood and anxiety levels for 2 years. This cost-neutral intervention, which substantially improves family carers' mental health and quality of life (QOL), should therefore be widely available.

Leow et al. [25] evaluated the effectiveness of a psychoeducational intervention, the Caring for the Caregiver Program (CCP) in cancer care in a randomized, controlled trial, two-group pretest and repeated posttests. Four home hospice organizations and an outpatient clinic in Singapore were the setting for the study. Eighty caregivers were randomized into experimental and standard care groups. Outcomes were measured at baseline, week 4, and week 8 after the intervention. The standard care group received routine home hospice care and the intervention group received the CCP in addition to routine care. QOL, social support, stress and depression, self-efficacy in self-care, closeness with the patient, rewards, and knowledge were studied. Compared to the standard care group, the intervention group reported significantly higher QOL, social support satisfaction and number of supported people, closeness with the patient, self-efficacy in self-care, rewards of caregiving and knowledge, and lower stress and depression. Authors conclude that the CCP had positive effects on family caregivers of patients with advanced cancer.

  Agenda for Action in India Top

As reviewed in the earlier section, there are a large number of aspects of caregiving. [1],[7],[21] Caregiving and caregivers will be a growing part of health care all over the world and in India.

Till now, caregivers have been seen as an easy alternative to meet the "unmet" health care. This was reflected in the way families were brought into mental health care by Dr. Vidyasagar in the 1950's: He encouraged the relatives to stay with the patient during the treatment period. To accommodate the relatives of patients, he pitched tents within the hospital grounds for their stay. He also encouraged them to participate in the daily nursing care of the patients and by doing this, to learn about managing medication and caring skills. [26]

At the Mental Health Centre, Vellore, when they started making it a policy to admit patients along with a relative, "the close participation of the relatives in the treatment of the patient provides an opportunity to give them a better understanding of the peculiarities of the individual case. Through spread of this knowledge into wider circles of the public, a general education in the matters of mental health is effected…. Other important factors that led to this type of inpatient care were the difficulty in getting enough number of experienced nurses and attendants as well as the cost of maintaining satisfactory 24 h care of the disturbed patients." [27]

Similar was the focus of starting of family ward at NIMHANS, Bengaluru, "our experience of treating patients in the family ward has been very gratifying. Treatment of the patient in the family unit prevents the separation of patient from his family during therapy, prevents chronicity, lessens the length of stay of the patient in the hospital, and also helps in lessening the stigma attached to mental illness. The family situation could be understood better which helps in instituting effective and long lasting therapy. The problems of rehabilitation and readjustment with family and community are facilitated. This is one of the most effective ways of spreading the knowledge of mental health in the community at large." [28]

However, in the last seven decades, we have not really looked at what caregiving means to the caregivers. It was two decades back, Prabhu [29] had this to say about this issue: "It is high time that one evaluates the strengths and weaknesses of the oriental family and its ability to care for the mentally disabled persons" and similar was the observation of Radha Shankar. [30] "There is limited holistic understanding of both the difficult circumstances under which relatives look after persons with serious mental illness, as also the emotional and practical challenges they face through the different phases of the illness. Consequently, families receive limited support and guidance from professionals, suggesting that mental health establishment often regards family members as low cost, plentiful resource in the community, who are required to offset the limitations of a poorly funded mental health system. However, if these primary care providers have to offer long-term sustainable care, it is both ethical and imperative that their needs have to be understood and addressed in a systematic manner.… Family caregivers need to be supported and nurtured through programs of information and guidance and practical assistance (emphasis added)."

The situation in 2015 remains largely the same. In addition, in individual patient-level caregiving, there are a similar growing number of caregivers in alternative mental health care facilities. [6],[31]

There are five issues that need urgent attention in India.

First, recognizing that nonspecialists, people trained for short periods for a specific mental health task, and volunteers will be an essential part of the mental health care in India, there is a need to bring these groups of personnel into a system. [32] Currently, there is no system to organize/regulate this group. Literally, anyone can start a counselor course of few days to few months and give them the label of "counselor" to provide mental health care. There is a need to "organize" this field. The essence of it would be identify the "level of care," "limits of care," and the support and supervision mechanism. [33] In the course of next few years, a degree of regulation and licensing should be developed. This is a challenge seen from the IOM document on child care workers. It is possible to develop systems of training, support, and supervision, which is demonstrated by the United Kingdom experience of "increasing availability of psychological therapies." [34] The first step in India is to document the experiences of caregiving in these alternative settings of mental health care. [6]

Second, caregiving in India occurs with no specific "sharing of skills" with caregivers' family members. Most of the past efforts have been on information sharing. There is a need to move the agenda of this area to develop and share specific skills of care as essential care programs of mental health care. There is some initial success in this area in the area of substance abuse, especially by TTR foundation [35],[36],[37],[38] and for alcohol abuse and parenting by NIMHANS, Bengaluru. [39],[40],[41],[42] There is a need to develop similar educational materials for each of the mental disorders in all of the states and union territories in a culturally and linguistically suitable manner. A successful addressing of these caregiving resources would address a large "unmet need" of mental health care in India.

Third, as reviewed in the earlier section, there is an emotional cost to the caregiver. There are also good examples of interventions to minimize the impact. There is a need to develop and provide self-care for maintaining emotional health when a person is a caregiver. During the last 3 years of my own journey with cancer [43] and in my current work with persons diagnosed with cancer and their families, I realized this need as an important one. This has resulted in the development of a method of sharing self-care skills is attached as Appendixes 1 and 2 . There is a growing body of research to evaluate such programs in different countries. [44] Successful efforts will not lead to better mental health of caregivers, but also "normalize" mental health care and decrease the stigma of seeking mental health care both for themselves and to their family members. The growth of information, communication technology allows for both development of these skills sets and disseminating them to all those who need. [37],[38],[45][Additional file 1][Additional file 2]

Fourth, there is a need for mental health professionals to take up "self-care" as an essential part of all care interactions with patients/families. Such a sharing of emotional health skills will result in dramatic increase in the spread of mental health skills from the thousands of professionals to millions of persons with mental disorders and their families. In addition, this could be the best way to fight the stigma of mental disorders, as "normal" individuals use mental health skills as part of their daily life, they will be less stigmatizing of those with mental disorders. [44]

Fifth, there is an urgent need for research to be an essential part of the above four initiatives. Too often, in India, mental health professionals have responded to a need with an innovative approach to care, without going onto examine the interventions in a systematic manner toward establishing knowledge base for the innovation and policy development. [6]

  Priority Research Topics about Caregiving Top

  • Study of the impact of macro-level changes in the society on family life and the needs of families when there is a mentally ill person in these changing situations
  • Understanding of the current "live-in" situation and practices of Indian families living with a mentally ill person, chronic illness, across different social and economic groups to provide care that is appropriate to the ill persons and their families
  • Studies of the burden on the family need to be carried out and it should be examined if the burden is felt differently in the families of different socioeconomic as well as educational background
  • Studies of characteristics of caregivers and their effectiveness in caregiving
  • Preparing psycho-educational material suitable to Indian ethos
  • Self-evaluation emotional health tools for use by caregivers
  • Understanding the needs of nonspecialist personnel in caregiving and the needed supports/supervision for their optimum functioning
  • Importance of welfare services to meet the needs of the caregivers
  • Use of mobile phones to share skills, support caregivers, and networking of caregivers
  • Evaluation of the cost-effectiveness of different interventions to minimize the impact of caregiving on caregivers
  • Study of traditional systems of promotion of mental health such as yoga and meditation for caregivers
  • Study of positive aspects of caregiver growth as a result of caregiving experiences
  • Stigma experiences of caregivers, especially in dementia, cancer, alcoholism, schizophrenia, intellectual disability, and measures to fight the stigma.

  Conclusion Top

Health care in India is in a flux, with a desire for universal health coverage for all health conditions [5] and for mental and neurological disorders. [46] In the current context of limited health care coverage, caregiving by family and nonprofessionals will be an important part of health care in India. This necessitates attention being paid to caregiving and caregivers. Caregiving can be demanding on the caregiver. Caregiving can also be fulfilling for the caregiver. Caregivers' emotional health is important not only for the caregiver, but also for the care receiver. The goal should be to minimize the stress of caregiving and maximize the positive feelings of caregiving. For health care in general and mental health and "chronic illness" care, in particular, there is an urgent need to fully understand the caregiving in different communities, population groups, and develop programs to make caregiving a positive experience. In a recent reference to emerging India, Forbes India (January 09, 2010) observed "first world India is an increasingly popular concept. Much has been made of how our time as a country has arrived; of how we are at an inflection point in our history. But how are we going to translate this potential into performance?"

As in other areas, India has the opportunity to build upon the strength of the caregiving commitment of Indian families and the experiences of the West to make caregiving an important component of health care in the country. By developing systems of sharing of skills, support, and supervision to caregivers, in providing care to the individuals with chronic illnesses, India could contribute to health care in the world. This could be India's important mental health contribution to the rest of the world.


My sincere thanks to Prof. N. N. Wig, Emeritus Professor of Psychiatry, PGIMER, Chandigarh, for his support and suggestions about the earlier thoughts in this area. Dr. K. S. Raghavan, Hyderabad, enriched my thoughts on this topic by his insights as a professional and caregiver. Finally, to all the families I have had the opportunity to work with in the last four decades for sharing their personal journeys of caregiving.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

  References Top

World Federation of Mental Health (WFMH). Caring for the Caregiver. Woodbridge, USA: World Federation of Mental Health; 2013.  Back to cited text no. 1
World Health Organisation (WHO). World Health Report-2001: Mental Health-New Understanding, New Hope. Geneva, Switzerland: World Health Organisation; 2001.  Back to cited text no. 2
Poo A. The Age of Dignity - Preparing for the Elderly Boom in a Changing USA. New York: The New Press; 2015.  Back to cited text no. 3
World Health Organisation. Mental Health Action Plan (2013-2020). Geneva, Switzerland: World Health Organisation; 2013.  Back to cited text no. 4
Patel V, Chatterji S, Chisholm D, Ebrahim S, Gopalakrishna G, Mathers C, et al. India: Towards universal health coverage 3-chronic diseases and injuries in India. Lancet 2011;377:413-28.  Back to cited text no. 5
Srinivasa Murthy R. Schizophrenia: Epidemiology and community aspects (1996-2010). In: Kulhara P, Avasathi A, Grover S, editors. Schizophrenia - The Indian Scene. Ch. 4. Chandigarh: PGIMER; 2010. p. 57-112.  Back to cited text no. 6
Suman C, Baldev S, Murthy RS, Wig NN. Helping the chronic schizophrenic and their families in the community-initial observations. Indian J Psychiatry 1980;22:97-102.  Back to cited text no. 7
[PUBMED]  Medknow Journal  
Sandhu A. Sepia Leaves. New Delhi: Rupa Publications; 2008.  Back to cited text no. 8
Addlakha R. An ethcography of family burden and coping strategies in chronic schizophrenia. Indian J Psychiatry 1999;41:91-5.  Back to cited text no. 9
[PUBMED]  Medknow Journal  
Rammohan A, Rao K, Subbakrishna DK. Burden and coping in caregivers of persons with schizophrenia. Indian J Psychiatry 2002;44:220-7.  Back to cited text no. 10
[PUBMED]  Medknow Journal  
Trivedi JK, Nischal A, Sinha PK, Dhyani M. Burden of care caregivers of schizophrenia: A study from Northern India. Aust N Z J Psychiatry 2006;40:A134.  Back to cited text no. 11
Kalra H, Nischal A, Trivedi JK, Dalal PK, Sinha PK. Extent and determinants of burden of care in Indian families: A comparison between obsessive-compulsive disorder and schizophrenia. Int J Soc Psychiatry 2009;55:28-38.  Back to cited text no. 12
Suresh Kumar PN. Impact of vocational rehabilitation on social functioning, cognitive functioning, and psychopathology in patients with chronic schizophrenia. Indian J Psychiatry 2008;50:257-61.  Back to cited text no. 13
[PUBMED]  Medknow Journal  
Jagannathan A, Hamza A, Thirthahalli J, Nagendra HR, Hapipraqsad VR, Gangadhar BN. Need of Family Caregivers of Inpatients with Schizophrenia in India, Poster Presentation at the Third International Conference on Schizophrenia, Chennai; 17-19 October, 2008. p. 48.  Back to cited text no. 14
Srinivasan TN, Thara R. At issue: Management of medication noncompliance in schizophrenia by families in India. Schizophr Bull 2002;28:531-5.  Back to cited text no. 15
Nehra R, Chakrabarti S, Kulhara P, Sharma R. Caregiver-coping in bipolar disorder and schizophrenia - A re-examination. Soc Psychiatry Psychiatr Epidemiol 2005;40:329-36.  Back to cited text no. 16
Govil J, editor. Indian Cancer Society (ICS) There is hope after cancer. New Delhi: Vitasta; 2013.  Back to cited text no. 17
Chaudhury M. World Within. Kindle Edition. Hay House, New Delhi: Amazon Books; 2015.  Back to cited text no. 18
Pinto J. Em and the Big Hoom. New Delhi: Aleph; 2012.  Back to cited text no. 19
Samaddar R. Krishna, Living with Alzheimers. New Delhi: Women Unlimited; 2015.  Back to cited text no. 20
National Cancer Institute (NCI). Support for Caregivers: When Someone You Love Has Advanced Cancer. Bethesda, USA: US Department of Health and Human Services; 2014.  Back to cited text no. 21
Srinivasan N. We are not alone-family care for persons with mental illness. Bangalore: Action for Mental Illness (ACMI); 2008.  Back to cited text no. 22
Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, King D, et al. Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: A single-blind, randomised, controlled trial. Lancet Psychiatry 2014;1:539-48.  Back to cited text no. 23
Leow M, Chan S, Chan M. A pilot randomized, controlled trial of the effectiveness of a psychoeducational intervention on family caregivers of patients with advanced cancer. Oncol Nurs Forum 2015;42:E63-72.  Back to cited text no. 24
Institute of Medicine (IOM). Transforming the Workforce for Children Birth through Age 8: A Unifying Foundation. Washington: National Academy Press; 2015.  Back to cited text no. 25
Carstairs GM. In community action for mental health care. WHO/SEARO/MENT/22. New Delhi: Who-Searo; 1974.  Back to cited text no. 26
Kohlmeyer WA, Fernandes X. Psychiatry in India: Family approach in the treatment of mental disorders. Am J Psychiatry 1963;119:1033-7.  Back to cited text no. 27
Narayanan HS, Reddy GN. Review of treatment in family ward. Indian J Psychiatry 1968;14:123.  Back to cited text no. 28
Prabhu GG. Foreword - Innovations in Psychiatric Rehabilitation. Bangalore: Richmond Fellowship of India; 1995. p. 5-8.  Back to cited text no. 29
Shankar R. Interventions with families of people with schizophrenia in India. New Dir Ment Health Serv 1994;62:79-88.  Back to cited text no. 30
Thara R, Patel V, editors. NGOs in mental health: Meeting the need? In: Meeting Mental Health Needs of Developing Countries: NGO Innovations in India. New Delhi: Sage (India); 2003.  Back to cited text no. 31
Srinivasa Murthy R, editor. Mental health by the people. Bangalore: Published by Peoples Action for Mental Health; 2006.  Back to cited text no. 32
Murthy SR. Human resources for mental health care in India - Challenges and opportunities. Indian J Psychiatry 2004;46:361-6.  Back to cited text no. 33
[PUBMED]  Medknow Journal  
Layard R, Clark DM. Thrive - The Power of Psychological Therapy. U.K: Penguin; 2014.  Back to cited text no. 34
Ranganathan S. The empowered community: A paradigm shift in the treatment of alcoholism. Madras: TTR Clinical Research Foundation; 1996.  Back to cited text no. 35
Ranganathan S. Treatment for alcoholism - The community approach. Chennai: TT Ranganathan Clinical Research Foundation; 2011.  Back to cited text no. 36
Jayaraman R, Ranganatha S. I plan and I can - Tips and tools for personal recovery. Chennai: TT Ranganathan Clinical Research Foundation; 2011.  Back to cited text no. 37
Jayaraman R, Kanakam U. Getting out of alcoholism-my personal recovery tools. Chennai: TT Ranganathan Clinical Research Foundation; 2010.  Back to cited text no. 38
Nattala P, Murthy P, Nagarajaiah. Relapse prevention in alcohol dependence: A family based approach - Treatment provider′s manual. Bangalore: National Institute of Mental Health and Neurosciences; 2013.  Back to cited text no. 39
NIMHANS. H2H (Help to Help) women partners of men with alcohol dependence: A counselling manual. Bangalore: National Institute of Mental Health and Neurosciences; 2014.  Back to cited text no. 40
NIMHANS. Relapse Prevention in Alcohol Dependence-My Workbook. Bangalore: National Institute of Mental Health and Neurosciences; 2014.  Back to cited text no. 41
Seshadri S, Rao N. Parenting: The Art and Science of Nurturing. Delhi: Byword Books; 2012.  Back to cited text no. 42
Srinivasa Murthy R. Lessons of being a patient - Psycho-oncology in India. Mens Sana Monogr; 2016. [In Press].  Back to cited text no. 43
Srinivasa Murthy R. Self-care for mental health - The new frontier. In: Saha G, editor. Different Strokes. 2 nd ed. Kolkata: Indian Psychiatric Society; 2016.  Back to cited text no. 44
Srinivasa Murthy R. The stigma of mental illnesses-present situation and future perspectives. In: Psychiatry: Present Situation and Future Perspectives: Book in honour of Prof. Lopez Ibor; 2016. [In Press].  Back to cited text no. 45
Patel V, Chisholm D, Parikh R, Charlson FJ, Degenhardt L, Dua T, et al. Addressing the burden of mental, neurological, and substance use disorders: Key messages from Disease Control Priorities, 3 rd edition. Lancet 2015. pii: S0140-673600390-6.  Back to cited text no. 46

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