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 Table of Contents  
DEBATE
Year : 2016  |  Volume : 32  |  Issue : 1  |  Page : 19-24

Research on family caregiving for mental illness in India and its impact on clinical practice: Are we doing enough to help families?


Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India

Date of Web Publication17-Feb-2016

Correspondence Address:
Prof. Subho Chakrabarti
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Sector-12, Chandigarh - 160 012
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0971-9962.176762

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  Abstract 

Families of Indian patients with mental illnesses have always been involved in their care. Such involvement arises both from choice as well as the compulsion of being a part of an inadequately resourced mental health system. Regardless, families have had to pay a heavy price for undertaking the task of providing care. An extensive body of Indian research on caregiver burden in a number of mental illnesses shows that providing care for a relative with mental illness is associated with considerable distress and burden for the family caregiver. However, much of this research has not made the shift from the somewhat outmoded concept of caregiver burden to the currently prevalent practice of considering the caregiving experience in its totality. Moreover, most of the research is not driven by contemporary theories of caregiving such as the stress coping model. Indian psychiatry has also had a long tradition of supporting family caregivers while they provide care for their ill members. Nevertheless, the Indian evidence for the efficacy of formal family-based interventions remains inadequate and lacks methodological precision. Finally, day-to-day practice in clinical settings does not seem to have made use of the ample body of research evidence in this area to help families in distress. Despite all these problems, progress is being made in the area of family caregiving for mental illness in India. Despite all these problems, slow but steady progress is being made in the area of family caregiving for mental illness in India. It can be hoped that some day in the near future, this progress would translate into mental health professionals forging a true partnership with families providing care for those with mental illnesses.

Keywords: Family caregiving, India, mental illness


How to cite this article:
Chakrabarti S. Research on family caregiving for mental illness in India and its impact on clinical practice: Are we doing enough to help families?. Indian J Soc Psychiatry 2016;32:19-24

How to cite this URL:
Chakrabarti S. Research on family caregiving for mental illness in India and its impact on clinical practice: Are we doing enough to help families?. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Jan 23];32:19-24. Available from: http://www.indjsp.org/text.asp?2016/32/1/19/176762


  Introduction Top


Families of Indian patients have always been partners in care for their relatives with mental illnesses, and in many instances, the mainstays of such care. It appears that this extensive involvement of families in care is driven both by choice as well as compulsion. [1] The woefully inadequate mental health infrastructure and resources of this country virtually compel families to become caregivers of the first as well as the last resort. National health policies have also tried to ensure that the family remains as the primary care provider. Family caregivers are called upon to provide support to their patients not only during periods of hospitalization, but also during their stay in the community. The family is often called upon to undertake caregiving tasks usually carried out by professional staff in the more resource-rich countries. [2] However, there are other reasons why Indian families choose to commit themselves to care. These include a culturally determined emphasis on kinship obligations, nonmedical explanatory models of mental illness, and a tradition of families playing a preeminent role in all decisions regarding treatment. This natural preference of families to be involved in the care of their mentally ill kin is encapsulated by what has been referred to as the "cure versus care" dichotomy, where family members believe that it is the duty of professionals to cure their patient, while providing care is their responsibility. [1] Not surprisingly, the family's role as a vital resource in the care of those with mental illnesses has always been welcomed by mental health professionals, and the need to support them in this onerous task has been repeatedly stressed. [3],[4],[5],[6] Then again, how much has been achieved in terms of providing effective support to family caregivers is a matter of considerable debate. This article intends to briefly consider several aspects of research on family caregiving in India and its impact on routine clinical practice to inform this debate.


  Family Caregiving for Mental Illness in India: The Research Top


Caregiver profiles

Family caregiving is a term used for unpaid care provided by family members or friends for persons with chronic illnesses or functional impairment. [7] All over the world, women are the predominant providers of informal care for family members with mental illnesses, though men are increasingly assuming roles as caregivers. Worldwide, caregivers of the elderly with dementia are usually their wives or daughters. They are customarily middle-aged with a considerable proportion of them being elderly themselves. Caregivers of patients with schizophrenia or mood disorders are usually their parents, mostly mothers of patients, and they too are often aged. [7] It can be assumed that caregivers of people with mental illnesses in India follow a similar profile. However, this assumption can be seldom be backed up by reliable data. The majority of studies on caregivers of patients with schizophrenia and mood disorders are hospital-based. The biased samples of these studies are not expected to be representative of the entire population of caregivers. [8] Nevertheless, a few community studies on the subject (e.g. Janardhana et al. [9] ) do show that women predominate as caregivers, but the number of male caregivers is increasing. Most caregivers are middle-aged or elderly and are commonly parents of patients. The number of community-based studies on dementia is somewhat more. These show that much like the West, most caregivers in India are older women caring for their husbands or younger women caring for their parents. However, adult children appear to outnumber spouses as caregivers. Consequently, caregivers are more often middle-aged than elderly. [10],[11] The lack of good quality Indian data on caregivers' profiles is disappointing. It is abundantly clear that this piecemeal approach to documenting caregiver demographics is not sufficient. Instead, a national database on caregivers of those with mental illnesses on the lines of the reports of the National Alliance for Caregiving, USA, is sorely needed. [7]

Assessment of caregiver burden

One of the earliest questionnaires to measure caregiver burden, the Family Burden Interview Schedule (FBI), was developed in India. [1],[8] This has proved to be an excellent measure of objective burden and has been widely used among caregivers of patients with schizophrenia, mood disorders, and other psychiatric illnesses. However, its assessment of subjective burden by a single standard question is considered to be somewhat inadequate. The other scale, the Burden Assessment Schedule (BAS), was supposed to be an improvement on the FBI, but by bringing in the elements of social support and coping while assessing for caregiver burden, it tends to dilute the original concept. [8] Conventionally, a distinction has often been made between the constructs of subjective and objective burden. Objective burden refers to the consequences of the patient's illness on the family, which are quantifiable and measurable, whereas subjective burden refers to the caregiver's own perception of the impact of providing care and consists of the negative psychological impact on the caregiver. [12] However, the differentiation of burden into objective and subjective aspects has proved difficult, since these are overlapping dimensions often difficult to operationalize and assess separately. Alternative formulations of caregiver burden have laid more stress on its subjective aspects and have conceptualized burden as being mainly based on perceptions of the caregiver. This has led to a proliferation of self-report questionnaires since the 1980s, and nowadays, burden is more commonly assessed by scales based on ratings by caregivers. One such instrument, the Involvement Evaluation Questionnaire (IEQ), relies on the caregiver's perceptions to assess burden without distinguishing between objective and subjective aspects. An attempt to construct a Hindi adaptation of the IEQ noted several differences in the factor structure and distribution of scores, which were quite unlike that of the original version. [12] This suggested that sociocultural factors could influence assessment of caregiver burden across different cultures. The two self-report scales of burden, which have undergone the most extensive testing for their cross-cultural applicability, are the Zarit Burden Interview and the IEQ. Incidentally, Indian studies of burden among caregivers of those with dementia have mainly used the Zarit Burden Interview (e.g. 10 and 11); some have used the FBI or the BAS. A study which compared clinician-rated burden using the FBI and caregiver-rated burden using the Hindi-IEQ in schizophrenia and mood disorders, found many areas of agreement as well as some significant discrepancies between the two assessments. [13] This suggests that a comprehensive evaluation of burden should include assessments by both clinicians and caregivers. It might take some effort to construct such an instrument, which is applicable to Indian settings and measures both objective aspects and caregivers' perceptions of burden comprehensively, but such a scale would certainly enhance the usefulness of Indian studies on caregiver burden.

Indian studies on caregiver burden

Worldwide, most studies of caregiver burden have been conducted among the elderly population with dementia or chronic physical illnesses, followed by studies among caregivers of schizophrenia. Studies involving patients with mood disorders and other psychiatric conditions are far fewer. [14],[15] The bulk of Indian studies are on schizophrenia, followed by mood disorders and other illnesses. [1],[8] An encouraging aspect is the emergence of studies among caregivers of the elderly, particularly those with dementia, largely due to the efforts of the 10-66 Dementia Research Group. [10],[11],[16],[17] The evidence from this large body of Indian studies clearly demonstrates the negative impact of providing care for someone with mental illness. It dispels earlier notions that the traditional joint family system (which is anyway on the wane) offers protection from the adverse effects of providing care. [1],[8],[10],[11],[16],[17],[18] Common aspects of caregiver burden include the effects on family life and financial burden. The effect on caregivers' mental health also appears to be considerable. Apart from minor differences, the extent of caregiver burden is essentially similar across different disorders as long as the disorder is of sufficient severity and duration to cause marked disability. [18] On the other hand, the association with demographic characteristics of patients or caregivers is less apparent. Despite this ample body of evidence on caregiver burden, Indian studies have been plagued by quite a few faults in their design. [8] The majority of the studies are on hospital attendees, with only a handful of them being community-based. The more recent studies on dementia are an exception to this trend, and for the most part have been conducted in community settings. Investigations of burden are predominantly cross-sectional, and only a small number have followed up their subjects for 3-6 months. The focus has been more on chronic illnesses; therefore, not much is known about caregiver burden in early or acute phases of psychiatric disorders. Studies are generally quantitative in nature, though it is heartening to note the recent appearance of qualitative studies. [19],[20]

From burden to caregiving

Family caregiving for mental illness needs to be distinguished from the usual caring, which is age and culturally appropriate, for example, parents caring for their young children. Normal "care" changes into caregiving once the responsibilities and tasks of one family member go beyond those ordinarily expected. The additional burden of the caregiving role to an already existing family role frequently makes the experience of caregiving a stressful one for the family member. Caregiving is often prolonged, and caregivers often find themselves in this role unwillingly. The consequences of caring for someone with severe mental illness essentially consist of the obligation to offer long-term extensive care, and emotional distress associated with providing such care. All these aspects of caregiving make it burdensome, although on rare occasions, it can be a source of joy and satisfaction. The negative consequences of caregiving are usually referred to as caregiver burden. There are several similar definitions of caregiver burden, all of which lay emphasis on the adverse impact of the patient's illness on the caregiver. [8] Research on caregiver burden, which originated in the 1950s, has proceeded through several phases, from simple enumerations of the problems faced by caregivers to consideration of the different facets and correlates of burden. [21] However, the concept of caregiver burden has been found to be problematic, particularly because of its exclusive emphasis on the negative aspects of caregiving. Thus, studies on the impact of mental illness on caregivers have gradually moved beyond caregiver burden to a consideration of the caregiving experience in its totality. [22] Family caregiving has been defined as "interactions in which one family member is helping another on a regular basis with tasks that are necessary for independent living." [22] Besides being a more neutral concept, which incorporates both positive and negative aspects of providing care, research on caregiving is more theory driven. The predominant model for examining the process of caregiving has been based on the stress-appraisal-coping theory of Lazarus and Folkman and its variants such as the sociocultural stress-coping theory. [23] This model proposes that patients' problems, behaviors, disabilities, and the burden caused by them are the principal stressors that caregivers face. The central elements of caregiving are appraisals of these stressors by caregivers, which in turn determine how they cope with them. Several factors mediate the overall process including illness variables, caregivers' sociodemographic and caregiving profiles, their personality attributes, familial sociocultural factors, and social support among caregivers. Interactions among stressors, appraisals, coping, and the different mediators produce the eventual outcome in terms of distress or well-being among caregivers.

It is in this new paradigmatic approach to caregiving that Indian research seems to have been left behind. Admittedly, there are quite a few of Indian studies on different aspects of the caregiving experience such as appraisal, coping, positive aspects of caregiving, needs of caregivers, stigma, expressed emotions, caregivers' beliefs or attributions, and subsequent help-seeking by them. [1],[8],[24],[25],[26],[27],[28],[29] However, such studies have seldom stitched together these disparate elements and examined the entire process of caregiving using a theoretical framework to guide their examination. Only a few studies have been based on the stress-coping approach, either implicitly or explicitly. [11],[24],[30],[31],[32],[33],[34],[35] This is unfortunate because even the handful of Indian studies using this approach have come up with valuable insights into the process of caregiving in the Indian context. For example, a recent effort found that though interactions between illness-related stressors and caregiver attributes appeared to determine caregiver distress, subjective perceptions and other attributes of caregivers had a greater impact on distress. [34] Besides, the stress-coping model enables a more nuanced approach to other mediators of the caregiving process. Prominent among these are the influences of culture and gender. It is evident that cultural factors such as familism, filial piety, and family cohesion (often called the Asian cultural values) have an important bearing on caregiving. [36] This has been borne out by the few Indian studies that have examined the impact of these familial cultural variables on the process of caregiving. [32],[33],[34],[35] Similarly, though family caregiving is a predominantly feminine activity in India, only a small number of studies among the elderly or those with schizophrenia and mood disorders have carried out in-depth explorations of the influence of gender and the interactions between gender and culture on the process of caregiving. [7],[32],[33],[35]

Indian research of family-based interventions

Starting with the legendary Dr. Vidyasagar, Indian psychiatry, has had a long tradition of both involving families in care of those with mental illnesses, as well as providing support to these families. [1],[8] During the 1960s and 1970s, several excellent descriptions of families participating in the treatment and rehabilitation of those with mental illnesses were reported. However, these pioneering attempts at engaging families in care were limited to large hospitals, which had the necessary resources to carry out these interventions. For family-based interventions to be widely available, research had to be carried out in other settings, particularly those with a dearth of resources. It is here that the latter-day Indian researchers appeared to have failed the pioneers. Subsequent research on family-based interventions for mental illnesses has been scarce and has mostly consisted of descriptive, quasi-experimental, and uncontrolled studies. [8] Only four randomized controlled trials are discernible. Three of these have been conducted among caregivers of patients with schizophrenia including one of home care treatment, the other on the effect of a brief educational intervention on explanatory models of caregivers, and the third on a structured psychoeducational intervention for family caregivers. [37],[38],[39] A more recent trial has examined the effectiveness of a home care program for caregivers of those with dementia. [40] Unfortunately, in this age of evidence-based medicine, this cannot be considered sufficient proof for the efficacy of family-based treatments in India. Some of the lack of enthusiasm may arise from the skepticism about the need for structured interventions for Indian families. Critics have argued that day-to-day practice already involves family members; or that the concept of formal family interventions is a foreign one, and that structured interventions are expensive, time-consuming, and resource-intensive, which makes them unsuitable for countries such as India. [1],[8],[39] Nevertheless, there is no doubting the high prevalence of burden and distress among Indian family caregivers. Moreover, the evidence from both developed countries and even developing ones such as China conclusively demonstrates the usefulness of family-based interventions in lessening negative caregiving outcomes. Therefore, offering support to families by the way of culturally adapted structured family interventions seems to be a necessity rather than a luxury. Then again, not only is there insufficient evidence for the efficacy and feasibility of family-based interventions in India, but there is also some ambiguity about the shape these interventions should take. Two major models developed and empirically tested in the West are the behavioral family management model and the family psychoeducational model. [41] A subset of the family education model is the consultation model, in which individual families meet periodically with a professional involved in the patient's treatment to receive information, advice, or support according to their needs. It has been suggested that this could be a more appropriate model for Indian families. Another suggestion to adopt a needs-based approach with varying levels of interventions from simple to complex is also a particularly apt one. [42] Regardless of the model adopted, it is amply clear that relatively simple and inexpensive forms of these interventions, which place emphasis on ongoing contact and medication adherence while offering emotional and practical support, and which rely on nonspecialist professionals for delivery are more likely to succeed in the Indian context. [39],[41],[42] Finally, widespread implementation and dissemination of such interventions is likely to prove to be a greater challenge than for developed nations, because of the scare resources and a multiplicity of other social, economic, and cultural hurdles in India. It goes without saying that much more research is required in this area before mental health professionals in this country are able to find effective ways to help families cope with the adverse consequences of providing care.


  Family Caregiving for Mental Illness in India: The Impact of Research on Clinical Practice Top


Despite its deficiencies, Indian research on family caregiving for mental illness has consistently documented the extent and nature of burden and distress borne by families while providing care. Therefore, it has become imperative for Indian mental health professionals to use this evidence in their routine clinical practice for the benefit of their suffering patients and families. However, the psychiatric set-up in the country appears to have a paradoxical approach toward helping families. While involvement of families is welcomed by mental health practitioners, precious little is done to alleviate their distress in day-to-day practice. [1] Little heed is often paid to the need to support and strengthen the family as a part of good clinical practice, though this continues to be the subject of several articles, book-chapters, guidelines, editorials, and orations. [1],[3],[4],[5],[6],[8],[43],[44],[45] Consequently, not much seems to be known about how the findings from research translate into routine practice, except that their transfer to clinical settings is probably insufficient, sporadic, and slow. However, it can be hoped that the expanding research interest will eventually motivate clinicians in using the evidence while helping family caregivers of those with mental illnesses. Some impetus may also come from the rapidly emerging self-help groups and family associations in several parts of India, which are doing their bit to raise awareness about the problem, in addition to helping and educating families and serving as their advocates.

In conclusion, this brief appraisal of family caregiving for mental illnesses in India suggests that it consists of much that is good, for example, the extensive research on different facets of caregiving in a wide range of psychiatric disorders; some that is bad, for example, the lack of high-quality intervention research, and some that is perhaps ugly, for example, the failure of the system to respond to the families' needs. Hopefully, this examination of literature also succeeds in highlighting the progress that has been made in this key area of mental health care in India, however sluggish it might be. To paraphrase a quote by Victor Hugo, it seems that helping families in providing care is an idea whose time has not yet come in India. However, if the slow yet steady progress of these Indian efforts continues, its time will surely come, perhaps sooner than later.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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