Ajit AvasthiProfessor, Department of Psychiatry, PGIMER, Chandigarh

PRESIDENT, INDIAN PSYCHIATRIC SOCIETY

Preserve and strengthen family to

promote mental health

What is family ? Family – Latin word ‘familia’ Oxford dictionary

“The group consisting of parents and their children, whether living together or not; in wider sense, all those who are nearly connected by blood or affinity”

In Psychiatry “The family denotes a group of individuals who live

together during important phases of their life time and are bound to each other by biological and /or social, psychological relationship” (Sethi, 1989)

Features of family across globe

Universal Permanent Nucleus of all social relationships Has an emotional basis Has a formative influence over its

members Guides its members as to what is their

social responsibility (Bhushan & Sachdev, 2006)

Traditional Indian Family Collectivist society Patriarchal ideology Specified gender roles Hierarchy and authority: clear

Why does family care ? Feelings of closeness and interconnected-

ness, gender-role conditioning, life situation (Guberman et al, 1992)

Optimism for recovery Understanding of patient’s capacities

(Evans et al, 1961)

Caregiving gains (Chen & Greenberg, 2004)

Integration of family in mental health delivery system

Prior to arrival of the Britishers: lack of mental health services

Mentally ill subjects were looked after by the families at their home or in religious institutions or roamed free

The Britishers established “Mental Asylums”

Integration of family in mental health delivery system1745: the first mental asylum

Till 1946: the approach of the Government was to establish custodial centers

1933: the first GHPU

1957: Dr. Vidya Sagar, involved the family members of the mentally ill in the management

1974: WHO brought out a technical report which paved the way for community-mental health program

Integration of family in mental health delivery

Late 70s-onwards: Many GHPUs came up

1982: National Mental Health Program (DGHS, 1982) Approach

• Diffusion of mental health skills to the periphery• Linkage to community development• Train parents in the management of mentally retarded children

Late 70s: Feasibility studies were conducted in Sakalwara (Chandrasekhar et al, 1981) and Raipur Rani (Wig et al, 1981)

Integration of family in mental health delivery

In India, “community care” often translates into patients remaining outside hospitals, but with their families

Cross-cultural studies: less than 50% of patients in the Western world lived with their families, while the comparable figure in India was 98.3% (Dani et al, 1996; Sharma et al, 1998)

West: trained manpower, social services, community services, limited family role

India: limited resources, family key resource

Traditional Indian Family: advantages for mental health

Source of economic and social support (Sinha, 1984, Sethi & Chaturvedi, 1985)

Diffusion of burden (Leff et al, 1990)

Compensates for dysfunctional member (Padmavati

et al, 1998)

Social integration Nuclear family structure is more likely to be

associated with psychiatric disorders (Bharat, 1991)

Traditional Indian Family: advantages for mental health

IPSS, DOSMeD, ISoS – outcome of schizophrenia better in India and other developing countries (Kulhara & Chakrabarti, 2001)

Early therapeutic interventions, including family interventions → stabilization of prevalence of positive and negative symptoms in the first 2 years of the illness

(Thara et al, 1994; Eaton et al, 1995)

Impact on family: the silent sufferers

Burden Distress Psychiatric morbidity Economic hardship Discrimination and stigmatization Change in role Meet the needs of the patients

Impact on family: burden of care

Highest in schizophrenia (Barrowclough, 2005)

Comparable to other psychiatric disorders e.g. BPAD, OCD, substance dependence etc

(Kiran, 2004; Nehra et al, 2006; Chadda et al, 2007; Kalra et al, 2009)

Similar to or more than chronic physical disorders (Gautam et al, 1984; Sreeja et al, 2009)

Has more effect on family than the financial burden (Chakrabarti et al, 1999; 1995)

Impact on family: cost of illness

Substantial proportion of the cost of treatment is borne by family members (Deshpande, 2005; Sharma, 2000; Grover et al,

2005)

Cost of treatment of schizophrenia is comparable to costs of other physical illnesses (Grover et al, 2005)

Caregivers spend a considerable amount of time looking after the patient or taking over his/her duties (Deshpande, 2005)

Impact on family: needs of patients and families

Most of the needs in schizophrenia & bipolar patients are met by their family members (Neogi et al, 2009; Kulhara et al,

2009)

Meaningful employment, or productive activity for the mentally ill are commonly perceived needs (Shankar & Rao, 2005)

Family carers expressed concerns about the well-being of their patient after their lifetime

(Sovani, 1993; Shrivastava et al, 2001; Kulhara et al, 2001)

Impact on family: stigma Family stigma: stereotypes of blame,

shame, and contamination Stigma leads to restricted access to all

kinds of facilities including health-care services and discrimination

(Tsao et al, 2008; Struening et al, 2001; Kadri et al, 2004)

Stigma affects the chances of marriage of the patient, or another member of the family

How does family react? Coping Expressed emotions Seeking social support Psychiatric morbidity

Coping High levels of burden, dysfunction, expressed

emotion and low levels of available support – associated with a number of maladaptive, emotion-focused coping (Budd et al, 1998; Magliano et al, 1998; Scafuza et al, 1999; Magliano et al, 2000)

High level of psychiatric morbidity among family carers (Sovani, 1993)

Use of problem-focused coping, and seeking social support - related to positive caregiving experience (Marimathu et al, 2000; Aggarwal et al, 2009)

Contributory role of family in mental disorder

Contributory role of family in mental disorder

Psychoneurotic and depressed patients - unitary and small-sized families (Sethi, 1983)

Hysteria is observed more commonly in females from joint families (Sethi, 1983)

High expressed emotion - “significant and robust” predictor of relapse in schizophrenia, depressive disorders, acute mania, and alcoholism (Butzlaff & Hooley, 1998; Heru, 2006)

Contributory role of family Contributory role of family in mental disorder in mental disorder

Role of family in the management

Treatment Treatment Compliance Compliance

RehabilitationRehabilitation

Role of family in treatment

Biopsychosocial model (Engel, 1978)

Concept of “the social brain” - unifying model for how the environment shapes brain development (Gardner, 2005)

Family environment - plays an immense role in the management of psychiatric patients

Role of family in treatment (contd..)

Family-based interventions - the most significant contribution of family research to psychiatric practice

Family intervention reduces rates of relapse in schizophrenia, bipolar disorder, major depression, borderline personality disorder, and alcoholism

(Gunderson et al, 1997; Miller et al, 2005; McFarlane et al, 1995; Miklowitz et al, 2004; O’Farrell et al, 2004)

Role of family in treatment (contd..)

Family intervention studies in India (Chacko et al, 1967; Narayanan et al, 1972; 1988; Verghese

et al, 1988; Shankar & Menon, 1993; Pai & Kapur, 1982; 1983; Shihabuddeen & Gopinath, 2005; Thara et al, 2005; Kumar & Thomas, 2007; Kulhara et al, 2008)

Schizophrenia, bipolar disorder, alcoholism, mental retardation - family intervention has been found to be effective

Limitations – small sample size, few randomised controlled trial; most are open label studies

Role of family in treatment compliance

Nonadherence - a major obstacle in the treatment of psychiatric patients

(Weiden et al, 1995; Scott & Pope, 2002; Demyttenaere et al, 2000)

Adherence may be maximized when family members or patients’ significant others are involved (Van Gent & Zwart, 1991)

Adherence to antipsychotic medication - strong positive correlation with total supervision of medication and percentage visits with attendants (Warikoo et al, 2008)

Role of family in rehabilitation

In developing countries, caregivers play a major role in the resocialisation, vocational and social skills training (Leggatt, 2002)

Indian patients were more socially integrated than patients in UK (Sharma et al, 1998)

Community based rehabilitation was found to be better in reducing disability, improving outcome and treatment adherence compared to outpatient care (Chatterjee et al, 2003)

Are we going to deal with the same

traditional family?

No !!

Changes in traditional Indian family

Changes in traditional Indian family

Over the last few decades, the family structure has undergone change

Nuclearization of families - urban >rural (Census, 2001)

Changes in traditional Indian family

Sociological and demographic changes have impact on urban families due to• Shift from joint/extended to nuclear family

• Influx of the traditional female caregivers into the workforce

• Migratory movements among the younger generation

• Older caregivers are left without a second generation of support

Implication of changes in family structure

Urbanization: Adjustment disorders, depression, sociopathy, substance abuse, alcoholism, crime, delinquency, vandalism

(Trivedi et al, 2008)

In India the mental health care needs have increased but an important resource in the form of family is depleting

Community mental health programs should take family members into confidence

(Chandrashekar & Parthasharthy, 2005)

What needs to be done? Time has come to recognize the contribution

of family members

Mental health policy: flexible Vs dogmatic

Reorganization of services: focus on both patient and family than patient centric only

Access to better treatment including medications, psychosocial interventions and rehabilitation services

What needs to be done?

Caregivers need to be supported through active programmes of support and guidance

Anti-stigma campaigns and Support groups

Increasing the awareness of caregivers about whatever little government benefits available- tax rebate, disability benefits

Legislations should be there to provide incentives for families to take care of their patients with long-term disabilities

What needs to be done? Funding should be arranged to carry out

research in the field of psychosocial/ family intervention

Family interventions should focus on expanding training to patients and key relatives

Comprehensive community care programmes with family involvement

Take home message Family plays a huge role in the management

Caregiver suffering has been poorly addressed

With institution of family crumbling the crisis is likely to increase, snowballing effect because of lack of governmental initiative

Hence,

“Preserve family and promote mental health”