A family burden

10 World Health • 47th Year, No. 2, Morch-April l994 A family burden R. Thara 11,11 was a brilliant technology student hailing from a conservative and deeply religious family. In his first year as a student he began experiencing mental conflicts ari sing out of the disparity between his own value systems and those he was then exposed to on the college campus. A year later - like any full-blown picture of psychotic illness- he heard voices talking to him and controlling all his thoughts and emotions, lost interest in everything, isolated himself, and gave a poor academic performance. Relatives of mental patients often feel helpless .· prayer may be their only recourse and hope. After four or five years of treatment he improved and obtained a diploma in technology, but refused to continue taking medicines. His elderly father, a pious temple priest, his se lf-effacing mother and hi s brothers and sisters were all shattered by this collapse of their dreams and hopes. His frequent outbursts of aggression, total lack of motivation to work and eccentric behaviour drained them of their energy. Even today, after ten years , they live in agony, with just a glimmer of hope that one day he will "return" to them and take up his responsibilities at least to the extent of fending for himself. Their hope rests in divine intervention . Thi s is a typical story of a family with a member suffering from chronic mental illness (CMI). Equally distributed all over the world , CMI covers a group of severe, psychotic illnesses, the more important ones being schizophrenia and manic depress ive psychosis. In most developing countries, the entire spectrum of caregiving - the perception and interpretation of symptoms, decisions on the mode of treatment and its continuation- rests with the family . This consequently imposes a severe burden on them, the elements of which are similar across varied cultural settings. Objectively, they suffer financial stress , disruption of family routine, impairment of the health of others and even the breaking up of the famil y itself. The long duration of treatment, the cost of commuting to the treatment facility, the earnings lost in the process and the large size of the family contribute to the strain on the exchequer. Besides, in many countries CMI sufferers are not eligible for any welfare or disability benefits. The subjective distress experienced by such families covers a wide range of emotions such as sorrow, disappointment, guilt, anger, a sense of loss and lack of control over their own lives. Witness ing the decline in the loved ones, the change in their personalities, their insensitivity to and lack of appreciation of the carers' efforts all cause a lot of emotional pain. The stigma attached to mental illness does not make it easier for the families to cope. In the 1970s, the profess ionals induced a lot of guilt in families by blaming them as · causative factors, but the families have now been largely absolved of this . All that can be said now is that any emotional overreaction by family members could lead to a relapse of the condition. No long-term care A concern often expressed by carers is about the continuity of care: what happens to the patient when I am no longer there? An alternative system of long-term care does not exist in India, since there is a gross disparity between those in need of it and those competent to provide it. Elderly parents particularly often make a desperate but usually futile search for service systems that provide this facility . Joint or extended families can act as effective buffers in several ways. Their own explanatory model of the illness - black magic, fate, World Health • 47th Year, No.2, March-Aprill994 hereditary weaknesses and so on - help to build up tolerance of the ill member, who is not really held " responsible" for his ailments. This may not be the case with urban and literate families, whose expectations of the sick member are much higher, whose role definitions are clearer and whose day-to-day stress factors are more severe. It should be emphasized that families also derive a lot of support from neighbours and friends. The concept of formal support groups dealing with consumer-based issues has yet to catch on in India, although informal support groups are available, especially in rural areas and slums. Besides these common problems faced by families all over the world, there are certain culture-specific themes. In India, for instance where most marriages are still arranged after a careful scrutiny of the family standing, resources, health and so forth, the presence of a mentally ill member can be a deterrent to the prospects of the sisters and brothers getting married. This often acts as an irritant focus, affecting the emotional climate of the family. In the same context, disclosure of information about mental illness can be a tricky business. Nevertheless, marriage is still held to be a panacea of all ills, especially those afflicting the mind. This belief often takes precedence over professional viewpoints. How do families cope? The appearance of mental illness is invariably a disaster in which all the family are victims. Yet families all over the world have been coping with this for centuries and have formulated their own strategies for doing so. In the industrialized world, understanding and accepting the illness, seeking information about it, developing specific skills to manage difficult situations, developing realistic expectations about the patient, and sharing feelings and strategies with formal and informal support systems have become the prominent measures of coping. This may not be so in all cultures. In India, for example, there is heavy reliance on deep religious beliefs, prayer and faith in the divine to provide solace and keep hopes alive. The doctrine of Karma, a basic tenet of Hindu philosophy, induces a fatalistic attitude in many families which makes them resign themselves to the situation. At some stage, they may be driven only by a deep sense of duty and commitment, without emotions surfacing too often. For the same reason, some families are not keen to have access to information about the illness such as the prognosis, the outcome and so on, the knowledge of which might break down their barriers of defence. It is up to the health professionals to identify this framework of adaptation and coping, and to use it as a resource which will primarily reinforce not only rational thinking but also deeply entrenched sociocultural beliefs which have stood the test of time. • Or R. Thoro is )oint Director of the Schizophrenia Research Foundation {SCARF), C 46, l 3th Street, East Anna Nagar, Madras, India. The healing touch Phys ical touch can lower the raised heartbeat rates of patients in intensive care, even when they are comatose . Therapeutic touch is being increasing ly used to allay anxiety. Massage therapy is also being employed more and more as a stress reduction strategy, and may be particular ly effective for newborn babies , especial ly those who are premature . Massaged babies ga in weig ht as much as 50% faster than babies in an unmassaged control group and "are like ly to cry one minute, then fa ll asleep the next . . and better able to ca lm and console themselves. " The massaged babies prove to be more active, alert, responsive, aware of their surround ings and res istant to noise str ess. One physician has commented: "It is amazing how much information is commun i- cable in a touch. Every other sense has an organ you can focus on , but touch is everywhere. " II In most developing countries, the care of aging parents devolves entirely on younger members of the family.