Psycho-oncology in India: Emerging trends from Kerala
It is estimated that around 2.5 million people suffer from cancer at any given time in India. Almost 80% of patients reach hospitals in advanced stages of the disease. The majority needs palliative care, whereas only a minority of the needy receives this input. The challenge in the developing world is to evolve a culturally and socio-economically appropriate and acceptable system of care, while addressing psychosocial issues along with long-term care needs, that is accessible to the majority of those who need it. The evolution of a specific service for psychosocial care for persons and families started in the 1970s, initial work focusing mainly on research. Contributions from persons in varied topics have been outlined. Only a few organized clinical services function as part of large tertiary hospitals, oncology centers or palliative care units. The emerging trend in Northern Kerala is based on an integrated service linking training, clinical services and research activities which are linked at several levels, involving volunteers in the community. Future hopes lie in developing core groups; establishing specific clinical services liaising with cancer care teams, large scale research projects and discussion with policy makers to develop guidelines at national level.
Keywords: Psycho-oncology, India, Kerala, communication skills training, volunteers.
It is estimated that around 2.5 million people suffer from cancer at any given time in India. 800,000 persons were given the diagnosis in 2000 and 550,000 died in the same year due to cancer. Almost 80% of patients reach hospitals in advanced stages of the disease. The majority needs palliative care, whereas only a minority of the needy receives this input. The Government of India has included palliative care as part of the National Cancer Control Program. It was suggested that palliative care be linked with cancer care in the final stages of the disease as part of supportive measures.
Palliative care centers are growing in number and size, more in southern parts of the country than other regions. The centers usually offer a service through which the patient and family have access to the facilities available for the control of physical symptoms and/or for emotional support. The lack of time and facilities could mean that the care then becomes "superficial", not approaching the "depth work" needed for psychosocial and spiritual support., The multifaceted nature of palliative care entails that it is best delivered by a multidisciplinary team working in partnership with patients and their families.
India, with a population of over a billion people, is a country of varying social, cultural and geographic characteristics. There are real problems in meeting the health care needs of such a large population, particularly, the poor in rural areas. However, huge advances have been made in various aspects of health care including the provision of cancer care. Given this context, it is no surprise that psycho-oncology is a small specialty and not yet accessible to many. The challenge in the developing world is to evolve a culturally and socio-economically appropriate, acceptable system, addressing psychosocial issues along with long-term care needs, that is accessible to most of those who need it.
It is interesting that research papers in psycho-oncology from India began to appear as early as the 1970's and this trend has continued since. Many of these have emerged from well-known academic institutions often as dissertations for higher degrees. These studies have happened across a range of settings and in various patient groups. Early studies began on psychological aspects, for example; personality variables in cancer patients, including gender specific variables and psychological issues amongst others. The interest slowly extended to focus on psychiatric morbidity in cancer patients. Among various articles, a few examined not just this, but also its relationship with awareness of diagnosis and expectations., One of these studies showed that adjustment disorders were the most common psychiatric diagnoses and major depression was diagnosed in 13% of this population. These findings have been replicated in many studies. Interestingly one third of the patients were estimated to be unaware of the diagnosis of cancer and 82% perceived the treatment given as curative. The issue of informational needs of patients and decision-making is an area of interest into which research is being carried out at the Christian Medical College, Vellore.
A group at the National Institute of Mental Health and Neurosciences in Bangalore is credited with initiating pioneering projects in several other dimensions of cancer experience. Symptoms like chronic pain in cancer, its psychiatric manifestations and coping mechanisms have been studied. Diagnostic issues such as use of screening tools, questionnaires and the modification of criteria to diagnose depression have also been focused upon., Collaboration with international experts has also been a feature, such as with Dr. Peter Maguire and his group in Manchester. This has included teaching and research programs. Major projects on somatic symptoms in cancer, their nature and relation to concomitant psychopathology came under this joint effort., Other research included quality of life, concerns of cancer patients, use of antidepressants, role of psychosocial interventions and staff stress.
Psychosocial aspects related to cancer in children have also been recognized as needing attention. Knowledge and awareness of illness among parents of children with malignancies, concerns, burden of care and factors influencing distress have been studied., Other than research, training programs and seminars have also been conducted. Workshops in communication skills have been held at NIMHANS with input from Dr. Maguire. An informal group of professionals, volunteers and others involved in this field started exchanging ideas across the nation. This led to a national psycho-oncology conference, which took place in 2001.
Like in other parts of the world, academic and clinical psycho-oncology has not always grown in parallel. Only a few organised clinical services exist and these are often in big cities such as Bangalore, Mumbai and Vellore, as part of large tertiary hospitals or oncology centers. In other areas, individual clinicians work in isolation trying to link up with oncology or palliative care services. Counsellors, social workers, an increasing number of psychologists and a few psychiatrists seem to provide most of the services.
In recent years, interesting developments have been taking place in psycho-oncology in Kerala. These have happened against the background of the growth of palliative care as a community movement in large parts of Kerala. This has attracted international attention, as a viable model for large parts of the world where the hospice-based model may not be practical or economically feasible.
Kerala with a population of around 33 million has seen the pioneering of a community owned healthcare model called the Neighbourhood Network in Palliative Care (NNPC), in certain districts. In 1993, a non-governmental organisation was set up in the North Kerala town of Kozhikode (Calicut), which rapidly grew from small beginnings. From the outset, it relied upon trained volunteers to provide good quality care and recognised the importance of community participation. By 1996, the first of several link centers had been established and when these proved successful, it was recognised that the success was due to the model of active community participation. This in turn led to the launching of the NNPC program in 2001 and now there are over 60 units in the network predominantly in some Northern districts of Kerala. In these units, trained volunteers take several key roles such as performing nursing tasks, counselling, organising social care and administrative tasks including fund raising. Nurses and doctors liaise with the volunteers and provide higher-level care and supervision. Patients are visited at home.
Since the beginning, importance has been given to psychosocial aspects and this became more formal as the palliative care specialty began to establish itself. In Calicut, communication skills training, initially by colleagues from the United Kingdom, began in the 1990's. This involved medical staff as well as other professionals and volunteers. In later years, training material was translated into Malayalam (the local language) and volunteers in the community also received training.
The aim of reaching out to large numbers led to the idea that communication skills training needs to be a non-specialist area. The resulting important innovation has been to train volunteers as trainers in communication skills. Since training had already been strong in basic issues in the area of communication, this made the task easy. The need to share information about the illness, discussions about options, the need to listen actively and the 'dos and don'ts' of communication, were emphasized in training modules.
The next step was to train volunteers already working in the field of palliative care in the area of advanced communication skills and this was done in 2003. The initial module was developed as 8 sessions over 8 months with 8 senior volunteers and consisted of discussions, sharing experiences, interactive sessions, role-plays and short lectures. The areas dealt with included reactions to illness and how to manage such reactions. Topics for discussions included common psychological issues such as denial and displacement, issues around truth-telling in the Indian context, on the role of culture and dealing with families who play such a vital role in care giving. Information on identification of depression, anxiety and other common psychological presentations were given. The volunteers were also made aware of the drugs used as part of the treatment at a basic level. The whole process resulted in the creation of modules in Malayalam. Two modules for training volunteers in basic and advanced issues in communication skills have been developed and are in use now.
As an offshoot, medical students also began to receive communication skills training, which, as it is not part of the regular curriculum, had to be delivered by the palliative care team. This takes place in few medical colleges across Kerala. In one of these, the training has been evaluated using a questionnaire developed in Liverpool and compared with data from students at a similar stage of training in Liverpool. A whole batch of fourth year medical undergraduates was provided training in communication skills, with interactive sessions and role-play of 9 hours per batch. They were assessed before and after the workshop and analysis of this has revealed significant improvement in skills and attitudes (unpublished data).
An important development was the presence of a qualified psychiatrist as a member of the palliative care team, which allowed psychosocial oncology models to be developed within the team. Psychological morbidity could be dealt with within the service rather than being referred outside, greatly enhancing acceptance among the patients. More importantly, this helped the team to retain its psychosocial focus and led to the enhancement of skills at the local level.
The development of the service was aimed initially at a clinical level and gradually integrated with training and research programs. In 2003, a weekly outpatient service was started, which also provided an opportunity for team members including doctors, nurses, auxiliary nurses and community volunteers to be trained. This was paired with interactive sessions on basic communication skills and later advanced communication skills. As the model gained acceptance, there have been opportunities to employ this at a regional and national level.
Screening for psychological morbidity assumes great importance in the context of the developing country. Scarce psychosocial resources can be utilized better if screening is effective. A small study done in Calicut compared two brief screening instruments with the psychiatrist's clinical interview. Volunteers trained in the use of questionnaires, administered the Brief Symptom Inventory 18,, translated into Malayalam and the Distress thermometer to these people. This was followed by a detailed evaluation by a qualified psychiatrist who was blind to the scores on the screening instruments. The encouraging results led to a larger study that is currently underway. Other studies underway focus on issues such as carer's distress, delirium and decision making at end of life.
The various courses in palliative care, which have evolved during the last decade, have all included psycho-oncology and psychosocial issues in chronic diseases as a module. The Basic Certificate Course in Palliative Medicine in various centers, Post Graduate Fellowship Program in Palliative Medicine conducted by Institute of Palliative Medicine, Calicut in association with Christian Medical Association of India (CMAI) and the two year residential diploma program in Amrita Institute of Medical Sciences, Kochi, Kerala - all have structured psycho oncology modules.
Psychosocial issues have been given importance in various meetings, at national and international levels. An International Workshop on Community Participation, which took place in November 2004 in Manjeri, Kerala, had psychosocial issues as one of the themes. Psychosocial issues also figured in the discussions in the annual international conferences conducted by the Indian Association of Palliative Care, in 2005 and in 2006. In fact, this was the theme of the conference this year.
Local seminars in psychosocial oncology are being encouraged. The first 'Seminars in Psychosocial Oncology' was held in Calicut at the Institute of Palliative Medicine, earlier this year. The two-day event drew together over eighty clinicians, researchers and an international faculty. Apart from examining issues related to screening for psychological morbidity, there were workshops on communication skills training, problem solving therapy and presentations of free papers looking at a variety of aspects of the practice of psycho-oncology. Following the seminar, it was decided to develop a training program in psychosocial interventions for palliative care, using the problem solving therapy model. At the time of writing, 3 of 10 planned sessions in training a select group had taken place, arousing a lot of interest.
Research projects, such as the one on screening for distress in a large community sample, are an important part of the development of the field of psycho-oncology. Also the emphasis should be to develop clinical services in parallel so that there is a trained person in each team delivering care. Effective awareness and training programs at a national level, liaising with cancer care teams and discussions with policy makers to highlight the importance of this area are part of the agenda.
A core group seems to be emerging to take the responsibility for establishing and continuing an effective psycho-oncology service independently, linking with palliative care. Though this exists informally now, the hope is to form a national organization, which would guide, help and sustain a psycho-oncology movement.