|Ahead of print
Living with cancer: Urgent need for emotional health support
Annie Alexander1, R Srinivasa Murthy2
1 Division of Molecular Medicine, St John's Research Institute, 100 Feet Road, John Nagar, Koramangala; Department of Psychology, CHRIST (Deemed to be University) Hosur Road, Bangalore, India
2 Department of Psychiatry, Formerly Professor of Psychiatry; National Institute of Mental Health and Neurosciences, Hosur Road, Bangalore, Karnataka, India
|Date of Submission||05-Feb-2019|
|Date of Decision||22-May-2019|
|Date of Acceptance||02-Jun-2019|
|Date of Web Publication||22-Jun-2020|
Division of Molecular Medicine, St John's Research Institute, 100 Feet Road, John Nagar, Koramangala; Department of Psychology, CHRIST (Deemed to be University) Hosur Road, Bangalore
Source of Support: None, Conflict of Interest: None
The emotional health of persons diagnosed with cancer is compromised. Emotional health care should be part of all stages of cancer care. However, this is not so, not only in India but also in Western countries. International Psycho-Oncology Society (IPOS) noted on World Cancer Day, 2019 “IPOS is working hard to integrate psychosocial care into mainstream cancer care worldwide.” Similar is the resolution of the World Health Organisation (2017), “to promote and facilitate psychosocial counseling and aftercare for cancer patients and their families, taking into account the increasingly chronic nature of cancer.” In a recent study, there is evidence of the importance of pre-existing mental illness in persons diagnosed with cancer, as a predictor of higher mortality. There are also reports of the significant unmet emotional needs among survivors of cancer both in developed and developing countries. A study from a developing country stated “most parents of children with cancer reported a need for more information and reported signs of anxiety and depression”. During the last two decades, great efforts have been made in cancer research toward treatment with positive results. With this, cancer treatment has come to be intensive, with increased psychosocial needs of survivors. The diagnosis and treatment affect the emotional health of the patient and the family.
| » Effectiveness of Psychosocial Intervention|| |
An important development of the last two decades is the demonstration of the effectiveness of addressing the psychosocial and spiritual needs of persons living with a diagnosis of cancer in reducing distress, improving quality of life, and better survival. One of the first studies, three decades back, by Spiegel et al. investigated the effect of psychosocial intervention on the duration of survival with metastatic breast cancer. The 1-year intervention consisted of weekly supportive group therapy with self-hypnosis for pain. Both the treatment and control groups had routine oncological care. At follow-up, a significant difference was found, where survival was 37 months for treatment groups as compared to 19 months for the control group.
Several reviews support the effectiveness of the psychosocial intervention. Satin et al. on the basis of 25 studies, concluded that depression symptom was associated with 25% excess mortality. Xia et al. reviewed 15 randomized control studies and concluded that adequate psychosocial and behavioral intervention prolonged survival for some cancer patients in 2 years after intervention. A recent study in 2014, “Symptom Management Research Trials” (SMaRT) in Oncology concluded “depression care for people with cancer, is highly effective in improving depression and quality of life.”
| » Emotional Health Needs of Indian Patients|| |
Numerous studies from India have reported that cancer increases the need for emotional support, and this is reflected in the increased rates of psychiatric distress and disorders (Alexander A, Kuruveetissery S, Murthy RS. Beyond Numbers – Recent understanding of emotional needs of persons diagnosed with Cancer - 2007-2018. 2019. Unpublished manuscript). However, there are areas of concern about cultural suitability of interventions and their application as part of routine care.
In cancer patients, the incidence of different forms of mental disorders is two to four times higher than in the normal population. The cancer patient's mental health is compromised as compared to the normal population in India. A review of the studies reported from India, over the last decade, has addressed validation and translation of assessment tools in local languages, on quality of life, distress, and fatigue. Studies of psychological intervention are still in the early stages. Majority of the psychosocial interventions have focused on yoga with supportive counseling. Few others have addressed task orientation, exercise, supportive psychotherapy- psychoeducation, relaxation therapy, cognitive behavior therapy, and acceptance and commitment therapy. It is appropriate to say, at present, research in this area lacks a rigorous approach, as most of these studies have a small sample size, and have not assessed the results with the clinical outcomes such as treatment adherence and survival.
Another matter of concern is the high rates of suicides in persons diagnosed with cancer. Mohandoss and Thavarajah reported from 2001 to 2014, over 14 years 0.61% of cancer-related suicides were accounted in India. The higher rates of suicide among those living with cancer in India is in line with recent reports from the Western countries. The increased risk in the first 6 months after the diagnosis of cancer has been reported from United Kingdom. The greater the stage and grade of cancer, the higher the risk. In Kerala, in a survey from July 2016 to March 2018, terminally ill cancer patients committing suicide was far higher than in the general population., According to Sinha et al., “the medical, social, and psychological factors (e.g., depression) may contribute to suicidal ideation, desire for hastened death, or requests for physician-assisted suicide by terminally ill patients.”
| » Cultural Dimension for Psychosocial Care in Cancer|| |
There is wide recognition about the importance of psychosocial, cultural, and religious dimensions to cancer care. The understanding of pain, suffering, end-of-life situation and death is understood differently in different communities. Indian culture has a conservative approach toward health in general, with a fatalistic attitude, stigma, myths, and beliefs in traditional healing. Family plays a vital role in the treatment of the patient, including decision making and providing financial and emotional support. Spiritual/religious activity such as faith and prayer is a primary coping strategy. The concept of “karma” helps in rationalizing this challenging situation. Currently, there is a lack of routine screening for distress, emotional health education, and in severe cases appropriate referral for psychosocial cancer care to specialist staff.
| » Future Needs|| |
There is a need for increased awareness of the psychological distress as an essential part of living with cancer, among all the stakeholders involved in cancer care. Such awareness and provision of emotional support can minimize the distress, increase the quality of life, and can contribute to better survival.
Toward this goal, in the Indian setting, there is a need for initiatives at several levels. The specific steps that are needed to be initiated in India are as follows:
- To understand the emotional responses of individuals in different social, cultural, economic groups and during the different phases of care from diagnosis to end-of-life care, to develop suitable interventions to meet the specific needs
- Development and standardization of culturally sensitive assessment tools suitable (language, culture, etc) for use in the different parts of India. In addition to distress screening and quality of life, there is a need to understand the study of social support, coping skills, resilience, and post-traumatic growth
- Health literacy should be a priority against the background of limited awareness about the disease, treatment, and post-treatment follow-up. There is a need to provide health information not only to the person diagnosed with cancer and also to all of the family members. This information should be developed in regional languages and in audio-visual formats
- Studies should be carried out to develop targeted emotional health support programs to decrease distress, increase resilience, and to find the meaning of life while living with cancer and to systematically evaluate their effectiveness
- Currently, most centers of oncology do not have the psychosocial service/emotional support available to all the persons diagnosed with cancer. The increased risk for emotional health problem associated with cancer can be minimized through holistic care – by making psychological, family, social, and spiritual/religious care available to all patients throughout the care period
- In Western countries, support groups form an important part of cancer care. This is not so in India. There is a need to explore and innovate this aspect of support groups in the Indian context. There is a need to break the stigma and fear of sharing of feeling with others, by developing support groups that are appropriate to Indian society
- Information technology can be a vital resource in providing information and networking of individuals with similar experiences for real emotional health support. There is a need to utilize information technology from screening for emotional distress to promote self-care skills toward better emotional health. Development of audio-visual materials and wider dissemination needs to be undertaken to reach the illiterate patients. Internet-based platforms (e.g., My emotional health, my choice Blog post: http://myemotionalhealthin.com); WhatsApp and Facebook groups; mentoring, self-help groups, etc., are an urgent need. It is significant that few “pay for service” programs to address this need have come up in the cities of Bangalore (CARER Program - firstname.lastname@example.org) and Mumbai (Cancer Awakens - https:// cancerawakens.com).
In conclusion, the diagnosis of cancer, the different treatments of cancer, the survivorship, and the end-of-life situation are associated with emotional distress in those diagnosed with cancer and their caregivers. There are cultural factors influencing both the prevalence and the interventions acceptable to the population. There is strong evidence to demonstrate the feasibility and effectiveness of psychosocial interventions. The lacunae in these services in India can be addressed by innovative measures, especially those involving the utilization of the information technology, mobile phones, etc. By making psycho-social-spiritual care an essential component of the cancer care, it will be possible to decrease distress, improve quality of life, and increase survival period.
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