Over the years, the focus in healthcare has shifted from merely extending lifespan to improving the quality of life. Cancer rates are on the rise in India and are projected to increase by 12.8 percent by 2025 as compared to 2020, highlighting the need for investing in both treatment and psycho-oncological services, which are key in improving the quality of life for cancer patients.
A cancer diagnosis places immense strain on patients and their caregivers, and in India, it is usually detected at the later stages. The prevalence of depression among cancer patients is estimated to be 27 percent with approximately 10 percent suffering from anxiety. Disease progression may bring about psychiatric problems as well, altogether, manifesting as the 20 percent higher suicide rates in individuals with cancer compared to those without.
The prevalence of depression among cancer patients is estimated to be 27 percent with approximately 10 percent suffering from anxiety.
Unlike in relatively individualistic Western societies, family plays a significant role in informal caregiving in India, making it a critical area for research and intervention. Among caregivers, anxiety and depression rates have been estimated to be 1.7 and 1.5 times higher than in non-caregivers. Thus, ensuring that patients and caregivers receive holistic emotional support is imperative. This article explores the factors contributing to psychological distress to better understand patient and caregiver needs while providing targeted recommendations.
Patient’s perspective
A cancer diagnosis, especially at the later stages, is perceived as a death sentence. Patients frequently experience feelings of self-blame, helplessness, and despair, compounded by ongoing physical symptoms such as pain, nausea, and weakness.
Studies across Europe estimated that around 35-40 percent of cancer patients have a diagnosable psychiatric disorder, including stress-related, neurocognitive, adjustment, and somatic symptom disorders, along with neuropsychiatric, and drug-related psychiatric symptoms. Other symptoms such as fatigue may also have psychological components.
The prolonged duration of cancer treatment, life-long monitoring and the looming fear of relapse can contribute to significant distress.
Beyond the turmoil attributed to diagnosis and treatment, cancer permeates every aspect of life, changing family dynamics, affecting interpersonal relationships and professional life, further exacerbating the need for psychological support to combat the isolation felt.
Moreover, the prolonged duration of cancer treatment, life-long monitoring and the looming fear of relapse can contribute to significant distress. Even after treatment, around 54 percent of survivors were found to be grappling with at least one psychological issue.
Caregiver’s perspective
With respect to informal caregiving, considering the role played by families, their emotional well-being is equally important and can impact patient’s health outcomes. When confronted with the prognosis, caregivers’ needs take a backseat to the patient’s. Putting on a brave face and being a source of strength and support for the patient and other family members can be exhausting.
Many families in India choose non-disclosure to the patient and other family members to shield them from the burden. It was approximated that 23–66 percent of the families preferred non-disclosure with 17–63 percent of the patients being unaware of their diagnosis in Asian cultures. The lack of support, pretence and secrecy exacerbates their requirements for emotional support.
With respect to informal caregiving, considering the role played by families, their emotional well-being is equally important and can impact patient’s health outcomes.
The formal caregivers, i.e., the healthcare workers too face similar emotional needs Given the long duration of treatment, they familiarise themselves with the patients and families. The entire ordeal, particularly when the patients do not survive, is emotionally overwhelming and adequate support should be provided to them for their well-being and that of their patients.
The impact of demographic characteristics
The kind and extent of emotional support required by patients and caregivers is further affected by several demographic characteristics such as income level, area of residence, education level, age, and gender.
The financial strain of cancer treatments is quite substantial in itself, adding to the psychological burden. An Observer Research Foundation report describes cancer as the most financially demanding ailment, with average expenditures per hospitalisation approaching INR93,305 and INR22,520 in private and public hospitals, respectively. This is compounded by a lack of adequate health insurance coverage. In a study conducted, 30 percent of the individuals had to sell assets to secure the resources required for treatment, 10 percent resorted to high-interest personal loans and 3 percent discontinued treatment due to lack of financial means.
Individuals residing in rural areas and female cancer patients are more susceptible to anxiety and depression compared to their respective counterparts. A study indicated that hair loss during treatment can cause severe body-image issues for women, particularly if they are diagnosed with breast cancer, as both are viewed as symbols of womanhood. Additionally, women with unmet cancer-related psychological needs are less likely to agree to treatment or complete it.
The stress experienced is amplified in low-income settings as patients and their families often travel long distances to cancer care facilities. A quantitative study conducted among cancer patients in India finds that the outcomes of anxiety and depression are significantly worse for those with lower levels of education and those belonging to lower-income groups, highlighting the importance of tailored, low-cost psychological support.
Individuals residing in rural areas and female cancer patients are more susceptible to anxiety and depression compared to their respective counterparts.
Another emotional burden for families from lower-income groups is facing a crushing trade-off between caregiving and professional commitments to ensure financial inflow to sustain treatment for the patient. Caregiving from families is particularly important for these patients as they find hiring caregiving services unaffordable. Furthermore, in India, it is perceived that the role of the caregiver for cancer patients should be played by the women in the family, placing a disproportionately heavy burden on them.
Psycho-Oncological Support in India
Given the complexities involved in cancer treatment and the subsequent emotional strain, a multifaceted approach is needed to ensure holistic support for patients and caregivers.
The National Comprehensive Cancer Network guidelines provide recommendations and tools for screening and distress management of patients and caregivers. However, a 2021 study found that the total referrals to psycho-oncological services in an Indian hospital remained as low as 8.6% with screenings being conducted for distress, however, psycho-oncological services were not being utilised thereafter. Referrals to specialists in the field are necessary to ensure the utilisation of tailored psychological support.
Palliative care has been gaining traction in India as well. The National Program for Palliative Care utilises community health workers to ensure its availability even in remote regions. However, according to a meta-analysis, palliative care had no statistically significant improvements in the anxiety and depression levels of patients and caregivers with teams failing to comprehensively describe the psychological symptoms, determine the roles of various stakeholders in interventions, include specific psychological treatment components within the intervention and track progress. Proper training is essential to ensure that these teams have the capabilities to provide palliative care.
National programs such as the Ayushman Bharat—Pradhan Mantri Jan Arogya Yojana provides health insurance up to ₹500,000 per family annually for the poorest 40 percent of the population and those over 70 years of age. The Rashtriya Arogya Nidhi and State Illness Assistance Funds also provide financial assistance for cancer patients. However, it is still insufficient to significantly relieve the financial burden. Additional financial support provided under the government schemes may reduce the distress levels, especially for the low-income groups.
Moving forward, developing a centralised portal that provides a comprehensive list of such groups offering emotional or financial support, or direct referrals to them, could help improve access and bridge the gap between those in need and those providing it.
Furthermore, several NGOs and private cancer support groups offer both financial and emotional support. A survey found that 93 percent of the patients and caregivers felt that they had benefitted from the regular group meetings which they attended to clarify medical queries, receive nutritional guidance, and gain emotional support. Moving forward, developing a centralised portal that provides a comprehensive list of such groups offering emotional or financial support, or direct referrals to them, could help improve access and bridge the gap between those in need and those providing it.
Pre-existing government programmes should be expanded to include psycho-oncological components. This includes India’s First Cancer Care (FCC) initiative which utilises data analytics and AI to devise personalised and effective treatment strategies. Using FCC for research and designing treatments considering the psychological impacts of diagnosis and treatment can help provide holistic care. The Tertiary Care Cancer Centres scheme aims to improve cancer facilities nationwide and accommodations for the provision of psycho-oncological services should be made within these facilities.
The National Cancer Grid in the country should work towards standardising psycho-oncological support and help build capacity for the same. With the growing demands for cancer patients and caregivers, the existing pool of counsellors should be upskilled to conduct distress screening and provide support. It should be ensured that psycho-oncological support is both accessible and affordable. Public-private partnerships have been bolstered in recent years to establish more comprehensive cancer centres and such initiatives should be extended to provide accompanying mental health support.
Overall, while India has made significant strides in terms of cancer treatment, the importance of psychological support for cancer patients and caregivers should be recognised, particularly given the socio-cultural dynamics of the country and demographic factors that contribute to deteriorating mental health. As India continues to invest in infrastructure, incorporating psycho-oncological services could significantly help improve the quality of life and health outcomes for all.
Nimisha Chadha is a Research Assistant at the Observer Research Foundation
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