14-05-2025
AIIMS study maps mental health of cancer caregivers: How does this affect patient recovery?
The wife of a 36-year-old colorectal cancer patient from Bulandshahr sits by his bedside, a wan smile covering up her broken self. Ever since the daily wage labourer was diagnosed, she has had to double up as a bread-earner — she took to tailoring — and a caregiver. With chemotherapies and travels to Delhi bleeding her resources, she depends on community kitchens to sustain herself. She sleeps in safe corners in the campus of the All India Institute of Medical Sciences (AIIMS), Delhi, to be close to her husband while her daughter has become a part-time domestic helper. 'She feels so beaten and low that she needs immediate mental therapy herself to be her husband's support for the cancer battle ahead,' says Prerna Gosain, psychologist at AIIMS.
She has also been counselling a 50-year-old woman cancer patient who has lost the will to fight as she has an unresolved grief of losing her father to cancer despite her best efforts at caregiving. Both of Gosain's case studies are part of a study on a group of patients and caregivers at the Dr BR Ambedkar Institute Rotary Cancer Hospital (IRCH), AIIMS, for understanding the psychological impact of cancer on caregivers. 'They face a disproportionate amount of burden due to the unique challenges associated with caring for a cancer patient,' says Dr Abhishek Shankar, Assistant Professor, Department of Radiation Oncology, IRCH. 'So far, we did not have any study on caregivers and had relied on Western studies. When a patient comes to the hospital, the whole family comes together. The role transition happens within the family and one of the family members becomes an immediate caregiver,' he says. These challenges include physical, emotional, social and financial strains, leading to decreased quality of life and increased risk of mental health issues.
Researchers have been tracking 200 pairs of patients and caregivers since February and found that they experience significant emotional distress, including anxiety, depression and post-traumatic stress disorder, both during treatment and after recovery. Topping the list are post-treatment psychological issues, long-term survivorship issues and challenges of reintegrating with society. The emotional strain of caregiving results in burnout and compassion fatigue. This can impact the survivor's morale too.
A caregiver is a person who helps a cancer patient but is not paid to do so. Caregivers may be partners, family members or close friends. Most often they are not trained personnel. That's why, Dr Shankar explains, addressing the psychological needs of cancer survivors and their caregivers is essential, not just for improving quality of life but for ensuring overall holistic recovery.
'Caregivers, often the silent sufferers, experience parallel emotional distress and burnout, and their well-being directly affects the survivor's long-term outcomes. Many caregivers have no formal training and are expected to provide both physical and emotional support while managing their own lives and mental health,' he adds. A caregiver's psychological burden often mirrors or even exceeds that of the patient, particularly when they lack adequate support systems. 'We can strengthen the entire survivorship ecosystem by acknowledging and supporting caregivers,' says Dr Shankar.
Gosain elaborates on the multi-pronged pressures faced by the colorectal cancer patient's wife. 'During emergencies, she even sought public donations to meet critical needs such as procuring blood (costs not entirely covered by government health schemes). This hit to her sense of dignity, lack of shelter and employment wilted her,' she says.
The couple's teen daughter stepped into adult responsibilities, attending school, managing household tasks, cooking meals and working part-time as a domestic helper. This role transition highlights a concerning pattern of early parentification and exposure to prolonged stress. 'This family has compounded psychological stressors, chronic caregiver fatigue and survival anxiety. In fact, the daughter runs the risk of psychological scarring because of the premature burden of adult role-playing,' she adds.
Another psychologist, Neeti, who was looking into the case of the 50-year-old female patient, says that her unresolved trauma of losing her father was compounded not just by her own diagnosis but the breakdown of her marriage. 'Her husband, driven by unfounded fears of disease transmission and genetic risk, chose to separate from her, abandoning her emotionally at a vulnerable time,' says Neeti.
The patient currently lives with her elderly mother and sister, both of whom provide financial, emotional and logistical support. Still she continues to feel emotionally disconnected within the household despite diverting herself by writing poems, painting and cooking. As the patient grapples with her reality and has a guilt of being a burden to everybody, her sister — the primary caregiver — developed signs of chronic stress and sleep difficulties. 'Psychological support focussed on processing grief, identity reconstruction or a process by which people respond to stimuli and develop a new sense of self, and expressing every emotion,' adds Neeti. That's because the caregiver may have a higher sense of helplessness and futility than the patients and need to be steered back on course.
