Researchers have been tracking 200 pairs of patients and caregivers since February and found the latter suffering from post-traumatic stress disorder
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.
What did the study
find?
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.
Who is a caregiver?
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.
How caregivers give
into pressure
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.
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