Topic : Cancer and its impact on caregiver well being.
Introduction
Cancer has been defined as a disease identifiable by an abnormal, uncontrolled proliferation
of cells in the body which impede the normal functioning and growth of other cells by
starving them of nutrients. Causes of cancer are numerous in nature commonly including
viruses, environmental toxins, diet, and inherited genetic variations but its psychological
impact on people, across all life spans is the same.
A diagnosis of cancer often comes as a premature death sentence which brings in its wake an
insurmountable amount of physical and mental distress. Owing to its ever growing
prevalence along with its debilitating and life threatening nature, the treatment of cancer has
established itself as a subspecialty in biology/medicine and psychology named as oncology
and psycho-oncology respectively.
Psycho-oncology aims to assess and treat psychological, behavioral and social distress
associated with different stages of cancer that may influence the disease process. From
coming to terms with the diagnosis, amputations, or end of life, psycho-oncologists work to
make the struggle for survival significantly smoother for patients.
Over the years, a lot of literature has accumulated exploring the “causes” of psychological
distress in cancer patients and what could be the potential “protectors” for the same. While
literature shows tireless efforts to shortlist causes and eliminate them through various
interventions, a gap in these studies is starkly evident. Cancer related research in psychology
has disregarded, time and again, the implications of the disease on the patients’ caregivers.
A dearth in literature examining caregivers’ mental health is evident. Relatively speaking,
caregivers have been given a significantly less amount of attention in psycho-oncological
research as compared to the actual cancer patients. While caregivers’ contributions to the
well being of the patient have been explored thoroughly, their own experiences and mental
distress associated with cancer are sparingly taken into consideration. Although it has been
established that caregivers are the supporting backboard of a cancer survivor’s journey and
often lie second in the line of fire of financial, psychological and emotional depletion brought
upon by cancer treatment, the efforts made to study caregiver psychology and associated
interventions have been unimpressive so far.
Considering what all caregivers have on their plates, it is to be expected that the level of
psychological distress they must undergo is overbearing for a normal individual to cope with.
Yet still the number of researches and interventions designed specifically for improving
caregivers' mental and emotional functioning remains scarce.
A limited number of studies explore the impact of cancer on patient’s caregivers when they
are the ones most closely impacted by the developments in the actual patient’s struggle with
their disease. From accepting the diagnosis and restructuring their daily life around the
disease along with juggling to fulfill social, occupational and personal roles, caregivers also
have to come to terms with the impending death sentence given to their loved ones and plan
for the future in a sustainable manner.
Although caregivers are supporters to patients and not actual survivors of cancer, their mental
health is of the utmost importance and shouldn’t be disregarded in the ‘holistic’ approach
towards dealing with cancer. Caregivers interventions need not be limited to grief or
information based support groups but must expand to interventions focused on enhancing
their relationship with the patient, becoming self reliant, coping with the demands of their
and the patients’ lives, managing time for work, social life, and most importantly themselves.
Living with cancer can be conceived as a dynamic, ongoing process and providing care to
cancer patients also can be seen as such. Three phases have been distinguished during the
cancer patient’s illness: the initial or “acute” phase, the “chronic” phase, and “resolution.”
During the acute phase the family is shocked, stunned, and frightened. In the chronic phase,
when initial treatment has been endured and the patient has been released from the hospital,
family members have to take on new and additional responsibilities. During the third phase,
resolution, the family anchors itself in either survivorship or the bereavement process. All
three periods may lead to considerable anxiety and perceived pressure in family members,
particularly in the primary caregivers. Research into cancer caregiving is scarce, especially
with regard to the chronic phase, on which hardly any information is available.
The majority of studies regarding caregiving involve family members of patients with mental
disorders such as schizophrenia or dementia. These studies revealed that interpretations of
the relation between characteristics of the caregiving situation and caregiver outcomes may
be guided by the cognitive stress theory of Lazarus and Folkman. According to this theory,
contextual elements as well as personal perceptions of the situation play a major role in
explaining variations in caregiver outcomes. Although caregiver experiences can be
conceived as specific caregiver outcomes, the health of the caregiver may be interpreted as a
more generic caregiver outcome in the longer run.
Factors that are mentioned to be associated with caregiver outcomes can be divided into
three categories: 1) characteristics of the caregiver 2) characteristics of the patient, and 3)
characteristics of the care situation. Subsequently, caregiver experiences at 3 months may
have an effect on the caregiver’s mental health at 6 months
Background characteristics of the caregiver that may influence caregiver outcomes include
age, gender, living situation, socioeconomic status, and type and quality of the relationship
between the care recipient and caregiver. Women, especially those at a younger age, tend to
perceive caregiving as more negative than (older) men and report higher levels of
psychological distress even when the quality of the patient’s health and/or the amount of care
provided is controlled for. Compared with other informal caregivers, partners in particular
are expected to bear a large proportion of the stresses and burdens that follow in the course of
cancer. A high quality patient caregiver relationship (i.e., the absence of a distressed
relationship) can be conceived as a necessity when care is provided over a longer period.
Less consistent findings were reported for the association between socioeconomic status and
caregiver outcomes. Although caregivers with a relatively low socioeconomic status can be
assumed to report a higher burden.
Although the caregiver’s mental health often is studied as an outcome, their initial level of
mental health may be an important resource that affects caregiver outcomes (e.g., negative
caregiving experiences or health outcomes may be accentuated by caregivers who previously
experienced depression).
Patient characteristics that have been cited in the literature as having an influence on
caregiver outcomes include disease-related and treatment-related characteristics, dependency,
and physical and psychological symptoms. However, no consistent research findings have
been reported, with some studies showing that patient characteristics are related to negative
caregiver outcomes and others reporting no such relation. In gerontologic studies, it generally
was observed that the patient’s mental health was associated with more negative responses in
caregivers than the patient’s physical health. An oncologic study regarding caregiving
revealed that only a patient’s dependency determined caregiver experiences (i.e., in terms of
burden) and that other patient characteristics, such as disease-related and treatment-related
symptoms, were not associated at all with caregiver experiences or mental health (e.g.,
mood).
Care characteristics may include duration of care, intensity of care, and different types of
care. The more confining the care tasks are (i.e., the less time-flexible and the more
disruptive they are to the caregiver’s schedule), the more likely they are to create negative
consequences. Personal tasks (e.g., feeding and washing the patient) appeared to be
perceived as more difficult and burdensome than non personal tasks (e.g., buying groceries).
Moreover, because providing care requires time, the time available for other activities such
as household chores, leisure, and visiting family and friends may be expected to decrease.
Caregiver experiences has been defined by a broad range of varying constructs,
predominantly expressed as an overall measure, e.g., burden, strain, or role overload. The
mental health of the caregiver also has been defined differently, e.g. Psychological distress,
well-being, psychological and physical symptoms, depression, life satisfaction, and
self-reported health.
To summarize, to our knowledge, with a few exceptions, previous studies regarding caregiver
outcomes used descriptive, cross-sectional designs and the majority of research was
conducted among the caregivers of patients with cognitive disorders. In addition, previous
research revealed that several characteristics may have an important influence on caregiver
experiences and mental health, and can be categorized into caregiver characteristics, patient
characteristics, and care characteristics.
Methodology :
Subjects:
3 caregivers, aged 00, 00, 00, of cancer survivor patients were selected through convenience
and snowball sampling.
Measures:
A semi structured interview with 3 caregivers of cancer survivor patients was taken.
Survey
Demographic details :
Name : AB
Age : 52 years
Gender : female
Caregiving duration : 6 years
Interview
How long have you been a caregiver ?
● I took care of my husband (cancer patient) for about 6 years.
Did you feel pressure or distress because of caregiving?
● Yes, sometimes I was fed up with how much I had to do but if I didn’t do it I felt
extremely guilty. It was the guilt that bothered me more than stress or pressure.
Did you keep up with leisure activities/hobbies that you enjoyed before caregiving?
● When I was caring for my husband I was lucky if I could get to drink a cup of tea in
peace. It wasn’t because I didn’t have the time but I couldn’t relax or unwind enough
to enjoy the experience. I managed my duties but was always afraid that something
bad might happen the next moment and that didn’t allow much head space to indulge
in any leisure activity.
Do you feel irritable or lose your temper with others?
● Yes. I get annoyed by people who are tardy or who procrastinate. Why put off
something you can do right now to tomorrow. Work will pile up if you let it. I get
irritated by people who complain about the problems they create for themselves.
Did you need a cigarette(s) or coffee or alcohol or any such substance to make it through the
day or to cope with the pressure of caregiving?
● I have never taken drugs or smoked in my life to make my problems less. When I was
caring for my husband I used to cry a lot, visit my family and rely on their support in
order to cope with things.
How often did you feel overwhelmed by all you did for your husband?
● Initially everyday but then I got used to it.
Did you feel burned out?
● By my job…yes but not by taking care of my husband. I got tired sometimes but
always managed to push forward, both at home and work, eventually.
Is there anyone to take care of you?
● Yes, I have my family, my daughters to take care of me.
Do you feel lonely or isolated?
● Sometimes, when I see others moving on to the next chapters of their lives. I don’t feel
needed as much as before and that makes me feel a bit worthless. My daughters have
made their careers and gotten married, I can only expect to see them a few times a
year now. It would have been good to have the support of a partner but there is
nothing I can do about it now.
Are there any physical symptoms (headaches, stomach problems, back pains) that you felt
when taking care of your husband?
● Yes, I developed cervical pains five years ago, they still bother me to this day. I had a
hunched over posture most of the time and developed a hump on my neck. I’ve had
three cervical attacks till date where I get a fever and can’t move my head in any
direction. I have been going to physiotherapy for the past few months.
References :
Carey PJ, Oberst MT, McCubbin MA, Hughes SH. Appraisal and caregiving burden in
family members caring for patients receiving chemotherapy. Oncol Nurs Forum 1991;18:
1341– 8. 33.
Siegel K, Ravies VH, Mor V, Houts P. The relationship of spousal caregiver burden to patient
disease and treatmentrelated conditions. Ann Oncol 1991;2:511– 6. 34.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly correlates of
feelings of burden. Gerontologist 1980;20:650 –5. 35.
Baillie V, Norbeck JS, Barnes LEA. Stress, social support, and psychological distress of
family caregivers of the elderly. Nurs Res 1988;37:217–22. 36.
Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz JC. The influence of cancer
patient symptoms functional states on patient depression and family caregiver reaction and
depression. Health Psychol 1993;12:277– 85. 37.
Given BA, Given CW, Helms E, Stommel M, DeVoss DN. Determinants of family care giver
reaction: new and recurrent cancer. Cancer Pract 1997;5:17–24. 38.
Gilhooly ML. The impact of caregiving on care-givers: factors associated with the
psychological well-being of people supporting a dementing relative in the community. Br J
Med Psychol 1984;57:35– 44.
