Original Article

Stress, Coping, and Lived Experiences among Caregivers of

Cancer Patients on Palliative Care: A Mixed Method Research
Lovely Antony, Linu Sara George1, Tessy Treesa Jose2
Department of Community Health Nursing, PVS College of Nursing, Kozhikode, Kerala, 1Department of Fundamentals of Nursing, Manipal College of Nursing,
2
Department of Psychiatric Nursing, Manipal College of Nursing, Manipal University, Manipal, Karnataka, India

Abstract
Aim: The aim of this study is to assess stress and coping among caregivers of cancer patients on palliative care and to acquire a deeper
understanding of their lived experiences. Materials and Methods: A mixed method study was conducted among caregivers of cancer patients
on palliative care using mixed method approach and triangulation design. Data were gathered using self‑administered stress rating scale, brief
COPE inventory, and structured interview schedule. Nested sampling technique was adopted. The sample size for quantitative approach was
eighty and qualitative approach was eight. Results: The results showed that 74% of the participants were females and 30% of them belong
to the age group between 51 and 60 years. Fifty‑four percent of them belong to Hindu religion and 40% were unemployed. Sixty‑two percent
of the patients were dependent on caregivers for all activities of daily living. Assessment of stress revealed that 82% of the participants
had moderate stress and 18% had severe stress. Participants adopted both negative and positive coping. There was a significant negative
correlation (r = −0.722, P = 0.001) between stress and coping. Similar findings were also observed in the phenomenological approach. The
theme evolved was “caring companionship to palliative care.” Conclusion: Palliative caregiving is stressfull, challenging and can impact
the caregiver’s physical, emotional, psychological, and social well‑being. Understanding lived experiences of caregivers of cancer patients
on palliative care is important for the health professionals to improve the support, guidance, and education given to the caregivers of cancer
patients on palliative care.

Keywords: Caregivers of cancer patients, coping, mixed method, palliative care, stress

Introduction with life‑threatening illness by means of early identification,

assessment, and treatment of pain by providing physical,
Cancer is one of the leading causes of death globally and was
psychological, and spiritual care under supervision of palliative
responsible for 8.8 million deaths in 2015. The number of
team.[5]
new cases is expected to rise by about 70% over the next two
decades.[1] In India, the number of new cancer cases in 2016 was The philosophy behind palliative care is to assist patients and
around 14.5 lakhs and the figure is likely to reach 17.3 by 2020.[2] their families in achieving the best quality of life surrounded
Patients diagnosed with cancer are said to be the most vulnerable by their loved ones. Palliative caregiving is stressful,
group in the society. Cancer affects not only the patients but multidimensional, and 24‑h responsibility, which may be
also his/her entire family. Treating the cancer patient is often an shouldered alone.[6] It is challenging and can impact the
exercise of treating the part if not the whole family of the patient.[3] caregivers’ physical, emotional, psychological, and economic
In addition to causing distress to the patient, it puts financial, aspects of life.[7]
personal, social, and health stress on family members. However,
in the later stages of life, many people would prefer palliative
Address for correspondence: Dr. Linu Sara George,
care and opt to be at home surrounded by their family and friends Department of Fundamentals of Nursing,
with support and supervision from palliative care team.[4] Manipal College of Nursing, Manipal, Karnataka, India.
E‑mail: [email protected]
Palliative care is an approach that improves the quality of life
of patients and their families facing the problem associated
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Access this article online Commons Attribution‑NonCommercial‑ShareAlike 4.0 License, which allows others to
Quick Response Code: remix, tweak, and build upon the work non‑commercially, as long as appropriate credit
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www.jpalliativecare.com For reprints contact: [email protected]

DOI: How to cite this article: Antony L, George LS, Jose TT. Stress, coping, and
10.4103/IJPC.IJPC_178_17 lived experiences among caregivers of cancer patients on palliative care:
A mixed method research. Indian J Palliat Care 2018;24:313-9.

© 2018 Indian Journal of Palliative Care | Published by Wolters Kluwer - Medknow 313
 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

Purpose of the study Stress rating scale was a 28‑itemed five‑point Likert scale with
The purpose of the study was to assess stress and coping among five domains such as physical, psychological, social, economic,
caregivers of cancer patients on palliative care and to acquire and spiritual. The minimum score was 0 and maximum score
a deeper understanding of their lived experiences. was 112. The brief COPE inventory was a standardized tool
developed by Carver, Scheier, and Weintraub (1997). It was a
Objectives of the study
four‑point Likert scale with 28 items. The minimum score was
The primary objectives of the study were to:
28 and maximum score was 112. The measuring instruments
• Assess the level of stress among caregivers of cancer
were validated with nine subject experts in the field of palliative
patients on palliative care as measured by stress rating
medicine, palliative psychosocial work, palliative care nursing,
scale
oncology nursing, psychiatric nursing, and community health
• Identify the coping adopted by caregivers of cancer
nursing. Reliability of stress rating scale was established by
patients on palliative care as measured by brief COPE
administering it among 20 subjects. Reliability coefficient
inventory
was computed using Cronbach’s alpha and it was found
• Explore and describe the lived experience of caregivers
reliable (r = 0.83). The reliability of the standardized English
of cancer patients on palliative care using a qualitative
version of brief COPE inventory established by Carver (1997)
approach.
was 0.88. Reliability of the Malayalam‑translated brief COPE
The secondary objectives of the study were to: inventory was established by the researcher using Cronbach’s
• Determine the relationship between stress and coping alpha and was found to be 0.93.
adopted by caregivers of cancer patients on palliative care
Statistical methods
• Elaborate in‑depth experiences of caregivers, in relation
The experiences of eight caregivers of cancer patients on
to the severity of stress experienced during the palliative
palliative care were gathered and analyzed. Validation of
care.
the data was done with participants and subject experts in
the field of palliative medicine, medical surgical nursing,
Materials and Methods community health nursing, and qualitative research. Data
This is a mixed method study conducted in selected villages collected were analyzed using SPSS version 16.0 for
using triangulation design. Both descriptive survey approach quantitative analysis (SPSS Inc., Chicago, IL, USA) and open
and qualitative phenomenological approach were adopted to code software 4.3 (OPC 4.3) for qualitative analysis (ITS and
assess stress, coping, and lived experiences among caregivers Epidemiology, University of Umea).
of cancer patients on palliative care. The study was conducted Both quantitative and qualitative data were merged in the area
between March 1, 2017, and April 30, 2017. Family caregivers of stress, coping, and the lived experiences at the analytical
of cancer patients on palliative care who had been providing phase of the continuum. Qualitative data were transcribed
palliative care at home for at least 3 months were included in and translated to English and were analyzed using steps of
the study. Paid caregivers and distant relatives were excluded Colaizzi’s process for phenomenological approach. Extraction
from the study. of subthemes and categories describing the phenomenon were
Nested sampling technique was adopted for the mixed method, derived.
i.e. for descriptive survey approach – to assess stress and coping
among caregivers, purposive sampling technique was used. Results
Data were collected from 80 participants. Informed consent was
Demographic characteristics
taken after giving participant information sheet and explaining
Data in Table 1 show that 24 (30%) participants belong to the
the purpose of the study. Participants who were included in
age group between 51 and 60 years. Seventy‑five (93.7%) of
quantitative approach and those who were found to have severe
them were females. Hindus dominated as far as religion was
stress on stress rating scale and able to communicate verbally
concerned, i.e. 43 (53.7%). Seventy (87.5%) of them were
were included in qualitative phenomenological approach
married and living with spouse. Thirty‑eight (47.5%) belonged
using semistructured interview focusing on stress and coping.
to nuclear family. With reference to educational qualification,
Data saturation was achieved in qualitative phenomenological
18 (22.5%) of them were graduates and 4 (5.0%) of them had
approach upon interviewing eight participants. Thus, the sample
no formal education. Thirty‑two (40.0%) were unemployed
size for qualitative approach became eight. The quantitative
or homemakers. Thirty‑five (43.7%) participants had
and qualitative data were collected simultaneously by having
monthly income less than Rupees 5000. Thirty‑two (40.0%)
equal importance on both strands. Administrative permission,
of the participants were spouses. Major earning member
institutional ethics committee permission, and CTRI registration
was found to be the patient among 29 (36.2%) of them.
were obtained (CTRI/2017/04/008284).
Forty‑one (51.2%) of them were providing palliative care
Measures for 1–3 years. Thirty‑six (45.0%) of them received major
Data were gathered using self‑administered stress rating scale, support to provide palliative care from family and 30 (37.5%)
brief COPE inventory, and structured interview technique. received support from Karunya Fund of Kerala Social Security

314 Indian Journal of Palliative Care ¦ Volume 24 ¦ Issue 3 ¦ July-September 2018

 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

Table 1: Frequency and percentage distribution of sample Table 1: Contd...

characteristics (n=80) Sample characteristics Frequency (%)
Sample characteristics Frequency (%) Siblings 1 (1.3)
Age (years) In‑laws 3 (3.8)
21–30 9 (11.2) Duration of palliative care (years)
31–40 16 (20) <1 29 (36.3)
41–50 19 (23.8) 1–3 41 (51.2)
51–60 24 (30.0) >3 10 (12.5)
61–70 12 (15) Major support to provide palliative care
Gender Family 36 (45.0)
Male 5 (6.3) Friends 4 (5.0)
Female 75 (93.7) Voluntary associations 4 (5.0)
Religion Karunya fund 30 (37.5)
Christian 20 (25) Health insurance 6 (7.5)
Hindu 43 (53.7) Care dependency of patient
Muslim 17 (21.3) Eating and drinking 7 (8.8)
Marital status Toileting 6 (7.5)
Unmarried 4 (5.0) Hygiene and grooming 17 (21.3)
Married and living with spouse 70 (87.5) All activities of daily living 50 (62.4)
Widowed 6 (7.5) Dependency level
Type of family Partially dependent 67 (83.8)
Nuclear 38 (47.5) Totally dependent 13 (16.3)
Joint 37 (46.2)
Extended 5 (6.3)
Mission (KSSM). Fifty (62.4%) patients were dependent for
Educational qualification
all activities of daily living. Sixty‑seven (83.8%) patients were
No formal education 4 (5.0)
partially dependent and 13 (16.2%) were totally dependent on
Lower primary school 14 (17.5)
Upper primary school 11 (13.7)
caregivers.
High school 13 (16.3) Description of stress among caregivers of cancer patients on
Higher secondary 14 (17.5) palliative care
Graduate 18 (22.5) The data in Figure 1 show that 66 (82%) of the participants
Postgraduate and above 6 (7.5)
had moderate stress and 14 (18%) had severe stress whereas
Occupational status
none had mild stress or no stress.
Government job 1 (1.3)
Private job 15 (18.7) Similar findings were also observed in the phenomenological
Self‑employed 8 (10.0) approach. Subjects mentioned that the normal household
Agriculture 5 (6.3) duties inside and outside the home were shifted to the
Daily wager 17 (21.3) caregivers, particularly spouses; as a result, the caregivers
Pensioner 2 (2.5) became extremely busy and felt stress and strain in their
Unemployed 32 (40.0)
daily lives. The subthemes evolved were “living with fear
Monthly family income in rupees
and uncertainty” and “stress and strain.” Participants quoted,
<5000 35 (43.7)
“Really it is difficult to sleep…. Every time, some tension
5001–10,000 23 (28.8)
10,001–15,000 4 (5.0)
is in my mind…. Is he alright? Will he fall? Is he breathing
>15,000 18 (22.5) normally? Will anything happen to him? Such tensions are
Relationship with the patient always there….”
Spouse 32 (40.0) Stress among caregivers of cancer patients on palliative care
Parent 27 (33.7)
Data in Table 2 show that minimum score in the psychological
Children 15 (18.7)
domain is 9, maximum is 32, and mean ± standard deviation
Sibling 3 (3.8)
(SD) is 22.47 ± 5.59, whereas minimum scores in the social
In‑laws 3 (3.8)
Major earning member
domain is 4, maximum is 12, and mean ± SD is 7.21 ± 2.32.
Patient 29 (36.2) Similar findings were also observed in the phenomenological
Spouse 16 (20.0) approach. The caregivers became extremely busy with
Parents 17 (21.2) responsibilities inside and outside home and felt stress and
Children 14 (17.5)
strain in their daily lives. They experienced physical and
Contd... emotional strain while providing palliative care which was

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 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

about my appearance! I do not care about myself as much as

0% 0%
my son’s well‑being.”
Participant H said, “Last year, I had a fall and fractured my
18% Severe stress right hand.… I still have pain on that hand. But, when I see
him suffering constantly, all my pain just vanishes.”
Moderate stress
Participant C said, “For the last 2 years, there has been no
Mild stress leisure time in my life. I am working as a tailor in a readymade
garment manufacturing firm. After finishing my routine here, I
82% No stress rush for work. When it happened everything changed, my life
has changed; now, it is just with him, and that is all. I haven’t
gone anywhere for 1 year leaving home only to visit the nearby
temple and workplace.”
Figure 1: The level of stress
Participant F said, “Because most of the time I am with my
ill daughter, I do not have time for other leisure activities.
Table 2: Description of the domain scores of stress A person caring a palliative patient is always busy taking care
among caregivers (n=80) of the ill person. It has been ages since I have gone out. I spend
Domains of stress Possible score Obtained score Mean±SD most of the time with her, How can a mother go out and enjoy
Physical 0–32 9–27 16.46±3.47 leaving her daughter in agony?”
Psychological 0–36 9–32 22.47±5.59
Coping among caregivers
Social 0–12 4–12 7.21±2.32
Data presented in Figure 2 show the positive coping adopted
Spiritual 0–16 9–16 12.81±1.84
by caregivers of cancer patients on palliative care. Data reveal
Economic 0–16 4–15 9.25±2.92
SD: Standard deviation
that 66% of them used humor, 90% used religion, 68% utilized
planning, and 83% used active coping.
depicted in subthemes such as financial difficulty, physical Data presented in Figure 3 show the negative coping adopted
and emotional strain, self‑neglect, and lack of leisure time. by caregivers of cancer patients on palliative care. Data reveal
that 56% of them used denial, 28% were involved in substance
Participant C said, “A definite income of our family has
use, 52% used behavioral disengagement, and 66% utilized
ceased…. For our necessities, these days we have to depend
self‑distraction.
on other people. My income is hardly sufficient to meet the
household expenses. We had a housing loan and educational Similar findings were also observed in the phenomenological
loan to repay. With both our income, we used manage fairly approach. The main coping strategies used by caregivers had
well. His sudden illness has brought financial crisis in our deep‑rooted faith in God and prayers, support from family
life.” and friends, support from religious institutions, support from
health and palliative team, support from KSSM, and inspiration
Participant E said, “Financially, we are in great trouble because and motivation from other palliative caregivers and palliative
the only income to our family was from agriculture. I am a care patients. For many caregivers, their strong faith and belief
typical housewife…. All financial aspects was taken care by in God helped them to cope with the distressing situation
him…. Our family has no other income…. My husband used because they thought that their lives were anchored by God.
to handle all matters with respect to our children, their studies, The following narratives of participants help us to have a better
and all other things pertaining to the financial matters; all these understanding of coping.
things have been affected greatly…. For our necessities, these
days we have to depend on other people.” Participant A said, “I have learned to overcome it with the help
of prayers and blessings of God.”
Participant F said, “I have pain in my legs and hands …I too
have serious problem of backache and hypertension. But, when Participant B said, “Now I have surrendered everything
I see her suffering each moment, all my pain is forgotten.” in God’s hands. I accept that God has his own plans and
everything has its own time. I am hoping that, Allah will take
Participant E said, “When he is well, I feel alright. But, when care of everything. I trust in God. It helps a lot to have faith
he deteriorates or has the pain, I feel disturbed. The worst thing in Allah. I just pray every day for strength to be able to do it.
is to see him suffering with pain.” I am praying to Allah for strength and courage. I think it really
Participant B said, “Because most of the time I am with my ill helped because it gave me peace and inner strength.”
son, I do not have time to care for myself. It has been ages since Participant C said, “I became stronger in mind, because I
I looked at the mirror. I do not care for myself before, such as didn’t have another choice. I just grew a lot. I learned to pray
putting henna to my hair, polishing my nails, or wearing new a lot. I learned to put myself in God’s hands especially when
cloths. I spend most of my time with him, why should I care he was going through what he was going through. I am just

316 Indian Journal of Palliative Care ¦ Volume 24 ¦ Issue 3 ¦ July-September 2018

 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

100% 90% 88%

90% 85% 80%
80% 68%
80% 68% 70% 63% 66%
66%
70% 56%
60%
60% 52%
50% 50%
40% 40%
30% 28%
20% 30%
10% 20%
0% 10%
Humor Religion Use of Planning Use of Positive 0%
instrumental emotional reframing

Denial

Substance use

Behavioral
disengagement

Self-blame

Venting

Self-distraction
support support

Figure 2: Positive coping adopted by caregivers of cancer patients on

palliative care

praying to God to give us strength and guide us through these

Figure 3: Negative coping adopted by caregivers of cancer patients on
hurdles of life. palliative care
Participant D said, “I think I got help from the faith that I had
in God as I knew that he is the only one who could help me. • Rewarding experience
Let what God has planned for me take place…. When I feel • Trusting relationship with palliative team
really stressed, I pray. It is very helpful. It helps to reduce my 4. Shield of strength and courage
worry. God is really protecting us. I firmly believe that it is • Strengthened spirituality
because of my prayers that at least he is alive till now. I know • Deriving mental stamina
that God will help me cross that bridge when the time comes….
Please keep us in your prayers. 5. Stress and strain
• Financial difficulty
Relationship between the stress and coping adopted by • Physical and emotional strain
caregivers of cancer patients on palliative care • Self‑neglect
Since the data were following the normality, Pearson’s • Lack of leisure time
correlation was computed to assess the relationship between
stress and coping. 6. Living with fear and uncertainty
• Disbelief
The data presented in Table 3 show that there is a significant • Disturbed sleep
negative correlation (r = −0.722, P = 0.001) between stress and • Denial
coping adopted by caregivers of cancer patients on palliative • Mental agony.
care. The study implies that as the stress increases, the coping
decreases. The phenomenon emerged out of the analysis of the experience
was “caring companionship to palliative care.” The model
Derivation of qualitative subthemes and themes developed to explain the phenomenon is depicted in Figure 4.
The experiences of eight caregivers of cancer patients on
palliative care were gathered and analyzed and evolved with Caregivers of cancer patients on palliative care experience
six themes and 24 subthemes. various stressful moments along the pathway of his/her illness.
It is a 24‑h responsibility which may be shouldered with
The emerged themes and subthemes are as follows: support from family members, friends, and palliative team.
1. Adaptation to life It is challenging and can impact the caregiver’s physical,
• Adding life to days emotional, psychological, and social well‑being. However,
• Inspiration from others the caregivers are trying their level best to make the patient
• Physical care as comfortable as possible with the support of family, friends
• Acceptance of disease and palliative care team which is represented by supporting
• Pleasant memories hands. These attributes represent themselves as the model for
• Systematic planning providing caring companionship to palliative care and to add
2. Pillars of support life and cheer to the days of the cancer patient on palliative care.
• Support from family
• Social support Discussion
• Support from health and palliative team
Stress among caregivers of cancer patients on palliative care
3. Trusting relation ship The present study findings showed that 82% of the participants
• Caring companionship had moderate stress and 18% had severe stress whereas none
• Strong bond of love had mild stress or no stress. Similar findings were also observed
• Finding new meaning of togetherness in the phenomenological approach.

Indian Journal of Palliative Care ¦ Volume 24 ¦ Issue 3 ¦ July-September 2018 317

 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

This study findings also revealed that minimum score obtained health with mean ± SD 2.43 ± 1.41, and effect on mental health
in physical domain is 9 and maximum is 27 with a mean ± SD with mean ± SD 1.68 ± 0.85.[8]
of 16.46 ± 3.47, minimum score in the psychological domain
The present study findings support the findings of the study
is 9 and maximum 32, mean ± SD 22.47 ± 5.59, minimum
conducted in Pune. It revealed that the disease has varied impact
score in the social domain is 4 and maximum 12, mean ± SD on the caregiver’s health. A large number of caregivers (52%)
7.21 ± 2.32, minimum score in the spiritual domain is 9 and reported feeling continually tired and exhausted. Lack of
maximum 16, mean ± SD 12.81 ± 1.84, and minimum score sleep was reported by a sizeable number of caregivers (46%).
in the economic domain is 4 and maximum 15, mean ± SD Inability to focus and mental confusion were reported by 46%
9.25 ± 2.92. of caregivers. The study revealed that overall stress level
The present study supports the study conducted among 75 among caregivers is 5.18 ± 0.26 on a scale of 0–10.[9]
caregivers of cancer patients in Haryana which revealed Coping among caregivers of cancer patients on palliative care
physical burden with a mean ± SD 9.23 ± 2.55, disruption of The present study findings showed that caregivers adopted
family activities with mean ± SD 7.85 ± 2.21, disruption of negative as well as positive coping strategies. Fifty‑six percent
family leisure with mean ± SD 6.09 ± 2.05, disruption of family of them used denial, 28% were involved in substance use, 52%
interaction with mean ± SD 2.59 ± 1.56, effect on physical used behavioral disengagement, 63% utilized self‑blame, 68%
used venting, and 66% utilized self‑distraction, whereas 66%
Table 3: Correlation coefficient computed between stress of them used humor, 90% used religion, 85% used instrumental
and coping scores (n=80) support, 68% utilized planning, 88% used emotional support,
80% was involved in positive reframing, 84% used acceptance,
Variable r P
and 83% used active coping.
Stress −0.722 0.001*
Coping The present study supports the findings of the study conducted
P<0.05, *significant to assess family caregiver coping in end‑of‑life cancer care

Figure 4: Conceptual model of the phenomenon of lived experiences of caregivers of cancer patients on palliative care

318 Indian Journal of Palliative Care ¦ Volume 24 ¦ Issue 3 ¦ July-September 2018

 Antony, et al.: Stress, coping, and lived experiences among caregivers of cancer patients

which revealed that most prominent ways of coping reported in five overlapping themes: (a) environmental, (b) roles and
by participants were plan full problem‑solving, seeking relationships, (c) physical and mental health, (d) spirituality,
social support, self‑controlling, escape avoidance, accepting and (e) priorities. The participants dealt with the transitions
responsibility, and positive reappraisal.[10] through the processes of (a) coming to terms, (b) connecting
The present study also supports the findings of a review of with others, and (c) redefining normal.[15]
literature on stress and coping among breast cancer patients
and family caregivers which revealed four predominant coping Conclusion
mechanisms for both patient and family, namely, (a) seeking social Palliative care for cancer patient affects not only the patients
support, (b) reliance on God, (c) positive suggestion/attitude or but also their caregivers. When giving palliative care to
reaffirmation, and (d) acquisition of information and education.[11] cancer patients, caregivers are confronted with physical and
Relationship between stress and coping adopted by caregivers emotional challenges. During palliative care, caregivers
of cancer patients on palliative care assume significant roles to support the patients. Although
The present study findings revealed that there is a significant caregiving becomes a full time job, the caregivers are trying
negative correlation (r = −0.722, P = 0.005) between stress and their level best to add life and cheer to the days of cancer
coping among caregivers of cancer patients on palliative care. patient on palliative care by providing caring companionship.
This study also supports a study conducted to assess the level Financial support and sponsorship
of burden and coping among caregivers of terminally ill Nil.
cancer patients at Neiyyur, Kanyakumari. The study findings Conflicts of interest
revealed that 68% of the caregivers had moderate burden and There are no conflicts of interest.
32% had severe burden. Twenty‑two percent of the caregivers
had minimal coping and 78% had moderate coping. There was
negative correlation between caregivers burden and coping (r References
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Indian Journal of Palliative Care ¦ Volume 24 ¦ Issue 3 ¦ July-September 2018 319