Search for appropriate literature was performed through the database of SCOPUS, J-Gate,

INTERNATIONAL JOURNAL OF PALLIATIVE CARE, PsycINFO, VOID and Google

Scholar. Studies published before MAY 2020 are included. Using the keywords, “Lived
Experiences, Palliative care, Caregiver, and cancer” most relevant literature was gathered.
Overall, 22 Articles were found which were published on the concept of LIVED
EXPERIENCE in India till 2020 and only 1 article was published on Lived experiences of
caregivers in palliative care setting in Indian setting. All the available abstracts of these 22
articles were read and the full text of over 50 articles worldwide were sourced and read. The
articles were based on their relevance to the study. There is little research related to the lived
experiences of caregivers of advanced cancer patients, especially in Indian Context. Most of
the research focused on the Lived Experience of the patients. Hence, this study aims to
understand the lived experiences of primary caregivers through a holistic & professional
caregivers’ perspective on family caregivers experience in a palliative care setting in the
Indian context. This chapter consists of studies that are of utmost relevance to this research.

Literature review for the current study would be divided in to two parts.

i. Studies related to Lived experiences of family care givers and individuals

ii. Studies about the experiences of Family caregivers of persons diagnosed with Life

threatening illness (cancer) in palliative care setting

Sl Authors, Title, Purpose Research No: of Source or Results

no Year Design subjects instrument
1 Elisabeth To add Qualitative 9 In-depth “Experiencing
Hamrin, knowledge Interviews existential changes”
(1995), &
Experiencing understandi
existential ng the
changes: the concepts of
lived experience complex
of having human
cancer aspects
2 Kruse, Barbara To Parse’s research 8 Extraction “Persevering in
(2004), understand method Female synthesis presence despite
The Meaning the hardships while
of Letting Go: structure bearing witness to
The Lived and wavering decline life
Experience for meaning of unfolds with a new
Caregivers of letting go view”
Persons at the
End of Life

3 Maria, Wiebe, To Hermeneutic 17 Interviews “a broken life world”

Hallstrom understand Phenomenologic families “striving to survive.” 
(2005), the lived al approach (parents,
experience children,
Striving to
of family and
Survive: siblings)
Families’ Lived
Experiences
When a Child Is
Diagnosed with
Cancer

4 Doumit, To study Utrecht School 9 In-depth semi “Living with fears

Myrna, et al the lived of structured and uncertainty, loss
(2008), experiences Phenomenology interviews of happiness, feeling
The Lived of Lebanese of added
Experience of family responsibility, living
Lebanese caregivers in a state of
Family Caregiv emergency, Sharing
ers  of  Cancer P the pain, living the
atients dilemma of truth
telling, disturbed by
being pitied, reliance
on god”

5 Chong and To Hermeneutic 10 2-FGD “Working conditions

Poon (2011), understand Phenomenologic with the team”
“lived the lived al approach “Doctors along with
experiences of experience challenges faced”
palliative home of nurses in
care nurses in palliative
Singapore” homecare
setting.

6 Beasley, To Qualitative 10 interviews “Motivations for

 Brooker et al, understand volunteering, dealing
(2015), the lived with death, dying, and
“The lived experience existential issues,
experience of of the psychosocial
volunteering in volunteerin benefits of
a palliative care g in a volunteering”
biography palliative
service” care

Studies conducted in India

Sl Authors, Year Purpose Research No: of Source or Results

no Design subjects instrument
1 Anthony & “lived Mixed Quali-8 Structured “Caring
George (2018) experiences of method- Quanti-8 interview companionship”
caregivers of triangulatio
cancer patients n
in palliative
care”
2 Rajgopal, “to understand A meta- Women Semi- “Emotional burden
Liamputtong, the lived synthesis of with structured and women's response
&Mcbride experience of qualitative breast interviews towards their
(2019) Australian research cancer breast cancer  diagno
women with Survey with sis were key themes”
breast cancer” open-ended
questions

Recent Studies:

Sl Authors, Title, Purpose Research No: of Source or Results

no Year Design subjects instrument
1 Anna Green, “To understand Qualitative 28 4 FGD “Professional
Jerzmanowska the experiences research, concerns related to
et al, (2018) of professional Grounded caregiving”
caregivers” theory

2 Parola, “To describe Qualitative- 9 Interview “Experience centred

Adriana et al, the lived Phenomenolog on the relationship
(2018) experiences of ical with others”
nurses in “experience of
palliative care” relationship with
oneself”
“exhausting
 experiences”
“rewarding
experiences”
“team as a pillar”

4 Rozve, “to understand Qualitative- 11 Semi- “Resiliency”

Nasrabadi, the lived Van Manen’s structured
Ghiyasvandian experiences of Hermeneutic interview
et al, (2019). patients” phenomenolog
y
5 Chou& Lu “To explore the Qualitative Taiwane Semi- “feeling extreme
(2019) lived se structured anxiety and
experiences of patients interview uneasiness related to
Taiwanese IP chemotherapy”
patients” “experiencing
specific symptoms
related to IP
chemotherapy
injection”
“experiencing
unexpected or severe
physical issues and
psychological
discomfort during
the treatment
period” “feeling
isolated from people
during the treatment
period” “learning
how to manage
adverse effects from
IP chemotherapy”
“worrying about
families, illness
progression, and the
future” “receiving
support from others
and accepting the
diagnosis”

6 Kristina, “to explore the Qualitative- 24 interviews “belief in caring”

Effendy, and experience of Grounded
Engels (2019) family theory
caregivers of
patients with
cancer in
Indonesia”.
 Most of the research on family caregivers seemed to indicate Existential changes,
Psychological and physical concerns, uncertainty, resilience, and life choices as aspects that
could be focused on with the lived experiences of an individual. Professional caregivers
spoke about concerns related to work life, burnout, effect of seeing death and psychosocial
concerns as well.