A Phenomenological Study of
The Experience of Hospice
Volunteers in a Palliative Care
Setting in Japan
University of Surrey
Faculty of Health and Medical Science
MSc Health and Social Care
AI KOBAYASHI
2012. 7. 9

Hospice volunteers make a difference
to patients’ Quality of Life
as well as their own QOL

Seeing someone dying in a hospice is
not frightening but
a valuable experience

Volunteers need the support and
understanding of health care professionals
Volunteerism as a concept
<European countries>
•
•
History of church based volunteering
Autonomy of individuals
<Japan>
•
Mutual aid group in communities
A sense of obligation
Cultural borrowing from abroad
•
Individuals’ autonomy and interests
•
•

Aim
To explore the lived experience of hospice
volunteers

Research question
What is it like to be a volunteer in a hospice
setting and what meaning does this have for
individual hospice volunteers?

Purpose
Develop health care professionals’
awareness of the experiences of hospice
volunteers and team working
Studies of hospice volunteers
General
reports of
activities
effects
role
Quantitative
3
2
0
2
Qualitative
0
0
2
1
No
methodology
7
6
11
0
concerns
motivation
education
Hospice volunteers
valued self-realisation and personal growth
as their motivation to volunteer
 may have specific motivation (personal
experience of a disease/the death of a loved)
 Positive encounters with a hospice are
related to personal growth
 The significance of hospice volunteers still
not recognised widely in Japan
 There were concerns about recruitment,
training and communication

Methodology
<My perspective>
 Epistemological
constructivism
 Interpretivism
<Research aim>
 To explore ‘the meaning’
of ‘the experience’ of
hospice volunteers
Qualitative research
Phenomenology
Hermeneutical phenomenology
Sampling
11 people from 2 hospices in 2 hospitals
•
•
Non-probability
Purposive
<Inclusion Criteria>
• Be registered
• Age from 18 to 65 years old
• Be involved in voluntary activities in the
hospice setting on a regular basis
– at least 1/week, more than 6 months
Data collection
 In-depth,
unstructured, one-to-one
interviews (in a quiet room, up to
an hour)
 Field notes
Data analysis
 Van
Mannen’s (1990) approach
①Holistic approach
②Selective approach
③Detailed approach
Characteristics
A hospice
B hospice
Back ground
Ecclesiastical
Public
History of the
hospice
27 years
1 years
Number of beds
21 beds
20 beds
Average length of
hospitalisation
18 days
>30 days
When volunteers
introduced
27 years ago
1 years ago
Number of volunteers
(Woman/Man)
19 (19 / 0)
21 (21 / 0)
Age range of
volunteers
41 -71 years old
49 – 68 years old
Process before
starting volunteer
work in the hospice
Training in a supply room
Working in a general ward
Moving to the hospice after
receiving an interview
Directly applying as a
hospice volunteer
Receiving interviews
3 days training
No.
Age
Length
working
hospital
Length
working
hospice
Employed
previous
volunteer
experiences
Living
with
Presence
of
Religious
A1
47
3 (m)
14
housewife
〇
Family
×
A2
56
1.5 (y)
5.5
housewife
×
Family
×
A3
71
3 (y)
27
housewife
×
Family
Christian
A4
59
1 (y)
4
Self employed
〇
Family
×
A5
52
3 (y)
3
housewife
×
Family
×
A6
41
7 (m)
1.3
Part-time
〇
Family
Buddhist
B7
61
0
1
〇
Family
×
B8
61
0
1
Retired /
housewife
Retired /
housewife
〇
Family
×
B9
49
0
1
housewife
×
Family
×
B10
50
0
1
Full-time
×
Alone
×
B11
62
0
1
housewife
〇
Family
×
Being in the journey
-Making adaptations
-Meeting challenges
The beginning of
-Belonging to a team
the journey
-Feeling good
-Becoming a hospice
volunteer
-Making a difference to
personal life
-Feeling of anxiety
Continuing the
journey
and stress
-Retaining motivation
-Feeling ‘privilege’ of
being the volunteer
-Enhancing palliative care
as a volunteer
Before the journey
-Having core attitudes
-Having core motivation
-Having a good environment for volunteering
-Deciding on the choice of hospice
-Intention to continue the
volunteering
-Having meaning of being
a hospice volunteer
Before the journey
Positive attitude
to volunteering
Having belief
Having Core
Attitudes
Trying casually
Wanting to be useful
“I didn’t expect to continue long (B11)”
Having personal
interests
“I want to read to patients(B11)”
Having an interest
in hospices
Having a good
environment for
volunteering
Support
Timing
Having personal
life event
Having Core
Motivation
“I had always wanted to give
what I could in return (A4)”
Good
conditions
“convenience to commune”
Getting know the
particular place
Deciding on choice of
hospice
The beginning of the journey
Being placed at
the hospice
Becoming a
hospice
volunteer
Feeling anxious of
the first experiences
Feeling stress to the
nature and contents
of works
Feeling
anxiety and
stress
“I often felt uncomfortable,
because many patients passed
away” (B7)
Having a sense
of obligation
Retaining
motivation
Being pleased to
become a hospice
volunteer
Feeling stress about
acceptance of
volunteers
“Probably some nurses felt as
though we were invading their
territory “(B9)
Being
supported
“I felt the hospice was more rewarding
than the ward…I was struck by the
very warm welcome given from the
nursing staff.” (A5)
Being in the journey
To role as
a volunteer
Challenges of
relationships
Making
adaptations
Meeting
Challenges
Challenges of
personal-life
Belonging to a
team
By sharing sufficient
information
By supporting
systems
To work
Challenges of the
interaction with
patients
“when a patient mentioned
about their disease, I feel
frustrated that I can’t find any
words to say to them” (A2)
By good
relationship
with nurses
By making a difference
to patients’ QOL
“I don't have to be thanked
but I'm just happy to see their
smiles, enjoying them”
Many things
added up
By making a difference in the
relationship with patients
Feeling good
Being useful to
patients
Making a difference in
the social relationships
Gaining sense
of fulfillment
Obtaining
emotional
reward
‘Reset’ herself
Learning from
others
Making a difference
to personal life
Personal growth
Learning the way of
living and dying
“I receive many things from
patients…My heart gets
nourished…I've grown as a
person” (B9)
Continuing the journey
Thankful to have the
opportunity of being
a volunteer
“I was impressed even though she was
suffering herself, she was considerate
towards her son and others…Such
moments make me think it's a privilege
for me to work here” (A5)
Motivation to improve
as a volunteer
Enhancing
human resource
Feeling ‘privilege’
of being a
volunteer
Enhancing
palliative care as
a volunteer
Enhancing
team work
“It would be great, if doctors and
nurses could better understand
about volunteering” (A3).
Enhancing hospice volunteering
in the community
Continuing the journey 2
Intention to
continue the
volunteering
Planning to
continue
“I want continue as
long as I can” (A2, B7)
Life work
Planning to
retire
“I’m almost 72 years old,
so it is hard physically” (A3)
The meaning of
being a hospice
volunteer
Purpose in life
beyond themselves
Personal
growth
“The meaning of being a volunteer is a
bit like something I live for, worthwhile.
It sort of adds something to my life” (A5)
Implications for practice
Providing initial training
 Offering sufficient explanations
 Presenting the the principle roles and
responsibilities of hospice volunteers
 Encouraging communication in a team
 Giving feedback
 Offering a chance to reflect on hospice
volunteers’ work

Limitations of the study
Limitation to generalise the results
- sufficient background information was
given

The effects of translation into English
Japanese transcript was used for the major
part of data analysis
- tried to deepen understanding the context
- checked by a Japanese translator and a
British colleague

Recommendations for further research
A national scoping exercise
 Surveys of both volunteers and health
care professionals about their
perception of hospice volunteers,
including the role and boundary of their
work
 A case-control study focusing on the
relationship between facilities for
volunteers and the stress of volunteers
 Using grounded theory approach

Thank you for listening!!
Any questions?
Ethical considerations
 Approved
by the Faculty Health and
Medical Science Ethics Committee,
University of Surrey
 Autonomy of participants
 Provided sufficient information
 Received informed consent forms
 Anonymised by using a code
 The data will be stored for 10 years