University of Surrey Faculty of Health and Medical Science MSc Health and Social Care

1. 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 MScHealth and Social Care AI KOBAYASHI 2012. 7. 9

2. 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

3. 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

4. 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

5. Studies of hospice volunteers

6. 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

7. Methodology <My perspective> • Epistemological constructivism • Interpretivism <Research aim> • To explore ‘the meaning’ of ‘the experience’ of hospice volunteers Qualitative research Phenomenology Hermeneutical phenomenology

8. 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

9. 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

13. Before the journey Having Core Attitudes Positive attitude to volunteering Trying casually “I didn’t expect to continue long (B11)” Having belief Wanting to be useful “I want to read to patients(B11)” “I had always wanted to give what I could in return (A4)” Having personal interests Having an interest in hospices Having Core Motivation Getting know the particular place Good conditions Timing Having a good environment for volunteering Having personal life event “convenience to commune” Deciding on choice of hospice Support

14. The beginning of the journey Becoming a hospice volunteer Being placed at the hospice Being pleased to become a hospice volunteer Feeling anxious of the first experiences Feeling stress to the nature and contents of works Feeling anxiety and stress “Probably some nurses felt as though we were invading their territory “(B9) “I often felt uncomfortable, because many patients passed away” (B7) Being supported Retaining motivation Feeling stress about acceptance of volunteers “I felt the hospice was more rewarding than the ward…I was struck by the very warm welcome given from the nursing staff.” (A5) Having a sense of obligation

15. Being in the journey Making adaptations To role as a volunteer To work “when a patient mentioned about their disease, I feel frustrated that I can’t find any words to say to them” (A2) Challenges of relationships Challenges of personal-life Meeting Challenges By supporting systems Challenges of the interaction with patients Belonging to a team By good relationship with nurses By sharing sufficient information

16. 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” Feeling good Many things added up By making a difference in the relationship with patients Being useful to patients Gaining sense of fulfillment Obtaining emotional reward Making a difference in the social relationships Learning the way of living and dying Personal growth Learning from others Making a difference to personal life “I receive many things from patients…My heart gets nourished…I've grown as a person” (B9) ‘Reset’ herself

17. Continuing the journey Thankful to have the opportunity of being a volunteer Feeling ‘privilege’ 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) Enhancing human resource Enhancing team work Enhancing palliative care as a volunteer “It would be great, if doctors and nurses could better understand about volunteering” (A3). Motivation to improve as a volunteer Enhancing hospice volunteering in the community

18. Continuing the journey 2 “I want continue as long as I can” (A2, B7) “I’m almost 72 years old, so it is hard physically” (A3) Purpose in life beyond themselves Planning to retire Personal growth Life work Intention to continue the volunteering The meaning of being a hospice volunteer “The meaning of being a volunteer is a bit like something I live for, worthwhile. It sort of adds something to my life” (A5) Planning to continue

19. 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

20. 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

21. 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

22. Thank you for listening!! Any questions?

23. 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