How does providing an oral history at the end
of life influence well-being of the individual
and the bereaved?
Dr Michelle Winslow, Sam Smith, University of Sheffield
Email: m.winslow@sheffield.ac.uk
Summary
The aim of the research is to assess the impact of recording an oral history with
palliative care patients, and to understand how the recording is received in
bereavement by family and friends. This is an unresearched area and the study will
provide vital academic information to support the future shape and direction of
Macmillan oral history services.
Background
This project seeks to understand how oral histories recorded with people in palliative
care are valued by participants, their family and supporters in bereavement. To
achieve this we will analyse an existing archive of oral histories recorded in palliative
care, conduct semi structured interviews and develop a questionnaire to learn about
perceptions of oral history in palliative care and bereavement.
Oral history records life experience of the participant through an interview, it captures
and preserves their voice, and interviewees become involved in the process of
producing their own life histories. A strong motivation for patients who record life
stories can be the opportunity to do so as a record for their families. Oral history as a
form of biography has advantages over written forms of narrative since it provides an
opportunity for participation across a range of abilities, to people who may not wish
to write but who can vocalise their stories.
Oral history has an important role with people diagnosed with a life-limiting disease.
At certain life stages many people feel the need to explore their own life-story and
draw meaning from it. Particularly significant is the process of remembering, which
has the capacity to reinforce identity at a time when life circumstances are rapidly
changing. A life history interview can also help patients feel appreciated as people,
and help practitioners to understand patients more fully and form closer
relationships.
This study will gather information on other services in the UK and use a mixed
methods approach, interviewing and surveying bereaved relatives who have used
the oral history service as well as individuals who are giving an oral history. Data will
be analysed using a framework approach.
This project will build on the work and experience of an oral history service in the
Sheffield Macmillan Unit for Palliative Care that began in 2007. This project runs
under the auspices of the Academic Unit of Supportive Care, University of Sheffield,
who are also working with Macmillan Cancer Support on an innovative project in the
north of England to pilot oral history services for patients in palliative care. The
proposed study will inform the development of current and future oral history
initiatives with patients and bereaved family and friends.
Why is this work important?
Macmillan recognises that support at the end of life is vital to move towards a “good”
death. We aim to support people in this stage and help them gain closure and
dignity. Due to the success of the service in Sheffield we want to develop a pilot
service using volunteers to create oral histories in a variety of settings. Providing an
evidence base will be essential in supporting this service to be taken forward.