The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme.

BACKGROUND: A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role. Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants' experiences, perceptions and motivations. METHOD: The wider study was structured into three phases. Phase 1 was the delivery of a 12 week, bespoke training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation which would inform the further development of the training programme. Self-reflection is a common component of End of Life training programmes and volunteers in this study completed a reflective diary after participation in each of the training sessions. A thematic analysis was undertaken to explore and understand the participants' experience, perceptions and motivations in relation to their participation in the training. RESULTS: All 19 volunteers completed the reflective diaries. From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). The following key themes were identified: Dying Alone and the importance of being present, Personal loss and the reconstruction of meaning, Self-Awareness and Personal growth, Self-preservation and Coping strategies and group unity/cohesion. CONCLUSIONS: The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role.

The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

OBJECTIVE: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. METHOD: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. RESULTS: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. SIGNIFICANCE OF RESULTS: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.

BACKGROUND: As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. AIM: To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales. DESIGN: Postbereavement survey to next-of-kin (NOK). SETTING/PARTICIPANTS: 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later. RESULTS: 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity. CONCLUSIONS: 'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.