Conference Agenda

Background: While there is a growing and compelling body of research on music, health and wellbeing, we still know very little about how and why people actually engage with artistic and creative media like music at the end of their life. Objectives: The international ethnography C4M - Care for Music addresses these questions by intentionally upending the standard perspective of researching what music does for/to dying people, and rather asks how, why and with what consequences people care for music at the end of their life. Hereby palliative music therapy is conceptualized as cultural practice adapted to specialist settings and the needs of the people therein. Rather than as clinical intervention, music is understood as a complex aesthetic and social phenomena that can only be fully grasped in-situ and in-action. Design and methods: From 2019-2023 we conducted an ethnography of people´s actual engagement with music at the end of their life. Overall, we used gentle methods, including the collection of field and observational notes, video- and audio-recordings of music therapy sessions, and reflexive interviews with participants across two hospices. In a participatory micro-analysis of the wide-ranging data material, researchers and participants engaged in a circular co-analysis, refining and defining findings collaboratively. Results: We collected and analyzed over 1000 hours of field observations, video- and audio- recordings of music therapy sessions. Through the participatory analysis, we found that dying people actively and resourcefully engage with and through preferred, biographically important music to care for themselves and for others, namely for their families. We will illustrate these findings with two case studies from the project including audio and visual material and discuss them with reference to the theoretical concepts of selfhood and existential health. Conclusions: Finally, referring to the title of the conference, we address the questions of what we can learn from dying people´s care for music, and how their capacity for engagement and agency in music therapy can invigorate broader societal discourse and awareness for the value of death and the recognition of dying people´s creative and relational resources in end-of-life care.

The notion of ambiguous loss is anchored in Pauline Boss’s family experience of immigration to the United States in 1929. In her theory, she notes there are two types of ambiguous loss: where there is a physical absence with psychological presence (such as a person who has been “disappeared”), and where there is a psychological absence with physical presence (such as dementia). This presentation will focus on the first type of ambiguous loss where there is physical absence with psychological presence: the physical loss of someone that may remain unverified and may be without resolution, but for which memories can serve as a psychological presence of the missing individual. The role of secondary losses, such as communities, patriotic identity, and assumptive world, will be considered.

Over 89 million people have been forcibly displaced as of 2021, including 36.5 million below age 18. All share a struggle with ambiguous grief and loss that is just beginning to be studied. For refugees, ambiguous loss is often characterized by hopes for refuge, longing for the past, and an endless sense of loss. This presentation will examine what one example of forced displacement looked like, and how refugee experiences can be conceptualized.

It will then turn to the stories of refugees, in particular Sudanese youth living in Michigan known as the Lost Boys, and their ways of coping with the ambiguous loss of living apart from families and culture. To survive and thrive, these youth drew on relationships with peers, the presence of elders as a created surrogate family structure, and the psychological presence of their parents through remembering life lessons.

Finally, tips for supporting refugee families will be discussed.

Background: Care cultures encompass a diversity of mindful caring attitudes and activities as well as social practices in families, teams, organizations, communities or the society as a whole. Many students entering nursing education encounter dying people for the first time during their first internships. They are not always well prepared for the emotional impact a death can have on them. The project aims to open up a space for them to share and reflect on their experiences through narratives.

Aim: The project aims at generating knowledge about cultures of care at the end of life and about dying as a multidimensional process with the participation of students and Citizen Scientists in an exchange between different age groups and different cultural groups, including the category of gender.

Research design and process: The participatory research project brings together nursing students and old people with and without dementia. They tell each other about their end-of-life experiences in storytelling cafés. The storytelling cafés take place in public organizations such as libraries and museums, but also in nursing homes. The Cafés are recorded and transcribed and we performed a narrative and a thematic analysis of the data.

Findings: At the present time, we have performed 13 storytelling cafés in different settings bringing together nursing students and older people with different cultural background. All participants engaged voluntarily in the narrative research. Those who did not want to tell acted as observers. The storytelling cafés made it clear that all participants, older people and students alike had (more or less) experience with dying, death and mourning, whether in their private or professional lives. The cafés offered an opportunity to share and reflect on the experiences in a trustful and empathic atmosphere. Doing gender is apparent in the storytelling cafés and needs to be facilitated. Telling a story about end of life to another generation is comforting and has a spiritual dimension. Cultural differences can be overcome in the storytelling café. Some ways to deal with death and dying are alike in India and in specific European regions. We have made good experiences with storytelling cafés about end of life as narrative group methods in palliative care.

Palliative Medicine, is a robust, competency based , accredited field of medicine whose very genesis was organic and gradually emergent just over the last 40 years. Despite the incredible contributions Palliative medicine has made to evidence based, person centred care for people approaching the end of life, attention to the community itself has often not been one if its pillars.

In this unique presentation, an academic physician and focused practice professor of palliative medicine nearing the end of her career, will participate in a frank dialogue-interview style-with a social media based influencer in public health palliative care. Together they will identify both the conscious and often unconscious drivers that influenced a generation of palliative medicine clinicians. Uncomfortable realities of how doctors are socialized and trained will be identified and the real, albeit unintended consequences of evidence based biomedical training in healthcare will be named.

This first person account will focus on the lived and learned experience of this leader in palliative care and how a mid/late career jolt enabled a humble pivot that helped reframe training and competencies in palliative medicine to "re-imbrace" community. Lessons learned and importantly, future directions will be highlighted.

Background

Experiences of bereaved members in home hospice care are crucial factors for creating compassionate communities (CCs); in our practice, community-based home hospice care in Fukuoka, Japan, we sometimes encounter personal transformations of the bereaved members through their experiences of the end of life (EoL) care of their loved ones, which could potentially have positive impacts on spreading CCs. Some of them become to play an important role in our CCs such as a volunteer member or a healthcare provider. However, few studies have investigated how the personal transformation of the bereaved members through home hospice care is.

Objective

The aim of this study is to explore the personal transformation of the bereaved members through an EoL care with a clinic providing community-based home hospice care.

Design and Methods

We carried out a qualitative descriptive study, a semi-structured interview from one bereaved member who has been started to work with one of the facilities of our CCs as a volunteer member after the EoL care for her mother with dementia at home.

Results

The identified categories related to the bereaved person's personal transformation include 'Enjoyment of sharing the senses with others through eating', 'Changes in relationship with family' and 'Self-reflection'. The caregiver cared for her mother with respecting her love of food and entertaining others. Shortly before her mother’s death, her mother, who hated to lose, told the caregiver, 'You beat me', which she took as a sign of acknowledgement of herself. However, the caregiver struggled with disagreements about her mother's care with family members who did not live with her. Self-reflection on her own care led her to obtain a qualification in care after her mother's death. She has now been involved in helping people with disabilities, valuing all five senses, and is grateful to have found a place where she was accepted, at a facility referred to her by the staff at the home hospice clinic.

Conclusion

The personal transformation of the caregiver through EoL care was consisted of the diverse changes such as self-reflection and reinforcement of values, based on experiences with people around her in her life. It can be said that the creation of diverse places and networks where bereaved members can connect at the right time and demonstrate their compassion is important for the spread of CCs in the future.