Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.
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‘Legacy: Participatory Music Practices with Elderly People as a Resource for the Well-being of Healthcare Professionals’ was a qualitative research project into the learning and well-being of hospital nurses and nursing home caregivers working with vulnerable elderly people and participating in live music practices Meaningful Music in Healthcare (MiMiC) and Music and Dementia in the Netherlands.The data collection (2016-2019) employed an ethnographic approach and data triangulation of participant observation, episodic interviews and group discussions. The constructivist grounded theory approach to data analysis proceeded from sensitising concepts to initial and focused coding, ultimately reconstructed into a thick description merging empirical data, theory and the researcher’s interpretations. The emerging core categories, Participation, Experience and Learning Benefits, were conceptualised within an epistemological framework of philosophical pragmatism.The findings suggest that, through an emerging community of practice, healthcare professionals could collaborate with musicians to connect with patients or residents. The collaboration enabled the use of shared musical experiences as a resource for compassionate care. Still, allowing oneself to participate musically and showing emotional vulnerability were challenging. The accumulation of ‘experiencing’ and collegial encouragement supported healthcare professionals’ participation beyond their professional performance.Person-centred music-making resonated with the values of person-centred care. It enabled healthcare professionals to take time and become engaged with patients or residents in musical situations. Healthcare professionals described gaining new understandings of the patients or residents and each other, which could be seen promoting a cultural shift from task-centredness towards relationship-focused person-centred care.Musicians’ communication provided new professional insights into teamwork. Also, observing patients and residents’ responses to the music evoked sympathetic joy in healthcare professionals. Looking through the eyes of ‘the other’ was central for nurses and caregivers’ meaning-making of the value of music-making and awareness of its impact on patients, residents and themselves. The perceived benefits of the music practices for healthcare professionals’ job resources and satisfaction seemed connected to changes in care relationships, work atmosphere, sense of mindfulness and recognition.The conclusions of the research suggest that participatory music practices might be considered as supportive of delivering person-centred care. The findings could be applied in training programmes and professional development of musicians, nurses and caregivers.
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Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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