Fighting Imaginary Dragons and Battles with Arrow Snakes and Octopuses: an exploration of the experiences of children’s palliative care for forced migrant families and those who care for them

Clancy, Marie A. ORCID: 0000-0002-0076-5180 (2023). Fighting Imaginary Dragons and Battles with Arrow Snakes and Octopuses: an exploration of the experiences of children’s palliative care for forced migrant families and those who care for them. University of Birmingham. Ph.D.

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Abstract

Background - The aim of this study was to understand the care experiences of forced migrant families from both family and care provider perspectives, in hospital, hospice and community settings. Palliative care for children requires an active, holistic approach to care, with a focus upon improving quality of life. Children’s palliative care is complex and multifaceted, requiring multiple specialist and organisation involvement, yet there is limited research to guide practice. Even less is known about the experiences of forced migrant families who encounter a range of additional challenges including the loss of family, belongings, and all sources of familiarity and support. The difficulties of navigating complex bureaucratic systems can confound access and communication difficulties. With acknowledgement of such challenges, a systematic review was conducted which combined existing research from children’s palliative care and forced migration. The review highlighted the paucity of literature in this area.

Methodology- Underpinned by a constructivist research paradigm, the Silences Framework offered novel theoretical and philosophical concepts, which helped to situate and prioritise the ‘silences’ within the marginalised discourses of forced migration and palliative care. Interpretative Phenomenological Analysis methodology was used to privilege participant perspectives and apply an active in-depth cyclical process of reflection and reflexivity. Advisory group members provided expertise in childhood illness, palliative care and forced migration, throughout the study. Through purposive sampling 14 participants contributed to semi-structured interviews, alongside the use of creative research methods of ‘draw and talk’ to enhance participant expression. Following individual and cross-case analysis, advisory groups supported the creation of poetic accounts for each participant, alongside interpretative reflective discourse about participant meaning-making. This additional analysis added an extra lens in which to reflexively see, challenge and understand.

Findings - Aspects which optimised families’ experiences included compassionate, empathetic, family centred care which valued family belief systems and coping strategies. Two-way learning with and from families was described by all participants, which enhanced understanding and fostered mutual respect. However, barriers to quality care included poor access to services and resources, protocol-led care, limited time with families, communication barriers and staff burnout.

Conclusions – Empirical contributions of this study include the need for a specific educational pathway for health care professionals to include spiritual care provision, cultural humility, and moral reasoning. Interdisciplinary education including the use of lived expert by experience insights, and the arts are also advocated. Implications for future nursing practice include the prioritisation of additional time to build relationships, the importance of interpreter support and the need for better access to hospice care for forced migrant families. Methodological contributions include approaches for enhancing advisory group dialogue and the benefits of creative research methods. Poetry was particularly valuable as it offered a way to understand complex lived participant experience such as faith and healthcare decision making, and also a method for meaningful advisory group dialogue. As such suggestions for how all these aspects might be advanced are also outlined.

Type of Work:	Thesis (Doctorates > Ph.D.)
Award Type:	Doctorates > Ph.D.
Supervisor(s):	Supervisor(s) Email ORCID Taylor, Julie UNSPECIFIED orcid.org/0000-0002-7259-0906 Bradbury-Jones, Caroline UNSPECIFIED orcid.org/0000-0002-5237-6777 Phillimore, Jenny UNSPECIFIED orcid.org/0000-0003-1213-2302
Licence:	All rights reserved
College/Faculty:	Colleges (2008 onwards) > College of Medical & Dental Sciences
School or Department:	School of Nursing and Midwifery
Funders:	None/not applicable
Subjects:	R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services R Medicine > RT Nursing
URI:	http://etheses.bham.ac.uk/id/eprint/14173

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