Facilitating resilience: provider perspectives of moral experiences of seriously ill young people in the ecological system of paediatric palliative care

St. Hilaire, Andrea (2026) Facilitating resilience: provider perspectives of moral experiences of seriously ill young people in the ecological system of paediatric palliative care. PhD thesis, University of Glasgow.

Abstract

Background: This research explores providers’ understandings of the moral experiences of seriously ill young people (12-17yo) in the United States. Serious and life-shortening illnesses are unpredictable experiences that can impact the terrain of a young person’s life trajectory. Moral experiences can be understood as personal, subjective interpretations and understandings of a happening or event, which can be accompanied by moral emotions.

Objective: This work explores healthcare and social care providers’ familiarity with the concept of moral experience, and how the concept can have value in helping to support seriously ill young people.

Methods: Two phases were conducted in this research, with the results of the first phase serving as a baseline from which the second phase developed, utilizing an emergent design. The first phase included semi-structured interviews asking 13 healthcare and social care providers, an educator, and a bereaved parent (n=15) about what they had experienced regarding young people’s communication during serious illness. The second phase asked healthcare and social care providers (n=46) in semi-structured interviews and focus groups about their familiarity with the concept of moral experience, and for examples they had encountered of ill young people’s moral experiences.

Results: Findings from the first phase suggested that, according to respondents, ill young people want “normalcy” and to be known beyond their diagnoses, want their voices to be heard, and that they can encounter moral emotions. Findings from the second phase illustrated that respondents have witnessed an array of moral experiences with ill young people, including negative valences and concerns, positive valences and aspirations, and complexity with both valences, all connected with associated moral emotions.

Discussion: Within the interconnected ecological system of pediatric palliative care, negative moral experiences can be viewed as challenges, concerns, or tensions that can arise after a serious illness diagnosis, with positive moral experiences that can be understood as enrichment, aspirations, or lessened tensions. Providers can utilize approaches such as adapting, communication, and empowerment to enhance the ill young person’s capacity to achieve relevant positive elements. This increase in capacity can also be described as finding and obtaining resources in striving to resolve negative elements or tensions. Seeking to lessen or resolve negative moral experiences by securing elements for positive moral experiences, even with limitations imposed by illness, can be seen as resilience.

Conclusion: This research extends literature about ill young people’s moral experiences, illustrating how meanings are relationally produced in care, and how providers can help young people enhance abilities to handle challenges. Ill young people working through an array of moral valences towards a more positive valence can be seen as resilience, which extends an ecological systems perspective of moral experiences in pediatric palliative care. In practice, this understanding can serve as a resource to better help ill young people, families, and care providers navigate and make sense of a life-shortening illness.

• Item Type: Thesis (PhD)
• Qualification Level: Doctoral
• Subjects: H Social Sciences > H Social Sciences (General); R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
• Colleges/Schools: College of Social Sciences > School of Social & Environmental Sustainability
• Supervisor's Name: Krawczyk, Dr. Marian, Whitelaw, Dr. Alexander and Macdonald, Dr. Mary Ellen
• Date of Award: 2026
• Depositing User: Theses Team
• Unique ID: glathesis:2026-86103
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 14 Jul 2026 12:53
• Last Modified: 14 Jul 2026 12:53
• Thesis DOI: 10.5525/gla.thesis.86103
• URI: https://theses.gla.ac.uk/id/eprint/86103