Empowering pediatric sibling hematopoietic stem cell donor voices through digital storytelling

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dc.contributor.authorWinther Klippenstein, Andrea Diane
dc.contributor.examiningcommitteeMignone, Javier (Community Health Sciences)
dc.contributor.examiningcommitteeScott, Shannon (Nursing)
dc.contributor.examiningcommitteeCarter, Bernie (Edgehill University)
dc.contributor.supervisorWest, Christina
dc.date.accessioned2025-06-20T17:50:19Z
dc.date.available2025-06-20T17:50:19Z
dc.date.issued2025-06-20
dc.date.submitted2025-06-20T17:02:51Zen_US
dc.degree.disciplineInterdisciplinary Program
dc.degree.levelDoctor of Philosophy (Ph.D.)
dc.description.abstractThis participatory, arts-based qualitative study aimed to elucidate the sibling donor experience in pediatric hematopoietic stem cell transplant (HSCT). Six sibling donors aged 12-21 years of age who were under 18 at time of donation, participated as research partners and used digital storytelling (DS) to express their donation experiences. The United Nations Convention on the Rights of the Child (UNCRC) was employed as a framework to ensure that research partners' voices were heard. Research partners were actively involved in three research meetings (get to know you, digital storytelling workshop, data analysis), collaborating and contributing to the meeting dynamics while offering feedback on the participatory process and the creation of digital stories. During meeting three (data analysis), research partners viewed each other's digital stories and wrote words, thoughts, and ideas on Post-it notes to reflect their interpretations of the sibling donor experience. The primary researcher (AWK) conducted participatory data analysis with sibling donor research partners and six themes were identified and explored: 1) pessimism and acceptance, 2) after-procedure thoughts, 3) sibling support, 4) family experience, 5) connections, and 6) hope. Throughout the process, AWK and a secondary researcher (CHW, doctoral advisor) wrote field notes to capture the research process of using the digital storytelling method to empower pediatric sibling donors to express donation stories. Interpretive description was employed to analyze field notes and research partner meeting transcripts, leading to the identification of four themes: 1) community and connection; 2) digital storytelling - new and fresh; 3) therapeutic process; and 4) privacy. Digital storytelling is an arts-based approach that can assist sibling donors to express their donation experiences and offer support for growth and strength in the context of sibling donation and encourage children’s meaningful engagement and participation in research by exploring their HSCT donation experiences.
dc.description.noteOctober 2025
dc.description.sponsorshipManitoba Centre for Nursing and Health Research Red River College Polytech Faculty Tuition Reimbursement
dc.identifier.urihttp://hdl.handle.net/1993/39124
dc.language.isoeng
dc.subjectPediatric
dc.subjectYouth
dc.subjectHematopoietic stem cell donation
dc.subjectParticipatory research
dc.subjectDigital storytelling
dc.subjectChildren's rights
dc.titleEmpowering pediatric sibling hematopoietic stem cell donor voices through digital storytelling
local.subject.manitobayes
oaire.awardTitleRM/ CHRIM PhD Studentship
project.funder.nameResearch Manitoba and the Children's Hospital Research Insititute of Manitoba
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