Healthy children as stem cell donors to severely ill siblings : the experiences of donors, parents and health care professionals

Abstract

<p dir="ltr">Background: Advances in hematopoietic stem cell transplantation (HSCT) have expanded its application to a wider range of diseases in both adults and children and is a well- established treatment today. These advances have led to an increase in the number of transplantations and an increase in survival for children with cancer and hematological disorders. Finding an HLA-identical donor is crucial, and a biological sibling has a 25% likelihood of being a match.</p><p dir="ltr">Aim: The primary objective of this thesis is to expand empirical knowledge regarding the experiences of children and adolescents in Sweden who donate stem cells to their seriously ill siblings. To gain a comprehensive perspective, the study also examines the experiences of their parents, focusing on decision-making and ethical considerations in the donation process. Additionally, the research explores the challenges and perceptions of healthcare professionals involved in caring for these young donors and their families, particularly during the informed consent process, and the moral dilemmas they may encounter.</p><p dir="ltr">Methods: All four studies have a qualitative approach. Interviews have been conducted with children and adolescents, their parents and healthcare professionals at paediatric HSCT centers. The interviews of the healthcare professionals were preceded by observational studies of informational conversations with potential donors who are minors and their parents. The goal was to observe and interview at all HSCT centers in Sweden.</p><p dir="ltr">Result: Healthy siblings experience that to donate was the presumed choice when a sibling is ill. They were proud to help the sibling, but it was not a choice situation. They were primarily focusing on the ill sibling and the outcome and downplayed their own efforts and were in need of more understandable information and support through play and talks.</p><p dir="ltr">Parents lived with a threat of losing a child and an uncertain future but still had to managing family life amid the chaos. The parents did not experience dual loyalty at the time because they were completely focused on the cure for the ill child and had difficulty providing for the healthy children in the family. The healthcare staff tried to find practical solutions for the ethically difficult situation of obtaining good enough consent for the healthy child who is to donate stem cells. This takes place through child and proxy consent, but sometimes also pseudo-consent.</p><p dir="ltr">Conclusions: These findings highlight the importance of providing age-appropriate information, engaging in dialogue with the child and describing available treatment options. Such informed decision-making ensures that potential donors can make choices they can live with, regardless of the transplantation outcome for their sibling. Many parents did not express their conflicting feelings, as they lived under the constant threat of losing a child. They continued to struggle on, often hiding their conflicting loyalties, which were not mentioned in the interviews. Their primary focus remained on curing the child with a life-threatening disease, which made it obvious that the healthy child would donate stem cells. The main concern of health professionals was to find a pragmatic solution to an ethically challenging situation. They endeavoured to obtain informed consent from both the parents and the donated child, using methods such as child consent, proxy-consent or pseudo-consent. They tried to create an environment that favoured information sharing with the minor child and his/her parents.</p><h3>List of scientific papers</h3><p dir="ltr">I. <b>Rinaldo, C.</b>, Stenmarker, M., Frost, B. M., Øra, I., & Pergert, P. (2022). Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling. European Journal of Oncology Nursing. 58, 102147. <a href="https://doi.org/10.1016/j.ejon.2022.102147">https://doi.org/10.1016/j.ejon.2022.102147</a></p><p dir="ltr">II. <b>Rinaldo, C.</b>, Stenmarker, M., Øra, I., & Pergert, P. (2024). Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling. Journal of Pediatric Nursing. 77, e495-e502. <a href="https://doi.org/10.1016/j.pedn.2024.05.015">https://doi.org/10.1016/j.pedn.2024.05.015</a></p><p dir="ltr">III. <b>Rinaldo, C.</b>, Stenmarker, M., Øra, I., & Pergert, P. No conflicting loyalties in parents when their healthy child donates stem cells to a severely ill sibling: An interview study. Journal of Pediatric Hematology/Oncology Nursing. [Accepted]</p><p dir="ltr">IV.<b> </b><b>Rinaldo, C.</b>, Stenmarker, M., Øra, I., Pergert, P. (ND) Healthcare professionals' experiences of caring for children/adolescents who will donate stem cells to ill siblings - main concerns and potential dilemmas. [Manuscript]</p>