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Background: Children with intestinal failure (IF) receiving long-term parenteral nutrition (PN) require significant medical care, including high-risk procedures such as accessing a central venous catheter, with the majority provided by family caregivers in the home. This study sought to understand the experiences of family caregivers.Methods: This was a qualitative study of family caregivers of children with IF.Participants were recruited from an intestinal rehabilitation program to participate in virtual focus groups, which were recorded and transcribed. Thematic analysis was used to capture and describe experiences.Results: Thirteen caregivers providing care to 11 children participated in three virtual focus groups held between May and June 2020. Data analysis revealed five primary themes: (1) caregiving as a 24/7 commitment, (2) facing constant risk of death, (3) chronic illness creates difficult feelings and emotions, (4) effects on all aspects of family life, and (5) adapting and functioning as a family. The findings of this study pair well with the biopsychosocial model highlighting the need for multifaceted assessment and supports. Conclusion:The impact of caring for a child with IF receiving long-term PN is significant for caregivers and their families and has implications for all aspects of their lives. A better understanding of the impact on caregivers and their coping strategies lays the groundwork for the optimization of quality of life for caregivers and their family.

Physical Activity (PA) plays an important role in the physical and psychosocial health of children and is beneficial in the treatment and prevention of comorbidities associated with transplantation. Despite this, PA participation in pediatric liver transplant recipients remains low compared to healthy peers. This qualitative-focused mixed-methods study explored the PA experiences and parental perception of these experiences, including perceived facilitators and barriers to PA in children post-liver transplant. Eighteen participants (9 children [median age 10.8 years] and 9 parents) took part in semi-structured interviews and completed the PedsQL Multidimensional Fatigue Scale and PAQ. Most children reported they were physically active (PAQ median 3.08 [IQR] 2.60-3.51), participating in PA for its enjoyment, regardless of their level of motor proficiency. Levels of fatigue (median 65.28 [IQR] 56.25-90.97) were higher than healthy norms and impacted PA participation in some children. Children and parents perceived PA as central to post-transplant recovery and valued its social and mental health benefits; however, parents struggled with ongoing uncertainty and perceived physical vulnerability of their child. This study indicates the need for continuing PA support and education and provides valuable information for family-centered interventions to increase PA and improve health outcomes in children post-transplant.

Solid organ transplantation is a life-saving therapy for patients with end-stage organ failure and survival rates continue to increase parallel to medical advancements. 1 Yet self-management of care following solid organ transplantation is demanding for patients, as protocols require adherence to immunosuppressive drug therapy, strict diet and exercise regimens, and life-long medical follow-up. 2,3

Background Anonymous living donor transplantation is a potential strategy to address the shortage of available organs for transplant. A living anonymous donor (LAD) is a donor with no biological connection and whose identity is unknown to the recipient. This study captured the lived experiences of pediatric liver transplant recipient families whose child received an organ from a LAD. Methods Qualitative data collection and analysis were guided by a theoretical framework of phenomenology. Data analysis highlighted themes through an inductive process of reviewing transcript paragraphs to code for significant statements that represented key concepts and captured depth of experience. Results A total of nine interviews were conducted with 10 participants. Data analysis yielded themes of emotional turbulence through their transplant journey. Pre‐transplant experiences were characterized by feelings of helplessness and desperation. Receiving a LAD transplant prompted shock, relief, and acceptance of the donation. Post‐transplant experiences were characterized by altered life‐perspectives and varied levels of connectedness to the donor, marked by gratitude and concern for donor well‐being. Conclusion Anonymous donation in liver transplantation is perceived by recipient families as a remarkable gift and a viable donor option. Our preliminary findings can be used to inform strategy development regarding future delivery of care.