Experiences and barriers to Health-Related Quality of Life following liver transplantation: a qualitative analysis of the perspectives of pediatric patients and their parents

Abstract

This paper examines health-related quality of life (HRQOL) experiences and barriers facing young people who have received a liver transplant (LT). Semi-structured qualitative interviews were conducted with children and adolescents who have undergone LT and their parents. Findings indicate that LT fosters substantially improved child and adolescent HRQOL; however, young people also experience challenges such as difficulties with medication compliance, self-management of care routines, physical activity restrictions, and undesirable medical procedures. Implications and recommendations for clinical practice and research are discussed.

Physical activity and aerobic fitness in children after liver transplantation

“…No differences were found between child and parent report on HRQOL in our study, other studies report a moderate ability of caregivers to report on behalf of their children, and it is suggested to gain insight in both the perspective of the child and the parents . In a study interviewing both children after liver transplantation and their parents, it was found that children's perspective tended to relate to the present whereas parents reflected more to a future perspective . In the context of long‐term management of health benefits, children need to learn about the importance of a lifelong need for immunosuppression and about the benefits of PA. For health benefits, it is important to be physically active on all days of the week for at least one hour of MVPA.…”

“…44,46 In a study interviewing both children after liver transplantation and their parents, it was found that children's perspective tended to relate to the present whereas parents reflected more to a future perspective. 48 knowing that studies in gymnastics at school show that only 37% of the reported time is spent in MVPA. 23 One can imagine the same applies for activities reported during non-wear, but since no studies were available for other activities, we have chosen to correct these activities for the reported time.…”

Physical activity experiences in children post–liver transplant: Developing a foundation for rehabilitation interventions

“…The protective behavior may negatively influence their perspectives on PA, creating barriers to participation . Parental perceptions of their child's vulnerability have been negatively correlated with HRQOL, and PA restriction is described as a barrier to HRQOL in children PLT . Although children and parents in this study reported on the fear and/or risk of injury associated with participation in PA, especially high‐risk or contact sports, many participants described participation in PA as “normal.” It appears that the perception of “normal” participation may be reframed to include only sports and PA that are perceived to be safe, as none of the children reported participating in contact sports.…”

Health Status of Children Alive 10 Years after Pediatric Liver Transplantation Performed in the US and Canada: Report of the Studies of Pediatric Liver Transplantation Experience

“…This observation supports the concept that HRQOL does not consistently improve with increasing time from LT. Assessment of disease-specific aspects of HRQOL after pediatric transplantation has identified treatment anxiety and issues surrounding adherence with chronic medications as key factors impairing HRQOL. 26 These factors would not be expected to diminish over time; in fact, their impact may increase as pediatric LT survivors reach adolescence, even if their overall health status is essentially unchanged. Finally, school absences might be expected to become less common with increasing interval from LT, given the low risk of opportunistic infection and infrequency of medical visits.…”