Ritschl Valentin, Stamm Tanja, Selzer Axana, Boesendorfer Anna, Eibensteiner Fabian, Kaltenegger Lukas, Mosor Erika, Omara Maisa, Vachuda Natalie, Sperl Lisa, Masel Eva K, Aufricht Christoph, Boehm Michael
Institute for Outcomes Research, Centre for Medical Data Science, Medical University of Vienna, Wien, Austria.
Ludwig Boltzmann Institute for Arthritis and Rehabilitation, Vienna, Austria.
Arch Dis Child. 2024 Feb 19;109(3):240-246. doi: 10.1136/archdischild-2023-326432.
The objective of this study was to analyse the narrative life stories of children with end-stage kidney disease (ESKD) and their families to determine how health professionals can effectively support these children to achieve better life outcomes.
Qualitative narrative biographic study.
We invited every long-term survivor of paediatric kidney transplants and their families at the Medical University of Vienna between 2008 and 2013 to participate in this study.
Nineteen patients (women: n=8, 42%) and 34 family members (women: n=22, 65%) were interviewed. The patients had a mean age of 7.6 (SD±5.6) years at the time of transplantation and 22.2 (SD±5.4) at the time of interview.
A qualitative narrative biographical analysis was combined with computational structured topic models using the Latent Dirichlet Allocation.
The overarching finding was the desire for normality in daily life in long-term survivors and their families but with different perceptions of what normality looks like and predominance of this aspect evolving. Different strategies were used by patients (focused on their advancement) and caregivers (normality for all family members). Siblings played a major role in supporting survivors' social inclusion.
The strong desire for normality confirms recent findings of the Standardised Outcomes in Nephrology Group initiative, which proposes survival and life participation as core outcomes in children with chronic kidney disease. Our study should be a starting point for an international effort to identify typologies and stratified interventions for children with ESKD and their families, particularly siblings.
本研究旨在分析终末期肾病（ESKD）患儿及其家庭的生活叙事，以确定医疗保健专业人员如何有效支持这些患儿，使其获得更好的生活结局。
定性叙事传记研究。
我们邀请了2008年至2013年间维也纳医科大学儿科肾移植的每一位长期存活者及其家人参与本研究。
对19名患者（女性：n = 8，42%）和34名家庭成员（女性：n = 22，65%）进行了访谈。患者移植时的平均年龄为7.6（标准差±5.6）岁，访谈时为22.2（标准差±5.4）岁。
采用潜在狄利克雷分配法，将定性叙事传记分析与计算结构化主题模型相结合。
总体发现是，长期存活者及其家人渴望日常生活正常，但对正常的样子有不同的认知，且这方面的主导地位在不断演变。患者（专注于自身进步）和照顾者（关注所有家庭成员的正常生活）采用了不同的策略。兄弟姐妹在支持存活者融入社会方面发挥了重要作用。
对正常生活的强烈渴望证实了肾脏病标准化结局研究组倡议的最新发现，该倡议提出将生存和生活参与作为慢性肾病患儿的核心结局。我们的研究应成为一项国际努力的起点，以确定针对ESKD患儿及其家庭，特别是兄弟姐妹的类型和分层干预措施。
