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The Physical and Psychosocial Adaptation Experiences of Youths Diagnosed with Biliary Atresia and Treated Using the
Chi-Hua Lin1,2,3, Tzu-Ying Lee1,2,3, Ching-Yi Lai1,2,3
1About the authors: Chi-Hua Lin, MSN, RN, School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan.
Insights
Young adults with biliary atresia (BA) manage their health by controlling diet and mindset. They face long-term challenges but can thrive with tailored healthcare support.
Area of Science:
- Hepatology
- Pediatric Gastroenterology
- Qualitative Health Research
Background:
- Biliary atresia (BA) is a severe liver disease requiring early surgical intervention (Kasai procedure).
- Improved medical care allows BA patients to survive into adolescence and adulthood.
- Long-term prognosis is influenced by factors like nutrition, portal hypertension, and splenomegaly.
Purpose of the Study:
- To explore the lived experiences and adaptation strategies of adolescents and young adults with biliary atresia.
- To identify concerns and challenges faced by this growing patient population as they age.
Main Methods:
- Qualitative descriptive study utilizing purposive sampling.
- In-depth semi-structured interviews conducted with 13 patients aged 16-24 years in Taiwan.
- Inductive qualitative content analysis to identify key themes in participants' life experiences.
Main Results:
- Three major themes emerged: responsibility for dietary management, psychological adjustment to chronic illness, and navigating long-term health challenges.
- Participants demonstrated resilience in managing their condition and adapting to its lifelong implications.
- The study highlights the unique developmental and psychosocial needs of aging individuals with BA.
Conclusions:
- Healthcare providers should offer tailored support for self-care, psychological adjustment, and future planning for young adults with BA.
- Addressing developmental needs during follow-ups is crucial for improving quality of life.
- Empowering patients with information and support fosters better long-term outcomes and life planning.
Abstract:
Biliary atresia (BA) is a disease of the liver and bile ducts. Newborns with BA must undergo the Kasai procedure immediately after birth to survive. Postoperative nutrition, portal hypertension, and splenomegaly affect prognosis on an ongoing basis. With recent advancements in medicine and health care quality, children treated for BA can survive into adolescence and even early adulthood. This qualitative descriptive study explores how these youths have adapted, and their concerns as they continue to age. A total of 13 patients with BA aged 16-24 years were recruited using purposive sampling at a gastroenterology outpatient clinic in northern Taiwan. In-depth semi-structured interviews were conducted with each participant. The participants' life experiences were extracted into three themes via inductive qualitative content analysis: (1) being responsible for one's dietary regimen, (2) adjusting one's mindset about the illness, and (3) facing long-term challenges. Healthcare professionals can provide care recommendations tailored to the developmental needs of this patient group during regular follow-ups, assist them with self-care management and with accepting their uniqueness, provide information, and discuss their future careers and family plans.
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