目的:患有肛门直肠畸形(ARM)和先天性巨结肠病(HD)的患者即使在成年期也受到这些疾病的长期影响。我们的目标是探索物理,这些疾病对青少年和年轻人的社会和情感影响,以制定过渡护理的最佳做法。
方法:我们对在四个三级转诊中心接受手术的年龄≥11岁的ARM和HD患者进行了一对一的深入访谈。所有访谈都是录音和逐字转录的。我们分析了反复出现的主题的抄本,并收集数据直至达到数据饱和。三名研究人员使用主题分析方法独立编码主要主题的成绩单。
结果:我们在2022年10月至2023年4月期间采访了16名参与者(11名男性)。年龄从11岁到26岁不等。出现了五个主要主题:(1)个人影响(子主题:身体,情绪和心理健康,社会,School),(2)对家庭的影响,(3)对他们未来的看法(次主题:关系,职业,健康状况),(4)支持来源(子主题:家庭,同行,partner),和(5)过渡护理(次主题:关注,期望)。只有女性对未来的生育率表示担忧。
结论:这项研究强调了患有ARM和HD的青少年和年轻人所面临的不断发展的问题,特别是针对特定性别的问题。我们的发现可以为提供个性化护理的努力提供信息。
OBJECTIVE: Patients with anorectal malformation (ARM) and Hirschsprung\'s disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care.
METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach.
RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility.
CONCLUSIONS: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.