PDF(Pubmed)
Abstract：
OBJECTIVE: Retinoblastoma (Rb) is a rare childhood eye cancer, with 45% of individuals impacted by heritable disease and the remainder impacted non-heritably. The condition can leave survivors with life-long psychological and social challenges. This qualitative study examined the psychosocial needs of teenagers and young adults living beyond Rb.
METHODS: A qualitative, exploratory study was conducted using focus groups with teenagers and interviews with young adults. Participants were recruited via the Childhood Eye Cancer Trust and the two national Rb treatment centres in the UK. Reflexive thematic analysis was used to analyse data using exploratory and inductive methods.
METHODS: 32 young survivors of Rb (10 heritable, 21 non-heritable, 1 unknown; 23 unilateral, 9 bilateral) aged between 13 and 29 years (12 male, 20 female).
RESULTS: Data were rich and spanned the life course: three key themes were generated, containing eight subthemes. Theme 1 describes participants\' experiences of childhood and trauma, including survivor guilt, memories from treatment and impact on personality. Theme 2 focuses on the challenges of adolescence, including the psychological impact of Rb, the impact on identity, and the sense of normality and adaptation to late effects. The third theme considered adulthood and the development of acceptance, a state of being widely considered unachievable during childhood, as well as the \'work\' needed to feel supported, including seeking out information, peer support and therapeutic strategies.
CONCLUSIONS: This study provides in-depth insight into the experiences of life beyond Rb. Findings highlight the need for specific psychosocial interventions informed by codesign.
METHODS: A qualitative, exploratory study was conducted using focus groups with teenagers and interviews with young adults. Participants were recruited via the Childhood Eye Cancer Trust and the two national Rb treatment centres in the UK. Reflexive thematic analysis was used to analyse data using exploratory and inductive methods.
METHODS: 32 young survivors of Rb (10 heritable, 21 non-heritable, 1 unknown; 23 unilateral, 9 bilateral) aged between 13 and 29 years (12 male, 20 female).
RESULTS: Data were rich and spanned the life course: three key themes were generated, containing eight subthemes. Theme 1 describes participants\' experiences of childhood and trauma, including survivor guilt, memories from treatment and impact on personality. Theme 2 focuses on the challenges of adolescence, including the psychological impact of Rb, the impact on identity, and the sense of normality and adaptation to late effects. The third theme considered adulthood and the development of acceptance, a state of being widely considered unachievable during childhood, as well as the \'work\' needed to feel supported, including seeking out information, peer support and therapeutic strategies.
CONCLUSIONS: This study provides in-depth insight into the experiences of life beyond Rb. Findings highlight the need for specific psychosocial interventions informed by codesign.
摘要：
目的：视网膜母细胞瘤（Rb）是一种罕见的儿童眼癌，45%的个体受到遗传性疾病的影响，其余的受到非遗传影响。这种情况可能会给幸存者带来终身的心理和社会挑战。这项定性研究调查了生活在Rb以外的青少年和年轻人的心理社会需求。
方法：定性，探索性研究采用青少年焦点小组和青少年访谈进行.参与者是通过儿童眼癌信托基金和英国的两个国家Rb治疗中心招募的。使用探索性和归纳性方法对数据进行自反性主题分析。
方法：32名Rb的年轻幸存者（10名可遗传，21不可遗传，1个不明；23个单边，9双侧）年龄在13至29岁之间（男性12，20女）。
结果：数据丰富，跨越生命历程：产生了三个关键主题，包含八个子主题。主题1描述了参与者的童年和创伤的经历，包括幸存者的负罪感,治疗记忆和对人格的影响。主题2关注青春期的挑战，包括Rb的心理影响，对身份的影响，以及对后期影响的常态感和适应能力。第三个主题考虑了成年和接受的发展，一种被广泛认为在童年时期无法实现的状态，以及需要得到支持的“工作”，包括寻找信息，同伴支持和治疗策略。
结论：这项研究提供了深入了解Rb以外的生活经历。研究结果强调了由codesign提供的特定心理社会干预措施的必要性。
方法：定性，探索性研究采用青少年焦点小组和青少年访谈进行.参与者是通过儿童眼癌信托基金和英国的两个国家Rb治疗中心招募的。使用探索性和归纳性方法对数据进行自反性主题分析。
方法：32名Rb的年轻幸存者（10名可遗传，21不可遗传，1个不明；23个单边，9双侧）年龄在13至29岁之间（男性12，20女）。
结果：数据丰富，跨越生命历程：产生了三个关键主题，包含八个子主题。主题1描述了参与者的童年和创伤的经历，包括幸存者的负罪感,治疗记忆和对人格的影响。主题2关注青春期的挑战，包括Rb的心理影响，对身份的影响，以及对后期影响的常态感和适应能力。第三个主题考虑了成年和接受的发展，一种被广泛认为在童年时期无法实现的状态，以及需要得到支持的“工作”，包括寻找信息，同伴支持和治疗策略。
结论：这项研究提供了深入了解Rb以外的生活经历。研究结果强调了由codesign提供的特定心理社会干预措施的必要性。
