Background: Parents supporting AYAs with blood cancer juggle dual, competing roles as cancer caregiver and parent, which may heighten distress as they feel pulled simultaneously in two opposing directions. Likewise, AYAs encounter paradoxical needs as they revert to being more dependent on their parents to prioritize their survival while their developmental trajectory toward independence is disrupted. Parents need help understanding the underlying tensions they face in caregiving to reduce their distress and promote their connectedness with their AYA. Using a dialectical lens, we identified tensions parents encountered while caregiving in three contexts (clinical, family, and online communication) to inform a targeted psychosocial intervention. Methods: In partnership with The Leukemia & Lymphoma Society, we recruited 20 parents for in-depth interviews. Parents cared for adolescents aged 15–18 (n= 10) or emerging adults aged 19–29 (n= 10) diagnosed >3 months prior and in active treatment or within 2 years since treatment ended. Transcripts were thematically analyzed. Results: Parents described four ongoing tensions they needed to negotiate as they cared for their AYA: (1)being the driver versus passenger in their child’s care; (2)coping with cancer together as a family versus separately; (3)deciding to reveal versus conceal information; and (4)expecting normative developmental and disease trajectories versus disrupted trajectories. These tensions characterize the complex caregiving “dance” parents navigate in all three care contexts. Conclusions: Psychosocial education can normalize these tensions for parents to promote healthier coping and reduce distress while enhancing connectedness with their AYA. As caregiver–patient outcomes are interrelated, it may improve AYAs’ well-being.
背景：青少年与年轻成人（AYA）血液肿瘤患者的父母需同时承担癌症照护者与家长的双重且相互冲突的角色，这种角色张力可能加剧其心理困扰，使其感受到来自两个对立方向的拉扯。与此同时，AYA群体也面临矛盾需求：一方面因疾病治疗需要回归对父母的依赖以保障生存，另一方面其向独立发展的成长轨迹却被疾病打断。为帮助父母理解照护过程中面临的内在张力、减轻心理困扰并促进与AYA子女的情感联结，本研究通过辩证视角识别父母在三种情境（临床诊疗、家庭生活、线上沟通）中面临的照护张力，以期为针对性社会心理干预提供依据。 方法：本研究与白血病和淋巴瘤协会合作，招募20名血液肿瘤患儿的父母进行深度访谈。受访父母照护的确诊时间超过3个月、正处于积极治疗期或治疗结束2年内的AYA子女，其中15-18岁青少年组10例，19-29岁初显成人组10例。访谈文本采用主题分析法进行编码分析。 结果：父母在照护过程中需要协调四组持续存在的张力：（1）在子女治疗中扮演主导者与从属者的角色冲突；（2）以家庭整体应对癌症与个体独立应对之间的平衡；（3）医疗信息告知与隐瞒的决策困境；（4）对正常发展轨迹/疾病进程的预期与现实中轨迹中断的认知冲突。这些张力共同构成了父母在三种照护情境中需要应对的复杂"照护之舞"。 结论：社会心理教育可通过帮助父母认识这些张力的普遍性，促进其采取更健康的应对方式、减轻心理困扰，同时增强与AYA子女的情感联结。鉴于照护者与患者的健康结局具有相互关联性，此类干预亦可能改善AYA群体的身心健康水平。
肿瘤(癌症)患者之家