Peeters Mariëlle A C, Hilberink Sander R, van Staa AnneLoes
Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands.
Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands Institute of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands.
J Pediatr Rehabil Med. 2014;7(1):33-42. doi: 10.3233/PRM-140272.
To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents.
Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15-22 years) and one of their parents (n=16), asking about the young persons' daily lives and their development towards adulthood. Themes were deductively derived from the Skills for Growing Up framework, i.e. agency, living and daily activities, social and intimate relationships, education, work, leisure activities, transportation, and healthcare. Parents also reflected on how they dealt with the child's chronic condition. A paired thematic analysis was conducted.
Parents were often less convinced that their children could act independently than the young persons themselves. They were concerned about them and tended to interfere with their daily lives, often to the annoyance of their children. Also, parents often perceived more barriers in social participation, while young persons were more positive.
The perceptions of young persons and their parents clashed on living independently, intimate relationships, leisure activities, and healthcare. Young people might benefit from professional support in these domains to help them strengthen their autonomy and to prevent child-parent conflict and negative outcomes.
通过比较患有慢性病的年轻人与其父母的生活经历，深入了解他们走向独立的发展过程。
对16名年轻人（7名男性，9名女性；年龄在15至22岁之间）及其父母中的一方（共16人）进行了半结构化访谈，询问年轻人的日常生活以及他们向成年期的发展情况。主题是从“成长技能”框架中演绎得出的，即能动性、生活与日常活动、社会与亲密关系、教育、工作、休闲活动、交通和医疗保健。父母们还反思了他们如何应对孩子的慢性病。进行了配对主题分析。
与年轻人自己相比，父母往往不太相信他们的孩子能够独立行动。他们担心孩子，往往会干涉他们的日常生活，这常常让孩子感到烦恼。此外，父母往往察觉到社会参与方面存在更多障碍，而年轻人则更为积极。
年轻人及其父母在独立生活、亲密关系、休闲活动和医疗保健方面的看法存在冲突。年轻人在这些领域可能会受益于专业支持，以帮助他们增强自主性，防止亲子冲突和负面结果。
