Dew Angela, Llewellyn Gwynnyth, Balandin Susan
Community Based Health Care and.
Disabil Rehabil. 2014;36(9):756-64. doi: 10.3109/09638288.2013.816786. Epub 2013 Jul 22.
Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings.
Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data.
Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs.
The life course approach indicated that siblings' growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other. Implications for Rehabilitation As adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support. Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for example, by supporting geographically distant siblings to keep in touch. Service providers have a role in supporting the person with a disability and their siblings to make plans for the future.
患有中度或重度脑瘫的成年人通常一生都需要家人和正规服务机构的大量支持。本研究旨在采用生命历程方法，探讨以往的生活经历如何影响40岁及以上的中度至重度脑瘫患者及其非残疾兄弟姐妹的晚年关系。
对12名患有中度至重度脑瘫的成年人及其16名非残疾兄弟姐妹进行了两次访谈，以探讨他们的关系。采用建构主义扎根理论方法对数据进行分析。
确定了四个在理解这些晚年兄弟姐妹关系中很重要的主题：分享童年经历、成年后的联系、父母角色的减弱以及支持需求的增加。
生命历程方法表明，兄弟姐妹一起成长对晚年情感亲密关系的发展和维持很重要。情感亲密和家庭义务是促使有或没有脑瘫的兄弟姐妹在成年后保持或重新建立联系的重要因素。晚年兄弟姐妹关系的维持取决于健康状况、距离远近以及相互保持联系的能力。对康复的启示随着重度脑瘫成年人寿命的延长，他们与非残疾兄弟姐妹的关系往往变得更加重要，尤其是当他们的父母可能不再能够提供支持时。服务提供者可以发挥作用，帮助有残疾和无残疾的老年兄弟姐妹维持和建立他们的关系，例如，支持住得远的兄弟姐妹保持联系。服务提供者可以在支持残疾人和他们的兄弟姐妹为未来制定计划方面发挥作用。
