患有普瑞德-威利综合症的拉丁裔家庭:探索对支持的需求。

Carina Chaij, Meekyung Han, Lisa Graziano
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引用次数: 8

摘要

普瑞德-威利综合征(PWS)是一种复杂的遗传性疾病;照顾一个有残疾的家庭成员,例如PWS,对整个家庭来说都是巨大的挑战。然而,没有研究集中于PWS对拉丁裔家庭动态的影响。本定性研究探讨了拉丁裔PWS儿童家庭面临的挑战和对支持服务的需求。研究结果表明,需要针对整个家庭单位的支持服务,以帮助成员应对家中的日常挑战。
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Latino families with a child with Prader-Willi syndrome: exploring needs for support.

Prader-Willi syndrome (PWS) is a complex, genetically based disorder; caring for a family member with a disability such as PWS brings significant challenges to the whole family. However, no research has been conducted focusing on the impact of PWS in the dynamics of Latino families. This qualitative study explored the challenges and need for support services among Latino families of children with PWS. Findings of the study suggest the need for support services geared toward the whole family unit to help members cope with daily challenges at home.

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