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青少年和家长对儿童有限生命状况短期服务的看法:一项定性研究。

Teenagers' and parents' views on a short-break service for children with life-limiting conditions: a qualitative study.

机构信息

School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.

出版信息

Palliat Med. 2012 Apr;26(3):257-67. doi: 10.1177/0269216311401947. Epub 2011 Apr 7.

Abstract

Few opportunities exist outside the home for children and teenagers with life-limiting conditions to have a break in a setting specifically designed and adequately staffed and resourced to meet their complex clinical, practical and emotional needs; until recently provision focused primarily on providing respite for parents/carers. Based on policy recommendations, a short-break service was established with the aim of working in partnership with families and voluntary and statutory agencies to provide a fun break for children and teenagers with life-limiting conditions and complement the range of services available. This qualitative study used interviews and focus groups to determine teenagers' and parents' views of the service. Three themes emerged: accessibility and communication; needs and boundaries; and shaping the service. Teenagers enjoyed regular planned residential breaks, access to skilled staff and bespoke facilities to support their needs, opportunities to meet others with life-limiting conditions and fun time away from home, thereby giving parents peace of mind, a regular planned break from care-giving, opportunities to meet other parents and to spend exclusive time with their other children. If specialist short-break services become part of the national range of services available, children and teenagers with life-limiting conditions and their parents and siblings could all benefit.

摘要

对于患有危及生命疾病的儿童和青少年来说,很少有机会在专门设计、人员配备充足且资源充足的环境中休息,以满足他们复杂的临床、实际和情感需求;直到最近,主要的服务重点还是为父母/照顾者提供临时照顾。根据政策建议,建立了一个短期休息服务,旨在与家庭以及志愿和法定机构合作,为患有危及生命疾病的儿童和青少年提供有趣的休息,并补充现有的各种服务。这项定性研究使用访谈和焦点小组来确定青少年和家长对该服务的看法。出现了三个主题:可及性和沟通;需求和界限;以及服务的塑造。青少年喜欢定期计划的住宿休息,能够接触到熟练的工作人员和定制的设施来满足他们的需求,有机会结识其他患有危及生命疾病的人,并享受离家的有趣时光,从而让父母安心,定期从照顾中获得休息,有机会结识其他父母,并与他们的其他孩子共度专属时光。如果专门的短期休息服务成为全国可用服务范围的一部分,那么患有危及生命疾病的儿童和青少年以及他们的父母和兄弟姐妹都将受益。

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