Kingsnorth S, Gall C, Beayni S, Rigby P
Bloorview Research Institute, Toronto, Ontario, Canada.
Child Care Health Dev. 2011 Nov;37(6):833-40. doi: 10.1111/j.1365-2214.2011.01294.x.
This paper focuses on the introduction of parents as 'transition experts' within a paediatric rehabilitation hospital. Through the personal experience of raising a young adult with special healthcare needs, Family Facilitators are knowledgeable about the processes of social and healthcare service transfer and transition to adulthood. Following a needs assessment, a pilot transition support group was established for parents of youth who were eligible for augmentative communication support. The goal was to provide informational, emotional and affirmational support during this stressful period. This study examined the impact of the Family Facilitator-led Transition Peer Support Group on parents' knowledge, skill and level of support in planning for the future.
Qualitative methods were used to explore benefits, limitations and outcomes of the parent support group. In addition to a review of 10 narrative field notes maintained for each session by the Family Facilitator and four session feedback forms, a 90-min focus group was conducted with eight core members.
Qualitative examination of the data revealed three themes: (i) increased awareness related to personal challenges in planning and shifting viewpoints on future orientation; (ii) increased active planning with regard to knowledge building and actions taken; and (iii) the value of experiential knowledge.
Parents reported gaining new knowledge and became more active and future-oriented in their planning. Further, they strongly valued the facilitator role and benefited from the social support provided by the group. Findings provide a unique snapshot of parental needs. Individualized support with an emphasis on citizenship, participation and inclusion were targeted topics. Future work should continue to explore optimal mechanisms for the provision of parent-focused transition support and the inclusion of parents as experts within healthcare settings.
本文着重介绍在一家儿科康复医院中，将家长作为“过渡专家”的情况。通过抚养一名有特殊医疗需求的年轻人的个人经历，家庭协调员了解社会和医疗服务转移以及向成年过渡的过程。在进行需求评估后，为有资格获得辅助沟通支持的青少年的家长设立了一个过渡支持试点小组。目标是在这个压力较大的时期提供信息、情感和肯定性支持。本研究考察了由家庭协调员主导的过渡同伴支持小组对家长在规划未来方面的知识、技能和支持水平的影响。
采用定性方法探讨家长支持小组的益处、局限性和成果。除了审查家庭协调员为每一次会议保留的10篇叙述性实地记录和4份会议反馈表外，还与8名核心成员进行了一次90分钟的焦点小组讨论。
对数据的定性分析揭示了三个主题：（i）在规划方面对个人挑战的认识增加，以及对未来取向的观点转变；（ii）在知识积累和采取行动方面积极规划增加；（iii）经验知识的价值。
家长报告称获得了新知识，在规划中变得更加积极且更具未来导向性。此外，他们高度重视协调员的角色，并从小组提供的社会支持中受益。研究结果提供了家长需求的独特概况。以公民身份、参与和融入为重点的个性化支持是目标主题。未来的工作应继续探索提供以家长为中心的过渡支持的最佳机制，以及将家长纳入医疗环境中作为专家的方式。
