Institute of Nursing and Health Research, Ulster University, Belfast BT1 6DN, Northern Ireland, UK.
Positives Futures, Bangor BT20 5BE, Northern Ireland, UK.
Int J Environ Res Public Health. 2023 Feb 27;20(5):4205. doi: 10.3390/ijerph20054205.
Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.
家庭为中心的干预措施在儿科实践和公共卫生中早已得到提倡，但在有发育障碍的儿童中实施较少。此外，来自社会资源匮乏背景的家庭参与度较低。然而，有强有力的证据表明，这种干预措施对照顾者以及受影响的儿童都有好处。本研究源自一个支持服务，该服务位于爱尔兰的一个农村县，近 100 个有智力和发育障碍儿童的家庭参与了该服务。该研究采用定性研究方法，对 16 名曾参与该服务的家长进行了访谈，旨在深入了解家庭为中心的服务对他们有何价值。他们的回答中确定了以下主题，并通过两种方式进行了验证。所有家长都有机会通过自我完成的问卷来提供他们的看法，近 50%的家长做出了回应。此外，还通过个人访谈询问了为该项目转介家庭的 7 名卫生和社会保健工作人员的意见。出现的核心主题是服务对家庭参与的关注，出现了四个子主题：父母信心增强；孩子得到发展；建立社区联系；以及支持性的工作人员。这些见解应该有助于现有的卫生和社会保健服务更加以家庭为中心，并为满足即使在最富裕的国家中边缘化家庭的高度未满足的需求而开发新的支持服务提供信息。
