Graaf Genevieve, Kitchens Katherine, Sweeney Millie, Thomas Kathleen C
School of Social Work, The University of Texas at Arlington, Arlington, USA.
Family-Run Executive Director Leadership Association, Turner, USA.
Adm Policy Ment Health. 2025 Mar;52(2):331-345. doi: 10.1007/s10488-024-01409-8. Epub 2024 Sep 13.
Patient-centered outcomes research helps youth and families using behavioral health services make informed decisions about treatments to help them achieve the outcomes most important to them. However, there are few efforts to identify the outcomes valued by youth and families systematically. This project aimed to support the development of behavioral health services that deliver outcomes valued by families by identifying the outcomes that youth and young adults with behavioral health needs and caregivers say matter most to them. We engaged 34 youth and young adults (YYA) with behavioral health needs, alongside 42 caregivers from six U.S. regions, in two rounds of one-hour virtual focus groups. The initial round involved participants identifying what they hoped to gain from using behavioral health services for personal, familial, and parental or child well-being and the attributes of positive service experiences. We coded responses using qualitative analytical software, culminating in synthesized reports. Subsequently, the second round entailed participants' review and refinement of initial findings. Across sessions, each group reported the top three outcomes deemed most important for children, YYA, parents, families, and their service experiences. YYA identified being understood by others, improving their interpersonal relationships, and feeling heard as the highest priority behavioral health service outcomes. Caregivers of children and youth with behavioral health needs identified having accessible services that meet their needs, having providers that collaborate effectively with parents and other service systems, and experiencing consistent and continuous behavioral health care for their child as the most important behavioral health service outcomes. Both YYA with behavioral health needs and caregivers of children and youth prioritized gaining the necessary knowledge, resources, and tools to support their or their child's behavioral health. Additionally, both participant groups emphasized the importance of effective communication with providers, within their families, and with peers. Minimizing judgment and stigma from society, providers, and other professionals also emerged as a critical outcome for these groups. It is essential for research and policy development to focus on and cater to the outcomes that are important and valued by YYA and their families to maximize family engagement in care.
以患者为中心的结果研究有助于使用行为健康服务的青少年及其家庭做出明智的治疗决策，以帮助他们实现对自己最重要的结果。然而，很少有人系统地努力去确定青少年及其家庭所重视的结果。本项目旨在通过确定有行为健康需求的青少年和年轻人以及照顾者认为对他们最重要的结果，来支持提供家庭所重视结果的行为健康服务的发展。我们让34名有行为健康需求的青少年和年轻人，以及来自美国六个地区的42名照顾者，参加了两轮一小时的虚拟焦点小组讨论。第一轮讨论让参与者确定他们希望通过使用行为健康服务在个人、家庭以及父母或子女福祉方面获得什么，以及积极服务体验的特征。我们使用定性分析软件对回答进行编码，最终形成综合报告。随后，第二轮讨论要求参与者对初步结果进行审查和完善。在各场讨论中，每个小组都报告了对儿童、青少年和年轻人、父母、家庭以及他们的服务体验而言最重要的三大结果。青少年和年轻人认为被他人理解、改善人际关系以及感到被倾听是行为健康服务的首要结果。有行为健康需求的儿童和青少年的照顾者认为，获得满足其需求的便捷服务、有能与父母及其他服务系统有效协作的提供者，以及让自己的孩子获得持续连贯的行为健康护理是行为健康服务最重要的结果。有行为健康需求的青少年和儿童及青少年的照顾者都将获取支持其自身或其子女行为健康所需的知识、资源和工具列为优先事项。此外，两个参与群体都强调了与提供者、家庭成员以及同龄人进行有效沟通的重要性。减少来自社会、提供者和其他专业人员的评判和污名化也成为这些群体的一项关键结果。研究和政策制定必须关注并满足青少年及其家庭所重视的重要结果，以最大限度地提高家庭对护理的参与度。
