Yoo Ahrang, Kim Monique, Ross Melissa M, Vaughn-Lee Angela, Butler Beverly, dosReis Susan
Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Arch Street, Baltimore, MD, 21201, USA.
Department of Psychiatry, University of Maryland School of Medicine, Baltimore, MD, USA.
J Behav Health Serv Res. 2018 Jul;45(3):440-453. doi: 10.1007/s11414-018-9604-0.
Caregivers of youth with coexisting cognitive and mental health problems face difficult treatment decisions for their child and have unique challenges engaging in shared decision-making. Many stakeholders can influence care management decisions, and the child's cognitive impairment often prohibits their inclusion in the shared decision-making process. In-depth interviews and focus groups with 37 caregivers elicited their experiences with care management related to their child's educational, mental health, and other care needs. Four themes that describe the process of engagement were awareness, activation, formulating a strategy, and action. Findings show psychoeducation, and peer-to-peer support could enhance caregivers' awareness of the condition and encourage activation, which would help in navigating complex service sectors. Coordinated services could enhance capabilities for formulating a strategy jointly with multiple providers and stakeholders. Ultimately, this would contribute to shared decision-making around a common treatment goal that hopefully leads to better quality of care in the least restrictive setting.
患有认知和心理健康问题的青少年的照顾者，在为其孩子做出治疗决策时面临困难，并且在参与共同决策方面面临独特挑战。许多利益相关者会影响护理管理决策，而孩子的认知障碍往往使其无法参与共同决策过程。对37名照顾者进行的深入访谈和焦点小组讨论，引出了他们在与孩子的教育、心理健康及其他护理需求相关的护理管理方面的经历。描述参与过程的四个主题是意识、激活、制定策略和行动。研究结果表明，心理教育和同伴支持可以提高照顾者对病情的认识并鼓励激活，这有助于在复杂的服务部门中进行导航。协调服务可以增强与多个提供者和利益相关者共同制定策略的能力。最终，这将有助于围绕共同的治疗目标进行共同决策，有望在限制最少的环境中实现更好的护理质量。
