Consumer Perspectives on Family Involvment in Care

描述（由申请人提供）：对重度精神疾病（SMI）患者的家庭成员进行基于证据的心理社会干预，以及在适当情况下让家庭参与其亲属护理的良好临床实践，都已被证明对重度精神疾病（“消费者”）患者及其家庭成员有益。家庭心理教育（FPE）等项目帮助重度精神障碍患者的家庭，并帮助他们优化建设性的照顾参与。因此，这些以证据为基础的做法已列入最近的各种高质量精神卫生保健标准。但是，它们的传播和执行受到各种障碍的严重阻碍。改善这些障碍和优化家庭参与的工作很少包括对重度精神障碍成人的角色、经历或观点的调查。然而，消费者是供应商联系和吸引家庭成员的主要渠道。消费者视角的缺失给我们解决家庭参与挑战的知识留下了严重的空白，包括FPE和类似干预措施的实施。弥合这些差距可能会改善家庭参与度、实际提供的心理健康服务质量、消费者体验，并将促进相关研究。因此，本研究将询问患有重度精神障碍的成年人在临床护理和疾病管理中关于家庭参与的经历、角色、观点和意义，以建立一个消费者视角的家庭参与理论。它将通过个人深入访谈和稍后的焦点小组讨论来做到这一点。一个正在进行的消费者咨询小组的投入将加强该项目。整个项目将在建构主义扎根理论定性研究范式内进行。参与者将在几个区域性重度精神障碍患者自助组织和几个社区精神卫生机构招募，以便招收各种各样的消费者，他们参与的精神卫生活动和家庭关系各不相同。本研究的数据将阐明消费者在家庭参与方面的观点和角色的重要方面，使我们能够建立一个概念模型/理论，然后我们将通过随后的R-01应用程序应用和测试。研究结果还将直接应用于相关研究、消费者在家庭参与中的角色、家庭参与心理社会干预（包括FPE）和评估，并可能具有政策影响。本研究的数据将阐明消费者在家庭参与方面的观点和角色的重要方面，使我们能够建立一个概念模型/理论，然后我们将通过随后的R-01应用程序应用和测试。研究结果还将直接应用于相关研究、消费者在家庭参与中的角色、家庭参与心理社会干预（包括FPE）和评估，并可能具有政策影响。

DESCRIPTION (provided by applicant): Evidence-based psychosocial interventions for family members of people with serious mental illnesses (SMI), and good clinical practices involving family in their relative's care when appropriate, have both been shown to benefit adults with SMI ("consumers") and their family members. Programs such as family psycho-education (FPE) assist families of people with SMI and help optimize their constructive care-giving involvement. As such these evidence-based practices have been included in various recent standards of quality mental health care. However, their dissemination and implementation have been seriously hampered by various obstacles. Work to ameliorate these obstacles and optimize family involvement has rarely included inquiry into the roles, experiences, or views of adults with SMI. Yet consumers are the primary channel through which providers contact and engage family members. The omission of a consumer perspective leaves critical gaps in the knowledge we can bring to resolve the challenges of family engagement and involvement, including the implementation of FPE and similar interventions. Bridging those gaps would likely improve family engagement, the quality of mental health services as they are actually delivered, consumer experiences, and would facilitate relevant research. Therefore, this study will ask adults with SMI about their experiences, roles, opinions, and meaning-making regarding family involvement in their clinical care and illness management, towards developing a theory of consumer perspectives on family involvement. It will do so through individual in- depth interviews and later focus-group discussions. The project will be enhanced by the input of an ongoing consumer advisory group. The entire project will be conducted within a constructivist grounded theory qualitative research paradigm. Participants will be recruited at several regional self-help organizations of people with SMI and several community mental health agencies in order to enroll a wide variety of consumers with a diversity of mental health involvement and family relationships. Data from this study will elucidate important aspects of consumers' perspectives and roles regarding family involvement, allowing us to build a conceptual model / theory that we will then apply and test through a later R-01 application. Study results will also be applied directly to inform and improve relevant research, consumer roles in family involvement, family engagement in psychosocial interventions (including FPE), and evaluation, and may have policy implications. Data from this study will elucidate important aspects of consumers' perspectives and roles regarding family involvement, allowing us to build a conceptual model / theory that we will then apply and test through a later R-01 application. Study results will also be applied directly to inform and improve relevant research, consumer roles in family involvement, family engagement in psychosocial interventions (including FPE), and evaluation, and may have policy implications.