Consumer Perspectives on Family Involvement in Care

描述(由申请人提供)：对严重精神病患者(SMI)的家庭成员进行循证的心理社会干预，以及在适当的情况下让家人参与其亲属的护理的良好临床实践，都被证明对患有SMI的成年人(“消费者”)及其家庭成员有利。家庭心理教育(FPE)等项目帮助患有SMI的家庭，帮助他们优化建设性的护理参与。因此，这些以证据为基础的做法已被纳入各种最新的高质量精神卫生保健标准。然而，它们的传播和实施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患有SMI的成年人的角色、经历或观点的调查。然而，消费者是供应商联系和接触家庭成员的主要渠道。忽略了消费者的观点，在我们可以带来的知识方面留下了严重的空白，以解决家庭参与和参与的挑战，包括实施FPE和类似的干预措施。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的质量、消费者体验，并将促进相关研究。因此，这项研究将询问患有SMI的成年人关于他们在临床护理和疾病管理中的家庭参与的经验、角色、观点和意义形成，以发展消费者关于家庭参与的理论。它将通过个别深入采访和随后的焦点小组讨论来做到这一点。该项目将通过一个正在进行的消费者咨询小组的投入而得到加强。整个项目将在建构主义扎根的理论定性研究范式下进行。参与者将在几个地区性精神障碍患者自助组织和几个社区精神健康机构招募，以招募参与精神健康和家庭关系多样化的各种消费者。这项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，使我们能够建立概念模型/理论，然后我们将通过稍后的R-01应用来应用和测试。研究结果还将直接应用于提供信息和改进相关研究、消费者在家庭参与中的作用、家庭参与心理社会干预(包括FPE)和评估，并可能产生政策影响。这项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，使我们能够建立概念模型/理论，然后我们将通过稍后的R-01应用来应用和测试。研究结果还将直接应用于提供信息和改进相关研究、消费者在家庭参与中的作用、家庭参与心理社会干预(包括FPE)和评估，并可能产生政策影响。

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.