Otjr-Occupation Participation and Health最新文献

Reflexivity can be an important tool for building relationships for participatory research. The purpose of this article was to explore key indicators of a developing participatory action research partnership between an occupational therapy education program and a developmental disability agency. Agency staff leaders and occupational therapy faculty participated in a contextual and interpersonal reflexivity process during participatory action research. Through this process, researchers recognized similar values between their organizations. They also reflected on the evolving mutual benefit of the partnership over time. The relationship grew by including each other in activities important to their organizations. Increasing responsibilities, including the process of agency staff becoming university-recognized researchers, facilitated becoming researchers together. Collaborative, structured reflexivity can illuminate meaning and characteristics of a developing participatory action research partnership. The process and findings can inform future partnerships, especially for entry-level occupational therapy education programs.

People with multiple sclerosis (PwMS) face significant challenges in community participation. While existing efforts primarily target individual-level barriers, broader system-level support remains underexplored. The objective of this study was to identify actionable system-level changes that support PwMS in community participation. Using a community-engaged research approach, we conducted an online community engagement meeting (CEM) with diverse MS community members. A community advisory board was involved in planning, implementation, and dissemination. The CEM featured a research presentation and facilitated discussions to identify potential solutions. Participants completed a post-event feedback survey. Twenty-one participants proposed specific recommendations for bridging information gaps, improving MS care, enhancing environmental accessibility, and combating ableism. Eleven survey respondents reported meaningful participation in the CEM. The recommendations were shared directly with a policymaker. This study provides an example of engaging community members in an action-oriented dissemination activity, generating insights that can inform future support efforts by professionals and policymakers.

Peer support interventions complement traditional rehabilitation services and contribute to improving physical and mental health and community living outcomes in diverse disability populations. Yet, little is known about the impact that being a peer support worker has on people with physical disabilities who take on these roles. Peer health navigators (PHN) are a type of peer support worker specifically trained to help other people with disabilities breakdown barriers to health, healthcare, and social participation. This qualitative study explored identity transformations experienced by people with physical disabilities after adopting a PHN role in a community-based participatory research intervention study. Specifically, we used interpretative phenomenological analysis to explore the lived experiences of peer health navigators from the Our Peers-Empowerment Navigational Support study. Participants identified that serving as a PHN had a transformative impact on their disability experience through relational processes of co-creation of a positive disability identity and reciprocal empowerment. Occupational therapy practitioners can facilitate peer support through intentional skill and community building.

Participatory research is critical for developing appropriate and effective programs for specific communities. Suicide is a health inequity for autistic people and prevention is a high priority for autistic community members. Using community-based participatory research with autistic partners, we aimed to develop a research-informed, conceptually grounded, and community-supported suicide prevention program for the autism community. The participatory, multistep program development process included regular meetings to integrate existing research with an established intervention framework and was informed by 38 qualitative research interviews with autistic adults, family members, and mental health providers. The development process resulted in a four-part, virtual, education and community empowerment program-Forming Love around Autistic People to Prevent Suicide (FLAPS)-aimed at supporting organizations to engage in multilevel suicide prevention efforts. Participatory research that meaningfully engages autistic community partners can support the development of promising programs to promote suicide prevention for autistic people.

Engaging community collaborators in research is crucial for enhancing health care outcomes, especially for cerebral palsy (CP). However, effective multi-collaborator involvement poses challenges. This study used an occupation-based approach to engage community collaborators in developing a CP Task Force to initiate patient-centered comparative clinical effectiveness research and evaluated member perspectives on roles and experiences. A repeated cross-sectional design was employed, with 18 CP Task Force members completing 39 surveys. Engagement activities focused on social participation, leisure, play, education, and work. Surveys assessed team culture, trust, and role satisfaction. Descriptive statistics analyzed survey data, while thematic analysis summarized qualitative responses. Participants reported high satisfaction and engagement. Key themes included inclusivity, effective communication, accessibility, and expanded engagement. Occupation-based engagement can enhance collaboration, build rapport, and create a shared sense of purpose among multi-collaborators when establishing a CP Task Force to support patient-centered comparative clinical effectiveness research.

Sickle cell disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent, yet care coordination between academic medical centers and community organizations remains limited. To identify strategies for strengthening community-academic partnerships to enhance care delivery for children with SCD through focus groups with community partners in a midwestern metropolitan area. Using qualitative descriptive methodology, we conducted two focus groups and three individual interviews with 12 community partners, including health care providers and advocates. Thematic analysis revealed three key findings: persistent multi-level knowledge gaps about SCD, the importance of strategic partnerships between health care organizations and community groups, and specific community-identified solutions for sustainable collaboration. Results highlighted how structured partnerships between academic institutions and community organizations can address systemic barriers in SCD care delivery through knowledge sharing, resource access, and coordinated screening protocols, informing practical strategies for implementing sustainable improvements in care coordination.

Involving people with lived experience is important to mental health service design, development, and research. This study explored the personal meaning and impact of participating in lived experience opportunities for consumers and carers. Six semi-structured interviews with consumer and carer volunteers at an Australian community mental health service were analyzed through an interpretative phenomenological lens. A steering group, formed by staff with lived expertise, guided the research. Five themes were identified: "Transforming negative experiences into positive contributions," "Self-growth through lived experience participation," "Connections and support through lived experience participation," "Considerations for supporting consumers and carers in a team," and "Considerations for setting up voluntary lived experience participation roles." Lived experience engagement is meaningful to consumers and carers. Creating safe-enough environments that support participation in decision-making requires valuing diverse opinions, having supportive facilitators, acknowledging demands of sharing lived experiences, and paid remuneration.

Amid calls for inclusion of autistic people in research, we present findings from our community-engaged study on the experiences of families of autistic girls, who experience disparities in autism identification, and show how the Autistic Lived Experience Collaborators (ALEC) in the Disparity Reduction and Equity in Autism Services (DREAmS) Lab influenced our findings. In Part 1 of our multimethod study, 21 caregivers completed interviews and survey questions. In Part 2, 10 Hispanic/Latino caregivers from Part 1 completed 1 to 3 interviews. Analysis used descriptive statistics and a narrative thematic approach. We also drew from analysis meeting notes. Girls from Spanish-speaking families had later ages of autism identification, which informed our qualitative themes: Survival Explains Stigma, a view of Hispanic/Latino culture that clarified the "stigma" that impacted the diagnostic process; and Intergenerational Influences on staying safe, which could include masking autistic traits. ALEC quotes show their contributions. Our community-engaged approach contributed to our findings and a more complex view of culture.

Individuals with unreliable, minimal, or non-speaking autism face significant challenges in expressing themselves. Historically, these communication difficulties have been attributed to cognitive deficits, however, emerging research suggests that apraxia, may be a primary barrier to effective communication. This study aims to explore the role of apraxia affecting speech, and how society views and supports communication. This auto-ethnographic study is informed by the lived experiences of three minimally speaking autistic individuals, highlighting the disconnect between cognitive capacity and expressive speech. The analysis resulted in the following themes: (a) apraxia as a global motor impairment and (b) disconnecting apraxia from intellectual function. This research underscores the need for adaptive communication strategies and inclusive policies that recognize intelligence and cognitive capabilities beyond verbal outputs. A shift toward understanding the impact of apraxia on communication within this population will foster more equitable access to education, health care, and social participation.

Co-design is increasingly being adopted within mental health service design and delivery, but is less common in research. Co-design ensures that research is relevant and benefits people accessing services. This review examined frameworks, models, and/or guidelines for co-designing mental health research, asking: (a) How is co-design defined? (b) What are the elements, values, and design tools? (c) What recommendations are proposed? A scoping review of peer-reviewed and gray literature on co-design in mental health research was undertaken and narratively synthesized. A total of 28 studies were included, showing varied understandings of co-design. Key values included social justice, recognizing lived experience as expertise, and fostering safe and trusting relationships. Traditional academic structures often hinder co-design; however, innovative research methods have shown potential. Recommendations and strategies to overcome barriers are provided. To enhance the adoption of co-design in mental health research, clearer terminology and agreed-upon values and processes are needed.