scholarly journals Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy

2016 ◽  
Vol 15 (3) ◽  
pp. 258-275 ◽  
Author(s):  
Dora M Raymaker
Keyword(s):  
Social Services ◽  
Community Based Participatory Research ◽  
Autism Spectrum ◽  
Story Telling ◽  
Research Setting ◽  
Community Based ◽  
Self Reflection ◽  
Narrative Story ◽  
Power And Resistance ◽  
Personal Experiences

This article uses an evocative autoethnographic approach to explore the experience of being an insider-researcher in a community-based participatory research setting. Taking a holistic perspective and using the form of narrative story-telling, I examine the dynamics between the typically marginalizing (but sometimes empowering) experience of being an autistic woman and the typically privileging (but sometimes oppressive) experience of being an engineering professional, during a time of career upheaval. Themes of motivations and mentors, adversity from social services and the academy, belonging, the slipperiness of intersectional positioning, feedback cycles of opportunity, dichotomies of competence and inadequacy, heightened stakes, and power and resistance are explored through the narrative. While primarily leaving the narrative to speak for itself per the qualitative approach taken, the article concludes with a discussion of how the personal experiences described relate both to the broader work of insider-researchers within disability-related fields, and to misconceptions about self-reflection and capacity for story-telling in individuals on the autism spectrum.

Stakeholder Perspectives on the Stigma of Suicide Attempt Survivors

Crisis ◽  
2017 ◽  
Vol 38 (2) ◽  
pp. 73-81 ◽  
Author(s):  
Lindsay L. Sheehan ◽  
Patrick W. Corrigan ◽  
Maya A. Al-Khouja ◽  
Keyword(s):  
Suicide Attempt ◽  
Health Professionals ◽  
Attempted Suicide ◽  
Community Based Participatory Research ◽  
Public Stigma ◽  
Suicide Method ◽  
Community Based ◽  
Stakeholder Perspectives ◽  
Personal Experiences ◽  
Prejudice And Discrimination

Abstract. Background: Past scholarly efforts to describe and measure the stigma surrounding suicide have largely viewed suicide stigma from the perspective of the general public. Aims: In the spirit of community-based participatory research (CBPR), the current study brought together a diverse stakeholder team to qualitatively investigate the suicide stigma as experienced by those most intimately affected by suicide. Method: Seven focus groups (n = 62) were conducted with suicide attempt survivors, family members of those who died by suicide, and suicide loss therapists. Results: Themes were derived for stereotypes (n = 30), prejudice (n = 3), and discrimination (n = 4). People who attempted suicide were seen as attention-seeking, selfish, incompetent, emotionally weak, and immoral. Participants described personal experiences of prejudice and discrimination, including those with health professionals. Conclusion: Participants experienced public stigma, self-stigma, and label avoidance. Analyses reveal that the stigma of suicide shares similarities with stereotypes of mental illness, but also includes some important differences. Attempt survivors may be subject to double stigma, which impedes recovery and access to care.

What do adults with ASD desire in their residence?

2015 ◽  
Vol 18 (1) ◽  
pp. 31-40
Author(s):  
Anne Selcer ◽  
Megan Karlsen ◽  
Jordan Mitchell ◽  
Phillip J Decker ◽  
Roger Durand
Keyword(s):  
Community Based Participatory Research ◽  
Autism Spectrum ◽  
Case Managers ◽  
Residential Facility ◽  
Community Based ◽  
Content Type ◽  
Placement Decisions ◽  
Site Staff ◽  
Facility Placement ◽  
Adults With Asd

Purpose – Currently, approximately one in 100 Americans meet the criteria for an autism spectrum disorder (ASD) diagnosis. Males are four-to-five times more likely to be diagnosed than females. Because the demand for ADS community-based services outweigh available resources, applicants are placed on a waiting list until services are available. Some wait for years; many adults with an ASD continue to live with their parents who also often serve as de facto case managers. When the decision of which facility to place a resident comes, most families are unprepared to make the decision. The paper aims to discuss these issues. Design/methodology/approach – Community-based participatory research theory was used in designing interviews of family members facing residential facility placement decisions. Ten interviews were conducted with families. Findings – Participant answers were categorized within the topic areas of: physical site, staff, transportation, community, diet, behavior, medical, and faith. Research limitations/implications – Individuals with ASD and their families have varied answers as to what they desire in a residential facility. The most important factor, however, is that the questions be asked, that they be listened to and be given choices on what residence fits their own particular needs. Originality/value – This study determined what is important to the families of and individuals with intellectual and mental disabilities and autism when looking for community-based placement.

scholarly journals Community-Based Participatory Research for Health

2018 ◽  
Vol 20 (1) ◽  
pp. 15-17 ◽  
Author(s):  
Janet Page-Reeves
Keyword(s):  
Case Studies ◽  
Health Equity ◽  
Participatory Research ◽  
Collaborative Work ◽  
Community Based Participatory Research ◽  
Valuable Resource ◽  
Community Based ◽  
Transformative Power ◽  
Self Reflection

The new edition of Community-Based Participatory Research for Health by Nina Wallerstein and colleagues is an extremely valuable resource for a wide variety of stakeholders interested in collaborative work to promote health equity. This updated collection succinctly delineates the theory, history, principles, and practices of community-based participatory research (CBPR) to help the reader understand CBPR as an approach, a philosophy, and an ethic. This updated edition will serve as a helpful resource for those interested in incorporating CBPR principles and approaches into their work. The chapters are authored by leaders and innovators in CBPR who provide insights, share experiences, and describe case studies that expand our ability to understand and envision the transformative power of CBPR in practice. The book is divided thematically into seven parts plus 13 appendices. Updates to this edition align with critical dialogues about positionality, privilege, and power in a way that encourages healthy self-reflection.

Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting

2016 ◽  
Vol 12 (3) ◽  
pp. 149-157 ◽  
Author(s):  
C Strike ◽  
A Guta ◽  
K. de Prinse ◽  
S Switzer ◽  
S Chan Carusone
Keyword(s):  
Social Services ◽  
Participatory Research ◽  
Ethical Issues ◽  
Care Delivery ◽  
Clinical Care ◽  
Hospital Setting ◽  
Community Based Participatory Research ◽  
Original Research ◽  
People Living With Hiv ◽  
Community Based

Community-based participatory research (CBPR) is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with HIV and addictions issues. The structure of hospital-based care delivery required the team to account for participants’ health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process.

scholarly journals S.O.S. Caregivers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings.

2021 ◽  
Author(s):  
Guendalina Graffigna ◽  
Eleonora Gheduzzi ◽  
Niccolò Morelli ◽  
Serena Barello ◽  
Massimo Corbo ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Services ◽  
Community Based Participatory Research ◽  
Support Service ◽  
Social Consequences ◽  
Social Intervention ◽  
Community Based ◽  
Ageing Society ◽  
Age In Place ◽  
Rural Settings

Abstract Background Family caregivers are key actors in the ageing society. They play a pivotal role in enabling the possibility of elders to age in place, so to live at home for as long as possible. They also are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly citizens living in the remote rural area in Italy. Methods The project included a quantitative analysis of caregivers needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a new service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. Results Family caregivers play a key role in the Western care system, but at expenses of experiencing negative psycho-social consequences. The actual support is largely insufficient to the meet the needs of service users. Caregivers expressed need to be better trained, informed and supported especially between peers. The service has been successful to co-produce a psycho-social intervention that has ameliorated already existing services, creating new support service for caregivers and increasing trust among users and providers. Conclusions A dedicated training or support service for caregivers can ameliorate caregiving conditions. The service SOS Caregivers has resulted a successful co-productive service for a psyho-social intervention on family caregivers. For the future, we suggest that they should be an active partner in the process of creating new psycho-social services and not just as recipients in order to enhance a better age in place process.

scholarly journals Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Guendalina Graffigna ◽  
Eleonora Gheduzzi ◽  
Niccolò Morelli ◽  
Serena Barello ◽  
Massimo Corbo ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Services ◽  
Participatory Research ◽  
Rural Areas ◽  
Effective Means ◽  
Community Based Participatory Research ◽  
Support Service ◽  
Community Based ◽  
Research Project ◽  
Ageing Society

Abstract Background Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. Methods This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. Results As the hours dedicated to elder care increases, both objective and developmental caregiver’s burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens’ management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers’ pivotal role. Conclusions A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

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