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.

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.

Download Full-text

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

BMC Health Services Research ◽

10.1186/s12913-021-06563-5 ◽

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.

Download Full-text

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

Action Research ◽

10.1177/1476750316636669 ◽

2016 ◽

Vol 15 (3) ◽

pp. 258-275 ◽

Cited By ~ 10

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.

Download Full-text

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

Research Ethics ◽

10.1177/1747016115626496 ◽

2016 ◽

Vol 12 (3) ◽

pp. 149-157 ◽

Cited By ~ 4

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.

Download Full-text

Stakeholder Perspectives on the Stigma of Suicide Attempt Survivors

Crisis ◽

10.1027/0227-5910/a000413 ◽

2017 ◽

Vol 38 (2) ◽

pp. 73-81 ◽

Cited By ~ 31

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.

Download Full-text