Participatory research: A promising approach to promote meaningful engagement

Asaba, Eric; Suárez-Balcázar, Yolanda

doi:10.1080/11038128.2018.1541224

Cited by 22 publications

(17 citation statements)

References 25 publications

(22 reference statements)

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“…As with PPSR, we have elected to include a wide range of diverse projects from hypothesis-driven science to practices that involve local knowledge and observations for addressing the political and social issues that communities face. Our broad interpretation of citizen science includes any initiative that produces scientific knowledge through the participation of volunteers, such as community-based monitoring (Conrad and Hilchey 2011), community-based participatory research (Asaba and Suarez-Balcazar 2018), participatory action research (MacDonald 2012), citizen-generated data (Datashift 2017), crowdsourcing (Howe 2006;Nov et al 2010), volunteered geographic information (Sieber and Haklay 2015), and participatory sensing (Coulson et al 2018), among others.…”

Section: Introductionmentioning

confidence: 99%

Mapping citizen science contributions to the UN sustainable development goals

et al. 2020

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The UN Sustainable Development Goals (SDGs) are a vision for achieving a sustainable future. Reliable, timely, comprehensive, and consistent data are critical for measuring progress towards, and ultimately achieving, the SDGs. Data from citizen science represent one new source of data that could be used for SDG reporting and monitoring. However, information is still lacking regarding the current and potential contributions of citizen science to the SDG indicator framework. Through a systematic review of the metadata and work plans of the 244 SDG indicators, as well as the identification of past and ongoing citizen science initiatives that could directly or indirectly provide data for these indicators, this paper presents an overview of where citizen science is already contributing and could contribute data to the SDG indicator framework. The results demonstrate that citizen science is “already contributing” to the monitoring of 5 SDG indicators, and that citizen science “could contribute” to 76 indicators, which, together, equates to around 33%. Our analysis also shows that the greatest inputs from citizen science to the SDG framework relate to SDG 15 Life on Land, SDG 11 Sustainable Cities and Communities, SDG 3 Good Health and Wellbeing, and SDG 6 Clean Water and Sanitation. Realizing the full potential of citizen science requires demonstrating its value in the global data ecosystem, building partnerships around citizen science data to accelerate SDG progress, and leveraging investments to enhance its use and impact.

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Section: Introductionmentioning

confidence: 99%

Mapping citizen science contributions to the UN sustainable development goals

et al. 2020

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“…Although participatory approaches originate in social critical approaches, researchers’ underlying epistemologies and conceptual or theoretical frameworks often shape the actual process (e.g., see Asaba et al, 2014 ). Arguably, as Asaba and Suarez-Balcazar (2018) point out, participatory approaches “gained momentum in times when scholars were examining methodological approaches to address participation and health disparities,” although there remain differing levels of community or participant engagement (p. 309). We describe the conceptual frameworks and differing levels of engagement of autistic persons and their parents in the two studies below.…”

Section: Methodsmentioning

confidence: 99%

The Need for Sensory-Friendly “Zones”: Learning From Youth on the Autism Spectrum, Their Families, and Autistic Mentors Using a Participatory Approach

et al. 2022

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IntroductionDifferences in sensory processing were linked to a diagnosis of autism spectrum disorder (ASD) before its inclusion as a core characteristic in the revised DSM-V. Yet, research focused on sensory processing and meaningful participation of children and youth with ASD remains relatively scarce. Although refinement of the International Classification of Functioning and Disability (ICF) relies on first-person accounts, longitudinal studies that foreground sensory experiences and its impact on involvement in a life situation from first-person perspectives are largely missing from this body of research.ObjectivesIn this sub-study, we drew from a longitudinal participatory research project consisting of two separately funded studies with children and youth with ASD and their families between 2014 and 2021. The participatory project used photovoice (PV) methods to identify the primary concerns related to socio-spatial exclusion (PV-1) and the action steps needed to redress them (PV-2). The objective of this sub-study was to understand what really mattered to children with autism, their parents, autistic youth and an adult mentor to consider how their experiential knowledge could deepen understanding of meaningful participation.Materials and MethodsWe used an overarching narrative phenomenological and aesthetic theoretical framework to focus data analysis on the bodily sensing experiences related to significant moments or events, followed by an inductive thematic analysis of what mattered about those moments.ResultsThe topical areas of concern that emerged from analyses were: (1) the relationship between sensory experiences and mental health (motion madness); (2) the indivisibility or layering of sensory and social experiences (squishing and squeezing); (3) the impact when “tricks” to stay involved are categorically misunderstood (When you don’t respond in the correct way), and (4) how care and consideration of others can lead to innovative solutions for inclusion (I can’t be the only one). Listening to the bodily-sensing experiences of children with ASD, autistic youth and adults, and their families in their own terms has implications for remapping the ICF and envisioning sensory curb-cuts to access, initiate and sustain occupational participation for all.

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“…The study draws on ethnographic methods aligned with participatory design in order to discover, engage, and learn about how everyday situations work in a NH setting (Smith, 2006 ). The participatory design (Asaba & Suarez-Balcazar, 2018 ) was applied for planning and conducting the research process in the study to promote active involvement of the study participants (e.g., to guide the staff in planning, recruiting the residents, applying photography as an activity conducted by the residents and caregiver staff, and interviewing the participants). A narrative approach wa…”

Section: Methodsmentioning

confidence: 99%

Communication and engagement as potentiality in everyday life between persons with young onset dementia living in a nursing home and caregivers

Fallahpour

Nygård

Asaba

2022

International Journal of Qualitative Studies on Health and Well

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Objectives To explore communication and engagement in everyday situations between persons with young-onset dementia (YOD) living in a nursing home (NH) and the caregivers. Methods The study draws on ethnographic methods aligned with participatory design. Three residents with YOD living in a NH and eight staff members were recruited. A narrative approach was used for data collection and analysis. Findings Three narrative vignettes were developed representing everyday situations in which communication and engagement was enacted among residents and caregiver staff: (a) waiting for something to happen, (b) tensions about everyday communication, and (c) negotiating a combined living + working environment. The findings stress a paradoxical tension rooted in the NH as residence and workplace as well as place of calm and place of boredom. The everyday situations are interpreted differently from the perspective of the residents and staff. Conclusion The identified paradox of planned and spontaneous situations influences communication and engagement in everyday life, and the potentiality for active engagement embedded in contexts of units for residents with YOD. The degree to which everyday activities and encounters are redefined and renegotiated is an important part of caregiving practices in NH settings for residents with YOD.

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Participatory research: A promising approach to promote meaningful engagement

Cited by 22 publications

References 25 publications

Mapping citizen science contributions to the UN sustainable development goals

Mapping citizen science contributions to the UN sustainable development goals

The Need for Sensory-Friendly “Zones”: Learning From Youth on the Autism Spectrum, Their Families, and Autistic Mentors Using a Participatory Approach

Communication and engagement as potentiality in everyday life between persons with young onset dementia living in a nursing home and caregivers

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