Advocacy Campaign for the Rights of People with Disabilities: A
                        Participatory Action Research within a Community-based Rehabilitation
                        Project in Vangani, Maharashtra

Jaiswal, Atul; Gupta, Shikha

doi:10.5463/dcid.v27i4.529

Cited by 2 publications

(4 citation statements)

References 6 publications

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“…Many of the reviewed procedures were developed by members of a team in Canada that has the benefit of collaborating closely with rehabilitation centers, funded by the provincial government, that provide specialized services to this population free of charge (Wittich et al, 2012). Such a network greatly improves the identification and recruitment process and may not easily be replicated elsewhere; however, we have also been able to benefit from similar collaborations in the Global South (Jaiswal et al, 2022a; Jaiswal et al, 2020b; Jaiswal & Gupta, 2016). Furthermore, adults living with deafblindness are a very heterogeneous population (Simcock, 2017; Wittich & Simcock, 2019).…”

Section: Discussionmentioning

confidence: 99%

Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

Wittich,

Boie,

Jaiswal

2023

International Journal of Qualitative Methods

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Informed consent is essential in research involving people with disabilities to protect their rights and ensure ethical conduct. Individuals with communicative vulnerability, such as those living with deafblindness, face difficulties when the research process is not accessible. Our team has developed methodological expertise where this vulnerable population is concerned. To formalize recommendations that can improve their inclusion, we utilized an observational, retrospective design to address three questions: What are procedures that facilitate recruitment in a lab specializing on working with individuals living with deafblindness? What are optimal procedural adaptations to obtaining informed consent? and What training can best prepare researchers working with individuals living with deafblindness? First, we conducted a textual narrative synthesis of our eight most recent protocols and procedures that required in-person interaction with adults living with deafblindness. Second, we conducted semi-structured discussions among our team members, and third, we engaged in a validation procedure of the synthesized recommendations with our external partners. Procedural adaptations require flexibility in all aspects of recruitment and consent to accommodate communication needs. These include additional time, and accessible formats. Adaptations should consider vision (e.g., large-print, braille) and hearing (e.g., sign language, communication strategies) as well as aspects unique to deafblindness (e.g., intervener support, tactile communication). Consent can be documented in hand-written, electronic, audio or video-recorded format, and may be facilitated by third parties. Team training should include proficiency in plain language, basic knowledge about deafblindness, and awareness of accessibility features for mainstream devices. We present simple steps that can improve inclusion and increase accessibility for participants living with deafblindness, and that can improve the capacity of the research team by developing flexibility, patience, respect, and trust. This information can further inform institutional ethics review boards that are unfamiliar with the logistics of obtaining informed consent when working with participants living with deafblindness.

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Section: Discussionmentioning

confidence: 99%

Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

Wittich,

Boie,

Jaiswal

2023

International Journal of Qualitative Methods

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“…Factors related to engagement of community members in the uptake of interventions. Understanding community power structures and sociocultural norms were key to gaining community support of eye health promotion interventions [38], and facilitating their engagement in interventions such as spectacle compliance [55] and onchocerciasis treatment [32]. In Egypt, local government hospitals were perceived by community members as providers of lower quality of care, impacting a trichiasis surgery uptake [31]; while in Tanzania, women were more likely to report challenges with accessing trichiasis surgery [29].…”

Section: Plos Onementioning

confidence: 99%

“…• Deliver eye health education in schools [17][18][19][20] • Promote/supervise outdoor activities for myopia progression prevention [21,22] • Be vision ambassadors [23] • Train other teachers in vision screening [24] • Promote hygiene practices and train student hygiene ambassadors [25] Volunteers • Deliver or facilitating eye health/immunization education or health promotion in schools/community [26][27][28][29][30][31][32][33][34][35] • Deliver peer support groups for people with diabetes • Utilize local media for eye health promotion and advocacy [36][37][38] • Mobilize community members for eye care, diabetes care and immunization uptake [31,[39][40][41][42][43] • Discuss trachoma trichiasis care with community members [44] Peers • Deliver peer support groups for people with diabetes [45,46] • Utilizing local media for eye health promotion [47] • Delivery hygiene and sanitation education to peers [48] • Apply peer pressure to carers to immunize their children [49] • Be vision or trachoma ambassadors [23,25,50] Community health workers • Provide diabetic retinopathy sensitization/education [51,52] • Provide activities and education for carers to engage with vision impaired children [53]…”

Section: Teachersmentioning

confidence: 99%

“…• Delivering eye health and vaccination education within the community [29,38,56] • Involved in developing advocacy campaign and education materials [57] Local artists • Develop eye health education material [19] • Provide eye health education through performance [47,58] Patients • Using multimedia to improve cataract surgery informed consent [59] https://doi.org/10.1371/journal.pone.0278969.t003…”

Section: Teachersmentioning

confidence: 99%

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Integrated people-centered eye care: A scoping review on engaging communities in eye care in low- and middle-income settings

Lee

Moo²,

Angelopoulos³

et al. 2023

PLoS ONE

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Background Community engagement has been endorsed as a key strategy to achieving integrated people-centered eye care that enables people and communities to receive a full spectrum of eye care across their life-course. Understanding the ways communities are engaged in eye care, to what degree participation is achieved, and the factors associated with intervention implementation is currently limited. Objective The scoping review aimed to assess how community engagement is approached and implemented in eye care interventions in low- and middle-income countries, and to identify the barriers and facilitators associated with intervention implementation. Methods Searches were conducted across five databases for peer-reviewed research on eye care interventions engaging communities published in the last ten years (January 2011 to September 2021). Studies were screened, reviewed and appraised according to Cochrane Rapid Reviews methodology. A hybrid deductive-inductive iterative analysis approach was used. Results Of 4315 potential studies screened, 73 were included in the review. Studies were conducted across 28 countries and 55 targeted populations across more than one life-course stage. A variety of community actors were engaged in implementation, in four main domains of eye care: health promotion and education; drug and supplement distribution and immunization campaigns; surveillance, screening and detection activities; and referral and pathway navigation. With the approaches and level of participation, the majority of studies were community-based and at best, involved communities, respectively. Involving community actors alone does not guarantee community trust and therefore can impact eye care uptake. Community actors can be integrated into eye care programs, although with varying success. Using volunteers highlighted sustainability issues with maintaining motivation and involvement when resources are limited. Conclusion This scoping review provides researchers and policy makers contextual evidence on the breadth of eye care interventions and the factors to be considered when engaging and empowering communities in integrated people-centered eye care programs.

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Advocacy Campaign for the Rights of People with Disabilities: A Participatory Action Research within a Community-based Rehabilitation Project in Vangani, Maharashtra

Cited by 2 publications

References 6 publications

Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

Integrated people-centered eye care: A scoping review on engaging communities in eye care in low- and middle-income settings

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