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1.
Birth ; 2024 Aug 16.
Artículo en Inglés | MEDLINE | ID: mdl-39149793

RESUMEN

Before colonization, Aboriginal and Torres Strait Islander communities had nurturing, holistic, and communitarian approaches that promoted extended and healthy lives for their children. Colonization, marked by policies of genocide and assimilation, has resulted in an alarming overrepresentation of Aboriginal and Torres Strait Islander children under the care of child protection agencies, resulting in compromised health outcomes and reduced life expectancies. We are conducting a study designed to enhance positive developmental outcomes for Aboriginal and Torres Strait Islander children by articulating and enabling the rights of mothers and children to breastfeed in the context of a child protection intervention and child removal. To understand and address this problem, it is critical to implement culturally safe, de-colonized, emancipatory research that is guided by and benefits Aboriginal and Torres Strait Islander communities. This article presents an emancipatory framework that we are applying to our study using an Aboriginal participatory action research approach, that serves as a guide for non-Indigenous researchers seeking to conduct research with Indigenous communities. We emphasize the importance of incorporating an Aboriginal participatory action research framework, using community consultation and codesign; culturally secure data collection methods, and paying attention to Indigenous data sovereignty. Developing trusting respectful relationships is conducive to knowledge acquisition, exchange, and use, when research approaches deeply rooted in community involvement are applied. A call to action by the critical midwifery studies collective, urges non-Indigenous researchers to become accountable allies that demonstrates respect for community leadership while actively striving to ensure research does not perpetuate further harm, and produces effective change. This article provides an overview of ways to conduct ethical emancipatory research with Indigenous participants, that is, of benefit to midwifery practitioners and is applicable to many areas of research, policy, and practice.

2.
Phys Ther ; 2024 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-39052332

RESUMEN

The COVID-19 pandemic and recent incidents of social injustice exposed the systemic racism and discrimination in health care and clinical research that perpetuate systemic inequities. This perspective utilizes the acronym JEDI (justice, equity, diversity, and inclusion) as a vision for addressing inequities in physical therapy research. The need to go beyond diversity and focus on inclusion, equity, and justice is emphasized to achieve transformation within physical therapy research. The prevailing research paradigms are examined, acknowledging that research can perpetuate inequities and reinforcing the importance of integrating JEDI principles into the research process. The underrepresentation of diverse researchers in physical therapy is discussed, as well as the barriers faced by underrepresented researchers and research participants. Funding disparities are also highlighted, emphasizing the need for JEDI principles in research funding practices. How other health professions' associations are addressing JEDI in research is also explored. The authors propose a framework for action, utilizing the concepts of the socioecological model to identify gaps in JEDI within physical therapy research at different levels of influence and conclude by emphasizing the importance of justice in dismantling inequitable systems and urge the physical therapy research community to become JEDI warriors to bring about transformative change. IMPACT: By championing cultures that value justice, equity, diversity, and inclusion, individuals within the physical therapy research community have the potential to ignite a powerful transformation in society. The authors envision a future where JEDI warriors emerge, embracing the spirit of "Do or do not. There is no try," to forge a research community that is inclusive for all.1 Drawing inspiration from this mindset, this perspective seeks to empower individuals to harness the force of a JEDI warrior, fostering cultures that value justice, embrace inclusive methodologies, and ensure equitable access to resources and opportunities for researchers and participants.

3.
Vet Clin North Am Small Anim Pract ; 54(5): 797-811, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39003176

RESUMEN

This article advocates for qualitative research in veterinary medicine, highlighting its importance for understanding diverse experiences, and thus providing the opportunity for improving diversity, equity, and inclusion in the field. It contrasts qualitative with quantitative methods and addresses the concept of epistemic violence. Emphasizing community-based, emancipatory approaches, it urges adopting humanizing and liberatory research frameworks that challenge traditional research methods, underscoring qualitative research's role in fostering equity, empathy, and deeper understanding within the field.


Asunto(s)
Diversidad Cultural , Investigación Cualitativa , Medicina Veterinaria , Humanos , Animales
4.
J Autism Dev Disord ; 2024 Jul 24.
Artículo en Inglés | MEDLINE | ID: mdl-39046685

RESUMEN

Being diagnosed with autism has multiple implications for a person's life and self-identity. Although learning about autism at a younger age is correlated with quality of life, only a few studies have addressed parental disclosure thereof. This study conceptualizes autistic adults' perspectives on parental disclosure. The methods combine grounded theory with the emancipatory research paradigm, drawing on autistic people's personal knowledge. Eighty-five autistic adults participated in six focus groups (51 male, 33 female, 3 non-binary; Mage = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; Mage = 28). Both focus groups and individual interviews addressed the way participants learned about their diagnosis from their parents, and their recommendations to other parents on how to disclose. Based on these findings, we developed autistic-driven recommendations for parental disclosure process. The participants viewed the diagnosis as validating their experienced otherness, helping them overcome shame, and promoting their self-understanding and self-advocacy skills. They recommended disclosure as soon as possible after diagnosis and stressed the importance of gradual disclosure according to the child's abilities. Furthermore, they suggested focusing on how autism manifested in the child's own life, rather than "autism" in general. Finally, they recommended presenting autism as a neutral or positive quality, highlighting its strengths and networking the child with other autistic individuals. In conclusion, this study reveals that parental disclosure is an ongoing and spiral process. The proposed model contributes significantly to post-diagnostic support for parents, providing a framework for effective communication about autism with their children.

5.
Fam Process ; 62(3): 899-914, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37156533

RESUMEN

A lack of diversity exists in couples research with an overrepresentation of white, middle to upper income couples. Additionally, researchers often do not reflect the study sample, particularly when studying underrepresented minority and historically marginalized (URM-HM) populations. Emancipatory research practices focus on language, processes, and practices to ensure that researchers and the research they conduct honor and contribute to the empowerment of the URM-HM research participants. Therefore, in this paper, we discuss five critical considerations with recommendations for emancipatory research practices for including couples from URM-HM populations. The aim is to provide a framework for researchers to critically reflect on their work with URM-HM populations. The research practices include: (a) research positionality and reflexivity; (b) understanding of the population being served; (c) power and empowerment; (d) accountability, voice, and participant engagement; and (e) research that benefits URM-HM populations and challenges the systems that perpetuate inequities. Additionally, we present practical strategies to implement these five considerations based on our own experiences conducting community-effectiveness studies with low-income and diverse couples.


Asunto(s)
Empoderamiento , Pobreza , Humanos , Grupos Minoritarios , Lenguaje
6.
Z Erziehwiss ; 25(3): 745-764, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35401047

RESUMEN

In this article we apply an Afrocentric Resilience Theory (relationship-resourced resilience) to the domain of education research partnerships. We posit academic flocking as an equitable research partnership approach aimed at developing education knowledge that responds to collective distress and supports collective quality education. We provide support for our supposition regarding academic flocking by overviewing the mutually beneficial development of an online, home-based learning resource with relevance in two transnational contexts and cultures, South Africa and the United States of America. Whereas the context of the argument is a COVID-19 related global need for evidence-based education resources, conceptually we draw on lenses of resilience and emancipatory, democratising methodology to make sense of academic flocking as a fundamental structure for research partnership equity and relevant education innovation. As such, academic flocking holds value as a transformative alternative for South-North researcher partnerships in generating useful, quality educational innovations to address critical needs.

7.
Health Promot Pract ; 23(2): 211-220, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35285313

RESUMEN

Photovoice can be more than a research method for communities to identify and mitigate social oppressions. Photovoice has the potential for emancipatory outcomes and the transformation of power relations. This article serves as a primer for beginning researchers who are new to the emancipatory power of the photovoice method or for advanced researchers who would like to re-imagine their current use of the photovoice method to an emancipatory approach that elevates and empowers. Our purpose is to provide a framework for deciding structures, processes, and outcomes of emancipatory photovoice. We specifically prescribe steps with respect to power relations among partners, design prompts or heuristics, and the anticipated and unanticipated outcomes. We base our perspectives on over a decade of photovoice research experiences. Emancipatory photovoice research, if implemented thoughtfully, can facilitate power sharing, collective learning, healing, and growth.


Asunto(s)
Fotograbar , Proyectos de Investigación , Humanos , Investigadores
8.
J Eat Disord ; 9(1): 72, 2021 Jun 16.
Artículo en Inglés | MEDLINE | ID: mdl-34134754

RESUMEN

This letter identifies the potential of qualitative eating disorder research to work within a transformative paradigm that naturalizes the state of living with an eating disorder. The number of qualitative research publications with persons living with eating disorders have increased, however, a substantive proportion of this qualitative research follows traditional research paradigms that are built upon the assumption that eating disorders signify a personal deficit. Transformative qualitative eating disorder research has potential to include those living with eating disorders in all stages of the research process to ensure that research leads to the de-stigmatization of eating disorders promoting health, wellbeing, and quality of life for persons living with eating disorders.

9.
J Appl Res Intellect Disabil ; 32(3): 719-729, 2019 May.
Artículo en Inglés | MEDLINE | ID: mdl-30793817

RESUMEN

BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.


Asunto(s)
Investigación Participativa Basada en la Comunidad/organización & administración , Discapacidad Intelectual , Personas con Discapacidades Mentales , Adulto , Femenino , Humanos , Masculino
10.
Autism Adulthood ; 1(1): 52-59, 2019 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-36600694

RESUMEN

Background: This article addresses a gap in current research by considering perceptions of gender within autistic adults raised as girls. Methods: We report on an online focus group, in which 21 individuals who had been raised as girls discussed their gender identities. This discussion was part of a larger study, involving 43 participants from eight countries. We used an emancipatory approach wherein participants set their own agenda, thereby highlighting directly that gender identity was significant for them. The discussion was open for 2 weeks, after which the transcript was analyzed using Applied Thematic Analysis. Results: Participants reported not identifying with typical presentations of the female gender for a variety of reasons, linked both to autism and to sociocultural expectations. Participants described childhoods of being a tomboy or wanting to be a boy, having difficulties conforming to gender-based social expectations and powerful identifications with their personal interests. Conclusions: Consideration is given to the ways in which autistic individuals conform to, or resist, gendered roles, as well as the implications for identity formation within autistic individuals raised as girls. The innovative emancipatory design proved effective in giving voice to a group who have had little presence within the academic and medical communities and, through its use of online platforms, in engaging a large and internationally based participant sample. This article highlights both the importance of approaching autism from an intersectional perspective that takes greater account of context, and the unique contributions that autistic individuals can make to current understandings within autism research. Lay Summary: Background:: This article tries to look at a new part of autism research. It reports on what autistic adults who were raised as girls say about their feelings in relation to their gender-whether they feel more like typical women, more like typical men, or feel differently to both.Method:: The research used online discussion groups. Forty-three individuals who had been raised as girls chose to join the group and be part of the research. Participants from eight countries decided what they would talk about. This means that they chose the topic of gender identity as one that was important to them. We analyzed the comments that people made in the discussion about gender.Results:: Most said that they did not feel like they were similar to typical women and they gave different reasons for this. Some thought it was because they were autistic and some thought it was to do with people around them putting pressure on them to be more "girly." Participants often said they had been tomboys or wanted to be a boy growing up and their personal interests were very important to them.Conclusions:: The discussion looks at how autistic people are sometimes forced to act in certain ways to fit in, and how this can make them feel confused and depressed. The research design was led by the participants and this meant that a group who have rarely been asked their opinion were able to have a say. Because the research was all online, the participant group could be larger than usual and came from all over the world. This article shows that it is important to understand a person's environment, to really understand how autism affects them. It also shows that autistic people can give important information that helps others understand them better, and the only way to get this type of information is to ask autistic people.

11.
J Appl Res Intellect Disabil ; 27(1): 3-12, 2014 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-24390972

RESUMEN

BACKGROUND: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. METHOD: A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. FINDING: Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. CONCLUSIONS: A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. BACKGROUND: Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. METHOD: The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. RESULTS: There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. CONCLUSIONS: In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.


Asunto(s)
Investigación Participativa Basada en la Comunidad , Conducta Cooperativa , Personas con Discapacidad , Discapacidad Intelectual , Investigadores , Humanos
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