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1.
Artículo en Inglés | MEDLINE | ID: mdl-31581695

RESUMEN

Addressing health disparities and promoting health equity for Roma has been a challenge. The Roma are the largest disadvantaged ethnic minority population in Europe and have been the victims of deep social and economic injustices, institutional discrimination, and structural antigypsyism over many centuries. This has resulted in a much worse health status than their non-Roma counterparts. Current strategies based on ameliorative and top-down approaches to service delivery have resulted in paradoxical effects that solidify health disparities, since they do not effectively address the problems of vulnerable Roma groups. Following a health justice approach, we present a community-based participatory action research case study generated by a community and university partnership intended to address power imbalances and build collaboration among local stakeholders. This case study involved a group of health providers, Roma residents, researchers, Roma community organizations, and other stakeholders in the Poligono Sur, a neighborhood of Seville, Spain. The case study comprises four phases: (1) identifying Roma health assets, (2) empowering Roma community through sociopolitical awareness, (3) promoting alliances between Roma and community resources/institutions, and (4) building a common agenda for promoting Roma health justice. We highlighted best practices for developing processes to influence Roma health equity in local health policy agendas.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Equidad en Salud , Política de Salud , Disparidades en Atención de Salud , Roma/psicología , Roma/estadística & datos numéricos , Justicia Social , Grupos Étnicos/psicología , Grupos Étnicos/estadística & datos numéricos , Promoción de la Salud/métodos , Humanos , Grupos Minoritarios/psicología , Grupos Minoritarios/estadística & datos numéricos , Estigma Social , España
2.
Artículo en Inglés | MEDLINE | ID: mdl-31505766

RESUMEN

Extreme summertime heat is a significant public health threat that disproportionately impacts vulnerable urban populations. Research on health impacts of climate change (including increasing intensity, duration, and frequency of hot weather) is sometimes designed and implemented without the involvement of the communities being studied, i.e., "community-placed" not "community-based." We describe how the Heatwaves, Housing, and Health: Increasing Climate Resiliency in Detroit (HHH) partnership engaged relevant communities by integrating a community-based participatory research (CBPR) approach into an existing, academic-designed research project through a steering committee of community and academic partners. Using a case study approach, we analyze program documentation, partnership evaluation questionnaires, and HHH steering committee meeting notes. We describe the CBPR process by which we successfully collected research data in Detroit during summer 2016, engaged in collaborative analysis of data, and shared results with Detroit residents. Evaluations of the partnership over 2 years show community involvement in research; enhanced capacities; success in securing new grant funding; and ways that CBPR strengthened the validity, relevance, and translation of research. Engaging communities as equal partners using CBPR, even after a study is underway, can strengthen research to understand and address the impacts of extreme heat on health and equity in urban communities.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Equidad en Salud , Ciudades , Clima , Participación de la Comunidad , Relaciones Comunidad-Institución , Vivienda , Humanos , Michigan
3.
Artículo en Inglés | MEDLINE | ID: mdl-31500126

RESUMEN

BACKGROUND: Community and patient engagement in the healthcare system and biomedical research are prerequisites for eliminating health disparities. We conducted a "listening tour" to enhance our understanding of multilevel factors associated with community trust. METHODS: Using community-based participatory research (CBPR) methods, we conducted a phenomenological qualitative study. "Town-hall" style discussions were held at nine sites across an urban, Midwestern city. We recruited adults (N = 130) via community networks, social media, flyers, and word-of-mouth. Demographic assessments were self-administered and listening tour sessions were conducted by trained moderators. Themes were framed within the social ecological model (SEM; intrapersonal, interpersonal, institutional, community, and policy levels). RESULTS: Participants were mostly female (68%), African American (80%), had health coverage (97%) and were diagnosed with a chronic health condition (71%). The overarching theme was sociodemographic differences in distrust, such that African Americans and deaf/hearing impaired participants perceived disparities in healthcare, a lower quality of care, and skepticism about biomedical research, relative to Whites. CONCLUSIONS: The depth of distrust for healthcare providers, systems, and researchers in underserved communities remains strong and complex. Findings highlight the need to understand the lived experiences of community members, and how distrust is maintained. Multilevel interventions to increase trust and the accrual of underrepresented populations into clinical trials are needed.


Asunto(s)
Disparidades en Atención de Salud , Confianza , Población Urbana , Adulto , Afroamericanos , Anciano , Anciano de 80 o más Años , Investigación Biomédica , Enfermedad Crónica , Investigación Participativa Basada en la Comunidad/métodos , Grupo de Ascendencia Continental Europea , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Encuestas y Cuestionarios
4.
BMC Res Notes ; 12(1): 616, 2019 Sep 23.
Artículo en Inglés | MEDLINE | ID: mdl-31547837

RESUMEN

OBJECTIVE: To partner with and understand the health of Somali Bantu refugee women, small group sessions were designed and conducted using a community-based collaborative action research (CBCAR) approach. Health topics identified by this community were presented in 42 sessions with eleven women. Follow-up individual interviews with the women were used to ask questions about health experiences and plan for future health education. The objective of this qualitative study was to provide refugee women with knowledge to help them adjust to new health challenges in the United States, and to share personal narratives in a safe environment. RESULTS: The process of sharing health information with the women resulted in a collaborative exchange of culture and community. Individual interviews allowed women to voice their opinions outside of the influence of their community elders. CBCAR is an effective tool to involve refugee communities, and other populations small in number, in addressing their unique health challenges. Results from this study demonstrated that small group sessions and a CBCAR approach can be effective in sharing knowledge within small communities of refugee women. Findings from the study will assist in the future planning of health education programs for refugee women and their families in this community.


Asunto(s)
Asistencia Sanitaria Culturalmente Competente/métodos , Educación en Salud/ética , Refugiados/psicología , Adulto , Investigación Participativa Basada en la Comunidad/métodos , Asistencia Sanitaria Culturalmente Competente/ética , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Kansas , Investigación Cualitativa , Somalia , Estados Unidos
5.
An Bras Dermatol ; 94(3): 298-303, 2019 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-31365658

RESUMEN

BACKGROUND: Hidradenitis suppurativa is a complex and infrequent autoinflammatory disease that impacts on quality of life. Its pathogenesis is not fully understood, which limits the development of curative treatments. OBJECTIVES: To evaluate clinical and quality of life aspects of hidradenitis suppurativa patients from a social group on the Internet. METHODS: A cross-sectional, Internet-based survey study among participants in a discussion group (Facebook) of individuals with hidradenitis suppurativa. Patients were asked to answer a questionnaire about clinical-demographic aspects and quality of life (DLQI-BRA). RESULTS: A total of 390 individuals agreed to participate in the study, 82% of them female, median age (p25-p75), of 31 (25-37) years old, disease onset at 15 (13-23) years, family member affected in 20% of cases, overweight (BMI 29 [25-33]) kg/m2 and severe impact on quality of life (DLQI 20 [13-25]). Regarding Hurley's classification, the participants provided information that enabled classification into: I (19%), II (52%) and III (29%). More severe cases were associated with males (OR = 1.69), higher weight (BMI: OR = 1.03) non-white color (OR = 1.43) and higher frequency of other autoinflammatory diseases (OR = 1.37). STUDY LIMITATIONS: Voluntary adherence survey with self-completion of the questionnaire by 390 from about 1600 group members. CONCLUSIONS: Hidradenitis suppurativa patients who participated in a social network group had onset of the disease after puberty, with a predominance in females and overweight people, with great impact on the quality of life.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Hidradenitis Supurativa/psicología , Calidad de Vida , Medios de Comunicación Sociales , Adulto , Anciano , Índice de Masa Corporal , Comorbilidad , Estudios Transversales , Femenino , Hidradenitis Supurativa/terapia , Humanos , Internet , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Factores Sexuales , Encuestas y Cuestionarios
6.
BMC Med Ethics ; 20(1): 54, 2019 07 27.
Artículo en Inglés | MEDLINE | ID: mdl-31351474

RESUMEN

BACKGROUND: The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. DISCUSSION: In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. CONCLUSIONS: While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged.


Asunto(s)
Control de Enfermedades Transmisibles , Participación de la Comunidad , Investigación Participativa Basada en la Comunidad/ética , Tecnología de Genética Dirigida/ética , Consentimiento Informado , Animales , Control de Enfermedades Transmisibles/métodos , Investigación Participativa Basada en la Comunidad/métodos , Investigación Participativa Basada en la Comunidad/normas , Culicidae/genética , Dengue/prevención & control , Transmisión de Enfermedad Infecciosa/prevención & control , Tecnología de Genética Dirigida/métodos , Humanos , Consentimiento Informado/ética , Consentimiento Informado/normas , Control de Mosquitos/ética , Control de Mosquitos/métodos , Mosquitos Vectores/genética , Ensayos Clínicos Controlados Aleatorios como Asunto/ética , Confianza , Wolbachia
7.
Women Birth ; 32(5): 460-465, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-31303540

RESUMEN

BACKGROUND: Approaches to health promotion that are collaborative, support strengths inherent in Aboriginal and Torres Strait Islander culture, and demonstrate respect and understanding for individual communities, have achieved the most positive outcomes to date. AIM: To illustrate how the implementation and evaluation of a safe infant sleep health promotion strategy was facilitated by embedding recognised best practice principles for the conduct of research with Aboriginal and Torres Strait Islander peoples and communities. METHODS: The Pepi-Pod® Program was introduced across rural, remote and metropolitan locations in Queensland between 2013 and 2017. This case study discusses the partnership between the Pepi-Pod® Program and one community-controlled maternal and child health service that employed an Aboriginal Health Worker led model of maternal and child health care for remote regions of Queensland. FINDINGS: Best practice principles were embedded within the program design and adaptation, and in the approach to community consultation prior to program implementation. Collaborative partnerships based on trust, which established stakeholder expectations through transparent communication processes, together with effective engagement in achieving program goals, led to the implementation of this evidence-based health promotion initiative as intended. Consideration for locally relevant and culturally competent program delivery was key to success. The integrity of the program was maintained and embedded into ongoing service delivery. CONCLUSIONS: Through adherence to best practice principles for research with Aboriginal and Torres Strait Islander communities, implementation and evaluation of health promotion programs can be conducted in mutually acceptable, feasible and sustainable ways that develop capacity within participating health services.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Asistencia Sanitaria Culturalmente Competente , Medicina Basada en la Evidencia , Promoción de la Salud/métodos , Servicios de Salud Materno-Infantil , Grupo de Ascendencia Oceánica , Australia , Investigación Participativa Basada en la Comunidad/ética , Femenino , Servicios de Salud del Indígena , Humanos , Lactante , Queensland
8.
BMC Med Ethics ; 20(1): 50, 2019 07 16.
Artículo en Inglés | MEDLINE | ID: mdl-31311526

RESUMEN

BACKGROUND: Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study. METHODS: Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. RESULTS: The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. CONCLUSION: The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.


Asunto(s)
Comités Consultivos , Fármacos Anti-VIH/uso terapéutico , Participación de la Comunidad , Accesibilidad a los Servicios de Salud/ética , Adulto , Anciano , Investigación Participativa Basada en la Comunidad/ética , Investigación Participativa Basada en la Comunidad/métodos , Investigación Participativa Basada en la Comunidad/organización & administración , Femenino , Grupos Focales , Infecciones por VIH/tratamiento farmacológico , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Adulto Joven
9.
Am J Public Health ; 109(8): 1131-1137, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31219715

RESUMEN

Objectives. To identify the impact of a strengths-focused HIV prevention program among high-risk heterosexual Black men. Methods. Barbershops in Brooklyn, New York, neighborhoods with high rates of heterosexually transmitted HIV were randomized to the intervention or an attention control program. Men were recruited from barbershops between 2012 and 2016 and participated in a single small group, peer-led session focused on HIV risk reduction skills and motivation, community health empowerment, and identification of personal strengths and communication skills. The outcome was defined as 1 or more acts of condomless anal or vaginal sex in the preceding 90 days at a 6-month interview. Results. Fifty-three barbershops (24 intervention, 29 control) and 860 men (436 intervention, 424 control) were recruited; follow-up was completed by 657 participants (352 intervention, 305 control). Intervention exposure was associated with a greater likelihood of no condomless sex (64.4%) than control group participation (54.1%; adjusted odds ratio = 1.61; 95% confidence interval = 1.05, 2.47). Conclusions. Program exposure resulted in reduced sexual risk behaviors, and the program was acceptable for administration in partnership with barbershops. Public Health Implications. Dissemination of similar programs could improve public health in communities with high rates of HIV attributable to heterosexual transmission.


Asunto(s)
Afroamericanos/psicología , Investigación Participativa Basada en la Comunidad/métodos , Infecciones por VIH/prevención & control , Promoción de la Salud/métodos , Heterosexualidad/psicología , Conducta de Reducción del Riesgo , Adulto , Humanos , Masculino , Ciudad de Nueva York
10.
Geriatr Gerontol Int ; 19(7): 660-666, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-31083797

RESUMEN

AIM: To evaluate the effect of an interprofessional collaboration (IPC) promotion program among community healthcare professionals. METHODS: A non-randomized controlled study was carried out. Study participants were home healthcare-related professionals in a suburban city near Tokyo; program participants were compared with non-participants. The program consisted of two workshops each 2 h long and 4 months apart. The first workshop focused on developing a community resource map, and discussing community strengths and features. The second focused on examining a case of transitional care from hospital to home. Mail surveys were carried out before the first workshop and 6 months after. The IPC level was examined using an established seven-domain scale. Analysis of covariance was used to examine the program effect by comparing baseline and 6-month data in the two groups. RESULTS: Altogether, 213 professionals participated (intervention: n = 141 vs control: n = 72); approximately 60% were women, with a mean age of 45.9 ± 10.2 years. There were significant between-group differences in baseline IPC score, age, type of profession and number of other educational opportunities. After adjusting for these variables, the IPC domains of "familiarity" and "meeting and talking" improved significantly in the intervention group as compared with the control group (P = 0.011 and 0.036, respectively). When the intervention group was split in two (two-time vs one-time participants), the improvement at 6 months was not significantly different between two- and one-time participants. CONCLUSIONS: It is suggested that our program is effective to improve the IPC level; one-time participation might be enough to have expected improvement. Geriatr Gerontol Int 2019; 19: 660-666.


Asunto(s)
Educación/métodos , Servicios de Atención de Salud a Domicilio/normas , Colaboración Intersectorial , Grupo de Atención al Paciente/normas , Cuidado de Transición/organización & administración , Adulto , Investigación Participativa Basada en la Comunidad/métodos , Femenino , Humanos , Comunicación Interdisciplinaria , Relaciones Interprofesionales , Japón , Masculino , Persona de Mediana Edad , Evaluación de Programas y Proyectos de Salud , Mejoramiento de la Calidad
11.
An. bras. dermatol ; 94(3): 298-303, May-June 2019. tab, graf
Artículo en Inglés | LILACS | ID: biblio-1011122

RESUMEN

Abstract: Background: Hidradenitis suppurativa is a complex and infrequent autoinflammatory disease that impacts on quality of life. Its pathogenesis is not fully understood, which limits the development of curative treatments. Objectives: To evaluate clinical and quality of life aspects of hidradenitis suppurativa patients from a social group on the Internet. Methods: A cross-sectional, Internet-based survey study among participants in a discussion group (Facebook) of individuals with hidradenitis suppurativa. Patients were asked to answer a questionnaire about clinical-demographic aspects and quality of life (DLQI-BRA). Results: A total of 390 individuals agreed to participate in the study, 82% of them female, median age (p25-p75), of 31 (25-37) years old, disease onset at 15 (13-23) years, family member affected in 20% of cases, overweight (BMI 29 [25-33]) kg/m2 and severe impact on quality of life (DLQI 20 [13-25]). Regarding Hurley's classification, the participants provided information that enabled classification into: I (19%), II (52%) and III (29%). More severe cases were associated with males (OR = 1.69), higher weight (BMI: OR = 1.03) non-white color (OR = 1.43) and higher frequency of other autoinflammatory diseases (OR = 1.37). Study limitations: Voluntary adherence survey with self-completion of the questionnaire by 390 from about 1600 group members. Conclusions: Hidradenitis suppurativa patients who participated in a social network group had onset of the disease after puberty, with a predominance in females and overweight people, with great impact on the quality of life.


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Anciano , Calidad de Vida , Hidradenitis Supurativa/psicología , Investigación Participativa Basada en la Comunidad/métodos , Medios de Comunicación Sociales , Índice de Severidad de la Enfermedad , Índice de Masa Corporal , Comorbilidad , Factores Sexuales , Estudios Transversales , Encuestas y Cuestionarios , Hidradenitis Supurativa/terapia , Internet
12.
BMC Res Notes ; 12(1): 151, 2019 Mar 18.
Artículo en Inglés | MEDLINE | ID: mdl-30885271

RESUMEN

OBJECTIVE: In Sub-Saharan Africa, there is an increase in trypanosome non-susceptibility to multiple trypanocides, but limited information on judicious trypanocide use is accessible to smallholder farmers and agricultural stakeholders in disease endemic regions, resulting in widespread multi-drug resistance. Huge economic expenses and the laborious nature of extensive field studies have hindered collection of the requisite large-scale prospective datasets required to inform disease management. We examined the efficacy of community-led data collection strategies using smartphones by smallholder farmers to acquire robust datasets from the trypanosomiasis endemic Shimba hills region in Kenya. We used Open Data Kit, an open-source smartphone application development software, to create a data collection App. RESULTS: Our study provides proof of concept for the viability of using smartphone Apps to remotely collect reliable large-scale information from smallholder farmers and veterinary health care givers in resource poor settings. We show that these datasets can be reliably collated remotely, analysed, and the findings can inform policies that improve farming practices and economic wellbeing while restricting widespread multi-drug resistance. Moreover, this strategy can be used to monitor and manage other infectious diseases in other rural, resource poor settings.


Asunto(s)
Enfermedades de los Bovinos/epidemiología , Investigación Participativa Basada en la Comunidad/métodos , Recolección de Datos/métodos , Monitoreo Epidemiológico , Aplicaciones Móviles , Tripanosomiasis Africana/epidemiología , Tripanosomiasis Africana/veterinaria , Adulto , Animales , Bovinos , Investigación Participativa Basada en la Comunidad/normas , Recolección de Datos/normas , Agricultores , Femenino , Humanos , Kenia , Masculino , Proyectos Piloto , Prueba de Estudio Conceptual
13.
Cultur Divers Ethnic Minor Psychol ; 25(1): 44-54, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30714766

RESUMEN

OBJECTIVES: The foundational role culture and Indigenous knowledge (IK) occupy within community intervention in American Indian and Alaska Native (AIAN) communities is explored. To do this, we define community or complex interventions, then critically examine ways culture is translated into health interventions addressing AIAN disparities in existing programs and research initiatives. We then describe an Indigenous intervention based in the cultural logic of its contexts, as developed by Alaska Native communities. Yup'ik coauthors and knowledge keepers provided their critical and theoretical perspectives and understandings to the overall narrative, constructing from their IK system an argument that culture is prevention. CONCLUSIONS: The intervention, the Qungasvik (phonetic: koo ngaz vik; "tools for life") intervention, is organized and delivered through a Yup'ik Alaska Native process the communities term qasgiq (phonetic: kuz gik; "communal house"). We describe a theory of change framework built around the qasgiq model and explore ways this Indigenous intervention mobilizes aspects of traditional Yup'ik cultural logic to deliver strengths-based interventions for Yup'ik youth. This framework encompasses both an IK theory-driven intervention implementation schema and an IK approach to knowledge production. This intervention and its framework provide a set of recommendations to guide researchers and Indigenous communities who seek to create Indigenously informed and locally sustainable strategies for the promotion of health and well-being. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Asunto(s)
Conducta del Adolescente/psicología , Nativos de Alaska/psicología , Alcoholismo/prevención & control , Investigación Participativa Basada en la Comunidad/métodos , Suicidio/prevención & control , Adolescente , Conducta del Adolescente/etnología , Desarrollo del Adolescente , Alcoholismo/etnología , Femenino , Humanos , Factores Protectores , Trastornos Relacionados con Sustancias/prevención & control , Suicidio/etnología , Traducción
14.
Cultur Divers Ethnic Minor Psychol ; 25(1): 113-122, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30714773

RESUMEN

OBJECTIVE: Autism spectrum disorder (ASD) is underidentified and misidentified in the Latino community, and numerous barriers limit this community's ability to access quality health care for ASD. Appreciative inquiry/boot camp translation (AI/BCT) is a novel method of community engagement that can be used within community-based participatory research partnerships. AI/BCT uses qualitative methods to uncover strategies that the community is already successfully using and develops actionable messages to increase the use of those strategies throughout the community. We describe this method and outline how it is likely to be more effective at reducing disparities related to ASDs in the Latino community than traditional methods. CONCLUSION: AI/BCT is a promising method of community engagement that is responsive to cultural differences. It is a strength-based approach focused on increasing the use of strategies that already work within the community. Therefore, it has the potential to reduce health disparities in the Latino community who have loved ones with autism ASD much more rapidly than traditional methods of inquiry. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Asunto(s)
Trastorno del Espectro Autista/etnología , Disparidades en Atención de Salud/etnología , Hispanoamericanos/psicología , Trastorno del Espectro Autista/diagnóstico , Investigación Participativa Basada en la Comunidad/métodos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Atención Primaria de Salud/estadística & datos numéricos , Factores de Riesgo
15.
Eval Program Plann ; 73: 176-186, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30665124

RESUMEN

Researchers worldwide are increasingly reporting the societal impact of their research as part of national research productivity assessments. However, the challenges they encounter in developing their impact case studies against specified government assessment criteria and how pitfalls can be mitigated are not reported. This paper examines the key steps taken to develop an Aboriginal Family Wellbeing (FWB) empowerment research impact case study in the context of an Australian Research Council (ARC) pilot research impact assessment exercise and the challenges involved in applying the ARC criteria. The requirement that researchers demonstrate how their institutions support them to conduct impactful research has the potential to create supportive environments for researchers to be more responsive to the needs of users outside academia. However, the 15-year reference period for the associated research underpinning the reported impact and the focus on researcher's current institutional affiliation constitute potential constraints to demonstrating the true impact of research. For researchers working with Indigenous people, relationships that build over long periods of time, irrespective of university affiliation, are critical to conducting impactful research. A more open-ended time-frame, with no institutional restrictions for the 'associated research' provides the best opportunity to demonstrate the true benefits of research not only for Indigenous people but for Australian society more broadly.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Salud de la Familia/etnología , Grupo de Ascendencia Oceánica , Evaluación de Programas y Proyectos de Salud/métodos , Australia , Investigación Participativa Basada en la Comunidad/normas , Relaciones Comunidad-Institución , Humanos , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud/normas
16.
Qual Health Res ; 29(9): 1324-1333, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-30600758

RESUMEN

Gypsy, Roma, and Traveller people are marginalized worldwide and experience severe health inequalities, even in comparison to other ethnic minority groups. While diverse and hard to categorize, these communities are highly cohesive and members have a strong sense of identity as a group apart from the majority population. Researchers commonly experience challenges in accessing, recruiting, and retaining research participants from these communities, linked to their outsider status, insular nature, and history of discrimination. In this article, the challenges and the opportunities of engaging Gypsies, Roma, and Travellers in a multicenter qualitative research project are discussed. The management of public involvement and community engagement in this U.K.-based project provides insights into conducting research effectively with ethnically and linguistically diverse communities, often considered to be "hard to reach."


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Grupos Étnicos/psicología , Selección de Paciente , Roma/psicología , Migrantes/psicología , Adulto , Anciano , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Política , Investigación Cualitativa , Proyectos de Investigación , Reino Unido
17.
Gerontologist ; 59(3): 538-548, 2019 05 17.
Artículo en Inglés | MEDLINE | ID: mdl-29401222

RESUMEN

BACKGROUND AND OBJECTIVES: A growing body of work suggests that co- or peer-research may contribute to understanding the complex health and social problems experienced in later life. Yet, only a limited number of studies have involved older persons as partners in the research process. Moreover, in conflict with the philosophy of participatory research, the views of those acting as coresearchers tend to be ignored. This paper gives an "insider" account of the process of coresearch, drawing upon the experiences of older people trained to undertake a community-based research project. RESEARCH DESIGN AND METHODS: Eighteen older adults were recruited and trained as coresearchers to take a leading role in a study aimed at developing "age-friendly" communities in Manchester, UK. The coresearchers completed 68 interviews with residents aged 60 years and over who were experiencing isolation within their neighborhood. The findings are based upon four reflection meetings held with the coresearchers, all of which were transcribed with thematic analysis conducted using Atlas.ti. RESULTS: Coresearchers identified a range of advantages associated with the coresearch approach, these linked to the recruitment of participants, quality of data, potential for social change as well as personal benefits. They also identified ethical, methodological, and practical issues encountered during the research. DISCUSSION AND IMPLICATIONS: The study demonstrates the contribution of coresearch for expanding methodological diversity, accessing seldom heard populations, and utilizing the skills and resources of older people. The research also highlights the opportunities for partnerships between older people and local stakeholders to facilitate community change and social action.


Asunto(s)
Anciano/psicología , Investigación Participativa Basada en la Comunidad/métodos , Grupo Paritario , Educación , Inglaterra , Humanos , Masculino , Persona de Mediana Edad , Características de la Residencia , Medio Social
18.
Qual Health Res ; 29(2): 270-278, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30101661

RESUMEN

In-depth interviews allow for rich exploration of stakeholders' experiences. Preparation for in-depth interviews generally consists of literature reviews and researchers' review of their own culture and understanding of a topic. We supplemented these strategies with serial "ethnographic interviews" with a single community leader to enhance our preparation for community-based in-depth interviews with Latina, immigrant, Spanish-speaking mothers and to facilitate stakeholder engagement in a research project. After an extensive literature review, we conducted a series of four 1-hour interviews with a key informant in preparation for individual in-depth interviews with 12 parents. The ethnographic interviews with the community leader provided insight into environmental context, cultural categories, and stakeholder priorities, which helped shape the research question, in-depth interview guide, sampling strategy, and interpretive analytic process. We found that ethnographic interviews can provide critical insights for preparing in-depth interview guides and can enhance the information gained while facilitating meaningful stakeholder engagement.


Asunto(s)
Antropología Cultural/métodos , Investigación Participativa Basada en la Comunidad/métodos , Emigrantes e Inmigrantes/psicología , Hispanoamericanos/psicología , Madres/psicología , Características Culturales , Ambiente , Femenino , Humanos , Entrevistas como Asunto , Liderazgo , Investigación Cualitativa , Proyectos de Investigación
19.
J Nurs Care Qual ; 34(3): 273-278, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30198945

RESUMEN

BACKGROUND: Patient safety-focused research may be strengthened by the inclusion of patients and family members in research design; yet, published methodologies for doing so are scarce. PURPOSE: This study engaged patients and families in research design of an intervention to increase patient/family engagement, with reduction of harm in hospitalized patients. METHODS: The study design team convened a Patient Safety Advisory Panel to explore potential testable interventions to increase patient/family engagement with safety. They explored the preferred intervention, Speak Up-My Advocate for Patient Safety (MAPS), through multistakeholder focus groups. RESULTS: Participants emphasized the importance of including patient/family when designing interventions. Regarding the Speak Up-MAPS intervention, perceptions from stakeholders were mixed, including the value and potential complexity, role confusion, and cost of the proposed advocate role. CONCLUSION: Intentional inclusion of the patient/family in research is important and practical. Both strengths and challenges of the proposed intervention were identified, indicating the need for further study.


Asunto(s)
Reducción del Daño , Hospitalización/estadística & datos numéricos , Seguridad del Paciente/normas , Investigación Participativa Basada en la Comunidad/métodos , Investigación Participativa Basada en la Comunidad/normas , Familia/psicología , Grupos Focales/métodos , Humanos , Seguridad del Paciente/estadística & datos numéricos , Pacientes/psicología , Investigación Cualitativa
20.
Osteoporos Int ; 30(2): 507-511, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30191258

RESUMEN

There is limited research which examines health concerns of individuals with osteogenesis imperfecta (OI). Discussion groups with leaders of the adult OI community identified a broad range of medical priorities beyond fractures and brittle bones. Our work underscores the need to include patient-reported outcomes in rare bone disease research. INTRODUCTION: Osteogenesis imperfecta (OI) is a rare genetic disorder affecting collagen protein leading to brittle bones and a number of other medical complications. To date, there is limited research which examines the life-long process of aging with this rare disease, much less the perspective of individuals with OI. METHODS: In order to explore and prioritize health concerns that adults with OI feel have been inadequately addressed in health care and research, investigators held discussions with leaders from the global adult OI community. The meetings were held in August 2017 at the 13th International Conference on OI in Oslo, Norway as part of the preconference seminar "Patient Participation in OI Research". Investigators were part of the Brittle Bone Disease Consortium (BBDC), a multicenter research program devoted to the study of OI, and their focus was on patient-reported outcomes (PRO). RESULTS: Participants noted that while fractures and brittle bones are the most common feature of OI, a number of body systems are under-studied in this disorder. They particularly emphasized breathing, hearing, and the effects of aging as primary concerns that researchers and physicians may not fully understand or address. Other areas included pain, gastrointestinal problems, mental health, nutrition, menopause/pregnancy, and basilar invagination. Participants also emphasized that they must be informed of study results. They underscored that outcome measures incorporated into future drug trials must look beyond fractures and consider the whole patient. CONCLUSIONS: This work will help guide the incorporation of PROs into the next phase of the BBDC Natural History Study of OI and underscores the importance of including PROs in the study of rare diseases.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Osteogénesis Imperfecta/psicología , Enfermedades Raras/psicología , Adulto , Envejecimiento , Investigación Biomédica/métodos , Investigación Participativa Basada en la Comunidad/métodos , Femenino , Fracturas Espontáneas/etiología , Fracturas Espontáneas/psicología , Pérdida Auditiva/etiología , Pérdida Auditiva/psicología , Humanos , Masculino , Osteogénesis Imperfecta/complicaciones , Osteogénesis Imperfecta/rehabilitación , Medición de Resultados Informados por el Paciente , Psicometría , Calidad de Vida , Enfermedades Raras/complicaciones , Enfermedades Raras/rehabilitación , Enfermedades Respiratorias/etiología , Enfermedades Respiratorias/psicología
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