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2.
Adv Exp Med Biol ; 1171: 127-135, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31823244

RESUMEN

Biomedical research is a diverse and rapidly evolving subject area. The research and development that takes place as part of the field is aimed at understanding subjects such as diseases, disease progression, their treatment(s), treatment impact on patients as well as the general increase in understanding of the advancement of health sciences. The money and time invested in research is vast and discovery of novel data and production of publication(s) is seen as success. However in today's connected world scientists have to do more to ensure that their research and the impact thereof, is better communicated to the wider audiences. One of the major means to do this is via public engagement, of which there are many ways to achieve this. Advances in technology have led to interactive and immersive visual technologies that enable the next phase of public engagement to be available to a greater audience.


Asunto(s)
Investigación Biomédica , Participación de la Comunidad , Investigación Biomédica/educación , Participación de la Comunidad/métodos , Humanos , Tecnología/tendencias
3.
BMC Health Serv Res ; 19(1): 710, 2019 Oct 17.
Artículo en Inglés | MEDLINE | ID: mdl-31623612

RESUMEN

BACKGROUND: Community dialogues have been widely used as a method for community engagement and participation to cover a broad range of areas. However, there has been limited documentation and evaluation of the process, particularly as a method towards achieving family planning and contraception (FP/C) programme goals. As part of the development of an intervention package aimed at increasing community and health care provider (HCP) participation in the provision of FP/C, feasibility testing of the intervention approach (a community dialogue between communities and health facilities) was carried out. Our findings offer a systematic description and evaluation of the community dialogue process, with key recommendations towards future implementation. METHODS: The dialogue was evaluated in three ways: 1) through participant observation during the community dialogue, 2) via a standardised feasibility testing tick-list for all observers of the dialogue, and 3) through three focus group discussions (FGDs) consisting of different groups of stakeholders who participated in the community dialogue. In total, 28 community members, HCPs, and key stakeholders attended the community dialogue (22 females, 6 males). Twenty-seven of the community dialogue participants participated in one of 3 FGDs held after the dialogue. Six evaluators assessed feasibility of the dialogue process. RESULTS: There was good attendance, representation and participation amongst community and provider sectors based on the participant observations using the standardized feasibility check-list. The community dialogue process received positive feedback in the FGDs and was demonstrated to be feasible and acceptable. Key factors contributing to the success of the community dialogue included a skilled facilitator, good representation of participants, establishing ground rules, good timekeeping, and using a Theory of Change to facilitate goal identification and dialogue. Issues to consider are the underlying power differentials related to age, profession and gender which caused initial feelings of anxiety amongst some participants. CONCLUSIONS: Our formative findings offer a systematic description and evaluation of a community dialogue process with key recommendations that may be considered when constituting similar community dialogues in the future.


Asunto(s)
Participación de la Comunidad/métodos , Anticoncepción , Servicios de Planificación Familiar/organización & administración , Estudios de Factibilidad , Femenino , Grupos Focales , Humanos , Masculino , Evaluación de Programas y Proyectos de Salud
4.
Mar Pollut Bull ; 145: 271-277, 2019 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-31590787

RESUMEN

There is considerable scientific and societal concern about plastic pollution, which has resulted in citizen science projects to study the scale of the issue. Citizen science is a cost-effective way to gather data over a large geographical range while simultaneously raising public awareness on the problem. Because the experiences of researchers involved in these projects are not yet adequately covered, this paper presents the findings from ten semi-structured qualitative interviews with researchers leading a citizen science project on micro- or macroplastics. Our results show it is important to specify the goal(s) of the project and that expertise on communication and data science is needed. Furthermore, simple protocols, quality control, and engagement with volunteers and the public are key elements for successful projects. From these results, a framework with recommendations was drafted, which can be used by anyone who wants to develop or improve citizen science projects.


Asunto(s)
Participación de la Comunidad , Plásticos , Contaminantes Químicos del Agua , Participación de la Comunidad/métodos , Recolección de Datos , Humanos , Control de Calidad , Voluntarios
5.
Lancet ; 394(10205): 1231-1242, 2019 10 05.
Artículo en Inglés | MEDLINE | ID: mdl-31488369

RESUMEN

BACKGROUND: Hypertension is the leading cause of cardiovascular disease globally. Despite proven benefits, hypertension control is poor. We hypothesised that a comprehensive approach to lowering blood pressure and other risk factors, informed by detailed analysis of local barriers, would be superior to usual care in individuals with poorly controlled or newly diagnosed hypertension. We tested whether a model of care involving non-physician health workers (NPHWs), primary care physicians, family, and the provision of effective medications, could substantially reduce cardiovascular disease risk. METHODS: HOPE 4 was an open, community-based, cluster-randomised controlled trial involving 1371 individuals with new or poorly controlled hypertension from 30 communities (defined as townships) in Colombia and Malaysia. 16 communities were randomly assigned to control (usual care, n=727), and 14 (n=644) to the intervention. After community screening, the intervention included treatment of cardiovascular disease risk factors by NPHWs using tablet computer-based simplified management algorithms and counselling programmes; free antihypertensive and statin medications recommended by NPHWs but supervised by physicians; and support from a family member or friend (treatment supporter) to improve adherence to medications and healthy behaviours. The primary outcome was the change in Framingham Risk Score 10-year cardiovascular disease risk estimate at 12 months between intervention and control participants. The HOPE 4 trial is registered at ClinicalTrials.gov, NCT01826019. FINDINGS: All communities completed 12-month follow-up (data on 97% of living participants, n=1299). The reduction in Framingham Risk Score for 10-year cardiovascular disease risk was -6·40% (95% CI 8·00 to -4·80) in the control group and -11·17% (-12·88 to -9·47) in the intervention group, with a difference of change of -4·78% (95% CI -7·11 to -2·44, p<0·0001). There was an absolute 11·45 mm Hg (95% CI -14·94 to -7·97) greater reduction in systolic blood pressure, and a 0·41 mmol/L (95% CI -0·60 to -0·23) reduction in LDL with the intervention group (both p<0·0001). Change in blood pressure control status (<140 mm Hg) was 69% in the intervention group versus 30% in the control group (p<0·0001). There were no safety concerns with the intervention. INTERPRETATION: A comprehensive model of care led by NPHWs, involving primary care physicians and family that was informed by local context, substantially improved blood pressure control and cardiovascular disease risk. This strategy is effective, pragmatic, and has the potential to substantially reduce cardiovascular disease compared with current strategies that are typically physician based. FUNDING: Canadian Institutes of Health Research; Grand Challenges Canada; Ontario SPOR Support Unit and the Ontario Ministry of Health and Long-Term Care; Boehringer Ingelheim; Department of Management of Non-Communicable Diseases, WHO; and Population Health Research Institute. VIDEO ABSTRACT.


Asunto(s)
Enfermedades Cardiovasculares/prevención & control , Participación de la Comunidad/métodos , Hipertensión/complicaciones , Anciano , Colombia , Femenino , Humanos , Hipertensión/tratamiento farmacológico , Hipertensión/prevención & control , Hipertensión/terapia , Malasia , Masculino , Conducta de Reducción del Riesgo
6.
Bull World Health Organ ; 97(8): 523-533A, 2019 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-31384071

RESUMEN

Objective: To evaluate the long-term impact of a community-led total sanitation campaign in rural India. Methods: Local organizations in Odisha state, India worked with researchers to evaluate a community-led total sanitation campaign, which aimed to increase the demand for household latrines by raising awareness of the social costs of poor sanitation. The intervention ran from February to March 2006 in 20 randomly-selected villages and 20 control villages. Within sampled villages, we surveyed a random subset of households (around 28 households per village) at baseline in 2005 and over the subsequent 10-year period. We analysed changes in latrine ownership, latrine functionality and open defecation among approximately 1000 households. We estimated linear probability models that examined differences between households in intervention and control villages in 2006, 2010 and 2016. Findings: In 2010, 4 years after the intervention, ownership of latrines was significantly higher (29.3 percentage points; 95% confidence interval, CI: 17.5 to 41.2) and open defecation was significantly lower (-6.8 percentage points; 95% CI: -13.1 to -1.0) among households in intervention villages, relative to controls. In 2016, intervention households continued to have higher rates of ever owning a latrine (26.3 percentage points; 95% CI: 20.9 to 31.8). However, latrine functionality and open defecation were no longer different across groups, due to both acquisition of latrines by control households and abandonment and deterioration of latrines in intervention homes. Conclusion: Future research should investigate how to maintain and rehabilitate latrines and how to sustain long-term behaviour change.


Asunto(s)
Participación de la Comunidad/métodos , Promoción de la Salud/métodos , Población Rural , Saneamiento/métodos , Cuartos de Baño/estadística & datos numéricos , Defecación , Conocimientos, Actitudes y Práctica en Salud , Humanos , India , Pobreza , Características de la Residencia
7.
Health Res Policy Syst ; 17(1): 71, 2019 Jul 22.
Artículo en Inglés | MEDLINE | ID: mdl-31331334

RESUMEN

As many developed health systems grapple with the reorientation of their systems to those that are commissioning led, consumer engagement has emerged as an important theme. Despite many governments asserting the importance of consumer engagement in commissioning, an evidence base is yet to be developed to support this approach. This paper identifies the challenges and gaps in the literature relating to consumer engagement and commissioning, before setting out five potential solutions to these challenges. Ultimately, consumer engagement needs clarity of purpose and any approach should be tailored to context. Effective client involvement needs time and investment. To embark on such a process without this effort can be counterproductive.


Asunto(s)
Participación de la Comunidad/métodos , Prestación de Atención de Salud/organización & administración , Prioridades en Salud/organización & administración , Necesidades y Demandas de Servicios de Salud/organización & administración , Humanos , Participación del Paciente , Calidad de la Atención de Salud/organización & administración
8.
Malar J ; 18(1): 245, 2019 Jul 17.
Artículo en Inglés | MEDLINE | ID: mdl-31315631

RESUMEN

BACKGROUND: In light of increasing complexity of identifying and treating malaria cases in low transmission settings, operational solutions are needed to increase effective delivery of interventions. Community engagement (CE) is at the forefront of this conversation given the shift toward creating local and site-specific solutions. Malaria programmes often confuse CE with providing information to the community or implementing community-based interventions. This study seeks to expand on CE approaches for malaria by looking to a variety of health and development programmes for lessons that can be applied to malaria elimination. METHODS: Qualitative data was collected from key informant interviews and community-based focus group discussions. Manual analysis was conducted with a focus on key principles, programme successes and challenges, the operational framework, and any applicable results. RESULTS: Ten programmes were included in the analysis: Ebola, HIV/Hepatitis C, Guinea worm, malaria, nutrition, and water, sanitation and hygiene. Seven focus group discussions (FGDs) with 69 participants, 49 key informant (KI) interviews with programme staff, and 7 KI interviews with thought leaders were conducted between October-April 2018. Participants discussed the critical role that village leaders and community health workers play in CE. Many programmes stated understanding community priorities is key for CE and that CE should be proactive and iterative. A major theme was prioritizing bi-directional interpersonal communication led by local community health workers. Programmes reported that measuring CE is difficult, particularly since CE is ongoing and fluid. CONCLUSIONS: Results overwhelmingly suggest that CE must be an iterative process that relies on early involvement, frequent feedback and active community participation to be successful. Empowering districts and communities in planning and executing community-based interventions is necessary. Communities affected by the disease will ultimately achieve malaria elimination. For this to happen, the community itself must define, believe in, and commit to strategies to interrupt transmission.


Asunto(s)
Participación de la Comunidad/psicología , Erradicación de la Enfermedad/métodos , Malaria/prevención & control , África del Sur del Sahara , Asia , Belice , Agentes Comunitarios de Salud/estadística & datos numéricos , Participación de la Comunidad/métodos , Haití , Humanos , Liderazgo
9.
Malar J ; 18(1): 255, 2019 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-31357997

RESUMEN

BACKGROUND: Malaria transmission is high in western Kenya and the asymptomatic infected population plays a significant role in driving the transmission. Mathematical modelling and simulation programs suggest that interventions targeting asymptomatic infections through mass testing and treatment (MTaT) or mass drug administration (MDA) have the potential to reduce malaria transmission when combined with existing interventions. OBJECTIVE: This paper describes the study site, capacity development efforts required, and lessons learned for implementing a multi-year community-based cluster-randomized controlled trial to evaluate the impact of MTaT for malaria transmission reduction in an area of high transmission in western Kenya. METHODS: The study partnered with Kenya's Ministry of Health (MOH) and other organizations on community sensitization and engagement to mobilize, train and deploy community health volunteers (CHVs) to deliver MTaT in the community. Within the health facilities, the study availed staff, medical and laboratory supplies and strengthened health information management system to monitor progress and evaluate impact of intervention. RESULTS: More than 80 Kenya MOH CHVs, 13 clinical officers, field workers, data and logistical staff were trained to carry out MTaT three times a year for 2 years in a population of approximately 90,000 individuals. A supply chain management was adapted to meet daily demands for large volumes of commodities despite the limitation of few MOH facilities having ideal storage conditions. Modern technology was adapted more to meet the needs of the high daily volume of collected data. CONCLUSIONS: In resource-constrained settings, large interventions require capacity building and logistical planning. This study found that investing in relationships with the communities, local governments, and other partners, and identifying and equipping the appropriate staff with the skills and technology to perform tasks are important factors for success in delivering an intervention like MTaT.


Asunto(s)
Antimaláricos/uso terapéutico , Participación de la Comunidad/métodos , Malaria/prevención & control , Administración Masiva de Medicamentos/métodos , Tamizaje Masivo/métodos , Agentes Comunitarios de Salud/estadística & datos numéricos , Kenia , Voluntarios/estadística & datos numéricos
10.
Metas enferm ; 22(6): 49-56, jul. 2019. mapas, graf, tab
Artículo en Español | IBECS | ID: ibc-184046

RESUMEN

La salud no es un elemento aislado del entorno, ya que se ve influenciada por los determinantes sociales de la salud. En la actualidad hay una falta de coordinación entre los servicios sociosanitarios que impide que se abarquen correctamente las necesidades de la población. El enfoque de activos en salud promueve que las personas y comunidades sean capaces de utilizar sus propios recursos para promover su salud y bienestar. En el presente trabajo se recorren las etapas llevadas a cabo para la elaboración de un proyecto de recomendación de activos comunitarios en el barrio de Las Fuentes, en Zaragoza, para la derivación de pacientes a recursos comunitarios por parte de profesionales sociosanitarios desde las consultas de Atención Primaria: 1) Realizar un análisis de las características de la población; 2) Identificar las necesidades de la población; 2) Definir las personas destinatarias del proyecto; 3) Efectuar un mapeo de activos del barrio; 4) Determinar los recursos del barrio y catalogarlos en una plataforma electrónica habilitada para el proceso de recomendación de activos; y 5) Definir el proceso de recomendación activos y su evaluación. Con la implementación de dicho proyecto se espera promover actuaciones dirigidas a la promoción y prevención de la salud, disminuir la hiperfrecuentación y medicalización en la Atención Primaria, reducir el aislamiento social vinculando a las personas mayores a la comunidad, mejorar también los conocimientos de los recursos del barrio por parte de los profesionales del centro de salud promoviendo el apoyo social y establecer un sistema de recomendación de activos protocolizado desde el centro de salud


Health is not an element isolated from the environment, because it is influenced by the social drivers of health. Currently, there is lack of coordination between social and healthcare services, which prevents a correct coverage of the population needs. The Social Prescribing approach encourages the ability of persons and the community to use their own resources in order to promote their health and wellbeing. This article goes through the stages conducted for the preparation of a Social Prescribing Project in the Las Fuentes area, in Zaragoza, for the referral of patients to community resources by social and health professionals from Primary Care: 1) To analyze the characteristics of the population; 2) To identify the needs of the population; 3) To define the persons targeted by the project; 4) To map the services in the area; 5) To determine the resources in the area and classify them in an electronic platform enabled to process Social Prescribing; and 6) To define the Social Prescribing Process and its evaluation. It is expected that the implementation of this project will promote actions targeted to health promotion and prevention, reduce the excessive frequency of visits and medicalization in Primary Care, reduce social isolation by linking elderly persons to the Community, improve also the knowledge of the resources in the area by the public health center professionals, thus promoting social support, and establish a Social Prescribing System under protocol by the public health center


Asunto(s)
Humanos , Masculino , Femenino , Anciano , Anciano de 80 o más Años , Participación de la Comunidad/métodos , Enfermeras de Salud Comunitaria/organización & administración , Atención Primaria de Salud , Evaluación en Enfermería , Promoción de la Salud/métodos , Servicios de Salud Comunitaria , Promoción de la Salud/organización & administración
11.
Glob Health Action ; 12(1): 1522149, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31154992

RESUMEN

Background: Sex workers in South Africa face various forms of structural and interpersonal violence, including police violence, exclusion from health services, and stigmatization and marginalization within their communities. In an attempt to counteract the harmful health effects of criminalization and exclusion, risk-reduction workshops are a key component of HIV prevention programs globally. This paper offers a critical investigation of Creative Space workshops - a South African model of risk-reduction workshops for sex workers - taking place in Soweto, Johannesburg. Drawing on Paulo Freire's work, the paper explores the potential of these workshops to contribute to the empowerment, health and well-being of sex workers. Objectives: The aim of this paper is to investigate the social and psychological effects of peer-led risk-reduction workshops for sex workers in Soweto, South Africa, with a particular focus on the ways in which they might contribute to community empowerment. Methods: This paper is based on in-depth interviews and focus group discussions with 32 sex workers conducted as part of a 20-month ethnographic study (December 2015 to July 2017). Data was analyzed combining inductive thematic analysis with a theoretical frame based on Freire's theory of community empowerment. Results: Peer-led risk-reduction workshops can serve as a 'safe space' for sex workers and distribute empowering forms of knowledge, particularly regarding health issues and rights. However, divisions between different groups of sex workers and between sex workers and non-sex workers counteract the potential benefits of the workshops. Conclusions: Peer-led sex worker programs are likely to be more empowering when they are committed to raising critical consciousness and creating solidarity, and embedded in community action, focusing on common issues such as institutionalized racism, livelihood insecurity, and lack of access to safe and secure housing. Such actions would have positive outcomes on health and well-being.


Asunto(s)
Infecciones por VIH/prevención & control , Conducta de Reducción del Riesgo , Trabajadores Sexuales/educación , Trabajadores Sexuales/psicología , Personas Transgénero/educación , Personas Transgénero/psicología , Adulto , Participación de la Comunidad/métodos , Femenino , Grupos Focales , Humanos , Masculino , Grupo Paritario , Trabajadores Sexuales/estadística & datos numéricos , Sudáfrica , Personas Transgénero/estadística & datos numéricos
12.
Health Res Policy Syst ; 17(1): 64, 2019 Jun 26.
Artículo en Inglés | MEDLINE | ID: mdl-31242918

RESUMEN

BACKGROUND: Research funding and production is inequitably distributed internationally, with emphasis placed on the priorities of funders and international partners. Research capacity development, along with agenda-setting for research priorities can create agency and self-sufficiency and should be inclusive of all relevant stakeholders. Myanmar is a fragile state, where decades of conflict have created a weakened healthcare system and health research sector. The population of Eastern Myanmar have long had their healthcare needs met by community-based organisations and ethnic health organisations operating within Eastern Myanmar and the adjoining Thai-Myanmar border. Despite a transition to civilian rule, the current context does not allow for a truly participatory health research capacity development and agenda-setting exercise between the health leaders of Eastern Myanmar and the government in Yangon. In this context, and with a desire to enhance the capacity, legitimacy and agency of their organisations, the health leaders of Eastern Myanmar are seeking to develop their own health research capacity and to take control of their own research agenda. METHODS: Approximately 60 participants from 15 organisations attended a 3-day forum with the goals of (1) developing research capacity and interest through a research conference and methods workshop; (2) using a nominal group technique (NGT) to develop a locally driven research agenda; and (3) supporting the development of local research projects through ongoing funding and mentorship. RESULTS: Participants were actively engaged in the workshops and NGT. Participants identified a broad range of health issues as priorities and were able to develop consensus around a list of 15 top priorities for the populations they serve. Despite availability of ongoing support, participants did not pursue the opportunity to engage in their own research projects emerging from this forum. CONCLUSIONS: The NGT was an effective way to achieve engagement and consensus around research priorities between a group of healthcare providers, researchers and policy-makers from a variety of ethnic groups. More active involvement of senior leadership must happen before the energy harnessed at such a forum can be implemented in ongoing research capacity development.


Asunto(s)
Participación de la Comunidad/métodos , Grupos Étnicos , Prioridades en Salud/organización & administración , Investigación sobre Servicios de Salud/organización & administración , Grupos Minoritarios , Creación de Capacidad/organización & administración , Humanos , Mianmar
13.
PLoS Biol ; 17(6): e3000357, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-31246950

RESUMEN

Citizen science is mainstream: millions of people contribute data to a growing array of citizen science projects annually, forming massive datasets that will drive research for years to come. Many citizen science projects implement a "leaderboard" framework, ranking the contributions based on number of records or species, encouraging further participation. But is every data point equally "valuable?" Citizen scientists collect data with distinct spatial and temporal biases, leading to unfortunate gaps and redundancies, which create statistical and informational problems for downstream analyses. Up to this point, the haphazard structure of the data has been seen as an unfortunate but unchangeable aspect of citizen science data. However, we argue here that this issue can actually be addressed: we provide a very simple, tractable framework that could be adapted by broadscale citizen science projects to allow citizen scientists to optimize the marginal value of their efforts, increasing the overall collective knowledge.


Asunto(s)
/métodos , Participación de la Comunidad/métodos , /tendencias , Humanos , Conocimiento , Ciencia/métodos , Sesgo de Selección
14.
Int J Public Health ; 64(7): 1107-1115, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31222474

RESUMEN

OBJECTIVES: Many academic medical centers are positioned amidst disadvantaged urban neighborhoods in which healthcare services are underutilized, participation in research studies is low, and need for health improvement is vast. The goal of Temple Health: Block-by-Block (THB3) is to establish a sustainable cohort of Philadelphia residents engaged in individual and community health improvement through health research. METHODS: Recruitment of a population-based sample from 11 Philadelphia zip codes began in August 2015. The cornerstone of the project is the in-home, biannual assessment of each subject. RESULTS: The first-year goal of 1000 enrolled subjects was met. Greater than 90% of subjects represent minority racial or ethnic groups; average age is 46 years; 65% of subjects have a high school education or less. A high burden of health conditions exists including obesity (54%), smoking (41%), hypertension (44%), and diabetes (17.8%). CONCLUSIONS: THB3 provides a research infrastructure to promote community participation in a health improvement initiative from which future translational research, health education and preventive services will emanate. The launch of this cohort study has provided extensive lessons regarding urban community-based research and health promotion initiatives.


Asunto(s)
Participación de la Comunidad/métodos , Promoción de la Salud/organización & administración , Disparidades en el Estado de Salud , Investigación/organización & administración , Adulto , Estudios de Cohortes , Grupos Étnicos , Femenino , Humanos , Hipertensión/epidemiología , Masculino , Persona de Mediana Edad , Grupos Minoritarios , Obesidad/epidemiología , Philadelphia , Factores Socioeconómicos
15.
Int J Circumpolar Health ; 78(1): 1588092, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-30935345

RESUMEN

BACKGROUND: Among Indigenous people in Canada the incidence of HIV is 3.5 times higher than other ethnicities. In Manitoba First Nations, Metis and Inuit people are disproportionately represented (40%) among people who are new to HIV care. Northlands Denesuline First Nation (NDFN) identified the need to revisit their level of knowledge and preparedness for responding to the increasing rates of HIV. NDFN piloted a community readiness assessment (CRA) tool to assess its appropriateness for use in northern Manitoba. METHODS: A First Nation and non-First Nation research team trained to administer the CRA tool at NDFN in Manitoba. Five informants were interviewed using the CRA tool and the responses were scored, analysed and reviewed at community workshops and with stakeholders to develop a 1-year action plan. RESULTS: CRA training was best conducted in the community. Using the readiness score of 2.4 along with feedback from two workshops, community members, the research team and stakeholders, we identified priorities for adult education and youth involvement in programmes and planning. CONCLUSIONS: In response to the increasing incidence of HIV, a northern First Nation community successfully modified and implemented a CRA tool to develop an action plan for culturally appropriate interventions and programmes.


Asunto(s)
Participación de la Comunidad/métodos , Infecciones por VIH/etnología , Infecciones por VIH/prevención & control , Servicios de Salud del Indígena/organización & administración , Inuits , Síndrome de Inmunodeficiencia Adquirida/prevención & control , Síndrome de Inmunodeficiencia Adquirida/terapia , Regiones Árticas , Canadá , Infecciones por VIH/terapia , Conocimientos, Actitudes y Práctica en Salud , Humanos , Liderazgo , Proyectos Piloto
17.
Aust J Prim Health ; 25(2): 113-117, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30986367

RESUMEN

There is a growing population of people from refugee backgrounds settling in Australia. They have often been forced to flee from their homes in violent circumstances and may have spent many years in refugee camps with poor health support. There are multiple barriers to their effective access to health services. Community engagement with this community can be tokenistic and difficult to effect. This paper highlights the importance of developing a meaningful strategy for community engagement that is not 'one-size-fits-all', which is achieved over time. There is a rich resource available to health practitioners if engagement with refugee-background communities is managed according to the set of trauma-informed and structural principles outlined in this paper.


Asunto(s)
Participación de la Comunidad/métodos , Accesibilidad a los Servicios de Salud , Refugiados , Poblaciones Vulnerables , Australia , Humanos
19.
Health Qual Life Outcomes ; 17(1): 60, 2019 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-30975153

RESUMEN

BACKGROUND: To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focuses on the role of expert service users as research partners, hence referred to as expert service users or PI. METHODS: At every stage of the development, service users influenced the design, content and face validity of the measure, collaborating with other researchers, clinicians and stakeholders who were central to this research. Expert service users were integral to the Scientific Group which was the main decision-making body, and also provided advice through the Expert Service User Group. RESULTS: During the theme and item generation phase (stage 1) expert service users affirmed the appropriateness of the seven domains of the Patient Reported Outcome Measure (activity, hope, belonging and relationships, self-perception, wellbeing, autonomy, and physical health). Expert service users added an extra 58 items to the pool of 180 items and commented on the results from the face and content validity testing (stage 2) of a refined pool of 88. In the item reduction and scale generation phase (stage 3), expert service users contributed to discussions concerning the ordering and clustering of the themes and items and finalised the measures. Expert service users were also involved in the implementation and dissemination of ReQoL (stage 4). Expert service users contributed to the interpretation of findings, provided inputs at every stage of the project and were key decision-makers. The challenges include additional work to make the technical materials accessible, extra time to the project timescales, including time to achieve consensus from different opinions, sometimes strongly held, and extra costs. CONCLUSION: This study demonstrates a successful example of how PI can be embedded in research, namely in instrument development. The rewards of doing so cannot be emphasised enough but there are challenges, albeit surmountable ones. Researchers should anticipate and address those challenges during the planning stage of the project.


Asunto(s)
Participación de la Comunidad/métodos , Investigación sobre Servicios de Salud/organización & administración , Medición de Resultados Informados por el Paciente , Calidad de Vida , Toma de Decisiones , Humanos , Reproducibilidad de los Resultados
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