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1.
Artículo en Inglés | MEDLINE | ID: mdl-38566273

RESUMEN

ISSUE ADDRESSED: Suicide is the leading cause of death for Australians aged 15-49 (Department of Health and Aged Care Suicide in Australia, https://www.health.gov.au/health-topics/mental-health-and-suicide-prevention/suicide-in-australia, 2021). With the loss of one community member impacting the individual's family, friends, and wider community. The aim of the article is to showcase a process evaluation of a place-based approach to suicide prevention, exploring the elements of mental health training and events that can be tailored to increase engagement with the men living in a rural Local Government Area in Gippsland, Victoria, Australia. METHODS: Participation records and promotional material for the Local Men Local Communities project was utilised to explore similarities and differences between the training and events offered. RESULTS: Results indicated that men living in rural areas engaged best with events that included a social element such as food or an activity, highlighting that men may find it easier to talk and connect when they have something to do. CONCLUSION: Mental health training and events need to be tailored to meet the needs of the target population. Key details to consider include location, time, promotional material, content, and inclusion of a social element. SO WHAT?: When rural men were provided ownership of their conversations, they were more likely to have them. This challenges the stereotype that men do not talk and creates the opportunity for social connection within the community.

2.
J Intellect Disabil ; : 17446295241245783, 2024 Apr 05.
Artículo en Inglés | MEDLINE | ID: mdl-38578112

RESUMEN

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

3.
J Rural Health ; 2024 Apr 11.
Artículo en Italiano | MEDLINE | ID: mdl-38602299

RESUMEN

PURPOSE: This exploratory study described facilitators and barriers to reducing tobacco disparities in 2 small rural communities and identified ways to reduce tobacco use. METHODS: This was a descriptive design using qualitative methods. We created a resource database for 2 rural Kentucky counties, using a Culture of Health Framework. We recruited 16 organizational stakeholders serving low-socioeconomic populations and conducted focus groups and key informant interviews. We also completed key informant interviews with 7 tobacco users. Lastly, we tailored Community Action Plans for each county based on the data and then solicited feedback from the key stakeholders. FINDINGS: The 2 counties were similar in population size, but County A had fewer resources than County B, and the stakeholders expressed differences toward tobacco use and quitting. County A stakeholders talked most about the protobacco culture and that tobacco users accept the risks of smoking outweighing the benefits of quitting; they also expressed concerns about youth use and the influences of family, society, and industry. County B stakeholders described ambivalence about the health effects of use and quitting. County A's Action Plan identified an opportunity to build Community Health Worker-delivered tobacco treatment into a new school-based health center. County B's Action Plan focused on reaching tobacco users by providing incentives for participation and tailoring messages to different audiences. CONCLUSIONS: Tobacco control resources and stakeholder perspectives vary in small rural communities, implying a need for tailored approaches. Tobacco users in rural areas are a critical population to target with cessation resources.

4.
Disabil Rehabil ; : 1-15, 2024 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-38592071

RESUMEN

PURPOSE: To examine the lifespace of participants referred for occupational therapy driving assessment following acquired brain injury, to understand how, why, where and with whom access and participation in community-based occupations is occurring during the period of driving disruption. MATERIALS AND METHODS: The mixed methods, convergent research design utilised a travel diary and Lifespace Mobility Assessment-Composite quantitative elements and semi-structured interviews analysed qualitatively with an interpretive description lens. RESULTS: Forty-eight participants (56.25% male) aged between 26 and 65 years, left home on average once/day, primarily to conduct instrumental activities of daily living, health management, and social participation community-based occupations. Most reported restricted lifespace (54.2%) requiring assistance to conduct community occupations (68.1%). Support was primarily provided by family members (80.3%). Analysis of semi-structured interviews (n = 15) created three themes that shaped participant occupational experience during driving disruption: (i) changes to occupational participation; (ii) reliance on others for community access and participation; and (iii) trying to move forward. CONCLUSION: The period of driving disruption following the onset of acquired brain injury is a time of occupational disruption which restricts lifespace, changing how, why, where and with whom participation in community-based occupations occurs. Rehabilitation facilitating occupational adaptation process to enhance community access capacity is indicated.


The period of driving disruption following the onset of acquired brain injury is a time of occupational disruption which restricts lifespace and influences participation in community-based occupations.Occupational therapists should provide an individualised potential pathway to return to driving with frequent and varied means of reinforcing interim advice to abstain from driving.Implementing occupational adaptation can progress community participation goals by establishing community access skills, habits, routines and confidence to foster participation and satisfaction and rebuild occupational identity following acquired brain injury.

5.
Autism ; : 13623613241244548, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38622794

RESUMEN

LAY ABSTRACT: Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

6.
J Appl Res Intellect Disabil ; 37(3): e13232, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38623597

RESUMEN

BACKGROUND: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. METHODS: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. RESULTS: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. CONCLUSIONS: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves.


Asunto(s)
Trastorno Autístico , Discapacidad Intelectual , Adulto , Humanos , Proyectos de Investigación
7.
Ann Vasc Surg ; 2024 Apr 04.
Artículo en Inglés | MEDLINE | ID: mdl-38582195

RESUMEN

OBJECTIVE: to analyze patient perception of functional status related to activity and participation of rehabilitated and non-rehabilitated individuals with PAD. METHODS: Cross-sectional study assessing the activity and participation domain using the Human Activity Profile (HAP) questionnaire and the Participation Scale (P-scale), respectively. Groups were compared using Chi-square test and unpaired t-test. RESULTS: A total of 87 individuals (36 rehabilitated) with 65.28 ± 8.29 years (66.7% male) were included. HAP classified 58.6% of individuals with weak or inactive physical activity level, and approximately half of the sample did not have participation restriction. HAP scores and P-scale (locomotion inside and outside home) were lower in non-rehabilitated than rehabilitated individuals. CONCLUSION: Individuals with PAD presented little participation restriction and a great activity limitation, the last one being more evident among non-rehabilitated.

8.
Sante Publique ; 36(1): 73-80, 2024 04 05.
Artículo en Francés | MEDLINE | ID: mdl-38580469

RESUMEN

INTRODUCTION: In France, since 2017 the law has allowed people to change the gender marker on their civil status documents without having undergone medical treatment and sterilization surgery. However, no legislative framework has been provided to ensure their right to family, leaving those who wish to become parents in a space of social, political, and legal uncertainty that is inconsistent with international and human rights. In parallel, France has developed an arsenal of health strategies that constrain actors working in the field. PURPOSE OF THE RESEARCH: This study examines the possibilities available to public health actors for promoting reproductive health in the absence of legislation and in the context of political and legislative adversity. To this end, it relies on a participatory, critical, and lexicometric analysis of national strategies for sexual and reproductive health and parenthood support. RESULTS: Governance strategies make no mention of parentality among transgender people. Sexual and reproductive health policies focus on tackling sexually transmitted infections, on health pathways, and on violence and discrimination. The analysis also highlights a lack of awareness on this topic. CONCLUSIONS: Shortcomings in the legislative framework and public health strategies raise ethical questions about the promotion of reproductive health and the potentially non-inclusive approach of actors in the field. These issues force communities to carry out actions outside the scope of ordinary regulations, and they highlight the political positioning of the public-health field in France.


Introduction: Depuis 2017, la loi française a mis fin à la nécessité d'intervention médicale et de stérilisation des personnes faisant modifier leur sexe administratif à l'état civil. Pour autant, aucun cadre législatif n'a été prévu pour garantir leur droit à la famille, ancrant leurs projets parentaux dans un aléa social, politique et juridique contraire aux droits humains et internationaux. Parallèlement, l'État français s'est doté d'un arsenal de stratégies de santé contraignant la place et le rôle des actrices et acteurs de terrain. But de l'étude: Cette étude interroge les possibilités des actrices et acteurs de santé publique à promouvoir la santé reproductive des personnes en l'absence de toute législation et dans un contexte d'adversité politique et législative. Pour cela, elle s'appuie sur une analyse participative, critique et lexicométrique des stratégies nationales de santé sexuelle et reproductive et de soutien à la parentalité. Résultats: La parentalité des personnes trans est absente des stratégies de gouvernance. Les politiques de santé sexuelle et reproductive se centrent autour de la lutte contre les infections sexuellement transmissibles, les parcours de santé et les discriminations et violences. L'analyse fait également ressortir la méconnaissance de cet enjeu. Conclusions: Les manquements du cadre législatif et des stratégies de santé publique interrogent les possibilités éthiques pour les actrices et acteurs de terrain de promouvoir la santé reproductive de manière non inclusive. Ce constat condamne les communautés à mener des actions en dehors du droit commun et pose la question de la place politique du champ de la santé publique en France.


Asunto(s)
Salud Reproductiva , Enfermedades de Transmisión Sexual , Humanos , Conducta Sexual , Política Pública , Política de Salud
9.
Gac Sanit ; 38: 102387, 2024 Apr 11.
Artículo en Español | MEDLINE | ID: mdl-38608387

RESUMEN

OBJECTIVE: To explore the experiences of individuals who develop projects and interventions where community participation-action constitutes a strategic tool for reducing health inequalities. METHOD: Qualitative study based on semi-structured, in-depth online interviews with individuals considered experts in the development of health promotion strategies involving community participation. A total of 12 individuals from the healthcare, social healthcare, academic, and associative backgrounds were selected. The texts were analyzed following the thematic content analysis approach. RESULTS: The prominent strength of the processes involving the interviewed individuals is their participatory approach. However, there is no genuine commitment to promoting community participation from primary healthcare, and precarity has been identified as a significant weakness in the development of participatory health promotion projects. The sustainability of participatory processes relies on the transfer of knowledge to the community and their empowerment. CONCLUSIONS: Participatory processes have demonstrated their ability to reposition the community as an essential part of the healthcare system. It would be interesting to use a measurement tool for participation in all community health actions, both to guide their design and planning and to assess the depth of participation and its impact on the process. Enhancing community action expectations for health in the near future involves promoting a community-oriented approach in primary care and intersectoral collaboration, which requires a significant institutional and policy commitment.

10.
Health Sci Rep ; 7(4): e2034, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38655420

RESUMEN

Background: Dengue, the world's fastest-growing vector-borne disease, has skyrocketed in the 21st century. Dengue has harmed human health since its first known cases among Spanish soldiers in the Philippines to its 21st-century outbreaks in Southeast Asia, the Pacific, and the Americas. In light of the current circumstances, it is imperative to investigate its origin and prevalence, enabling the implementation of effective interventions to curb the upsurge. Methods: Our study examines the history of dengue outbreaks, and evolving impact on public health, aiming to offer valuable insights for a more resilient public health response worldwide. In this comprehensive review, we incorporated data from renowned databases such as PubMed, Google Scholar, and Scopus to provide a thorough analysis of dengue outbreaks. Results: Recent dengue outbreaks are associated with rapid urbanization, international travel, climatic change, and socioeconomic factors. Rapid urbanization and poor urban design and sanitation have created mosquito breeding places for dengue vectors. Also, international travel and trade have spread the pathogen. Climate change in the past two decades has favored mosquito habitats and outbreaks. Socioeconomic differences have also amplified the impact of dengue outbreaks on vulnerable communities. Dengue mitigation requires vector control, community engagement, healthcare strengthening, and international cooperation. Conclusion: Climate change adaptation and urban planning are crucial. Although problems remain, a comprehensive vector control and community involvement plan may reduce dengue epidemics and improve public health in our interconnected world.

11.
Disabil Rehabil Assist Technol ; : 1-6, 2024 Mar 04.
Artículo en Inglés | MEDLINE | ID: mdl-38436088

RESUMEN

Although assistive technology (AT) is recognized as a basic human right, access to AT, and particularly electronic aids to daily living (EADL), is limited. We aimed to understand how persons with high level spinal cord injury (SCI) prioritize EADL needs and assess satisfaction and efficacy of self-identified EADL. Thus, in this case series, we recruited three participants with C4, C5 or C6 SCI receiving in-patient SCI rehabilitation. Each received dedicated occupational therapy-based assistance in identifying EADL items within an unrestricted envelope of support ($5000 CDN) for use in maximizing physical independence and supporting their return to community-based living. Items identified were categorized by need (emergency/security; home environment control; or virtual access to the outside world). Each participant selected distinct EADL. Evaluation of selected EADL items indicated very high satisfaction. The selected EADL contributed to participants' returns to employment, community life, or reduced requirements for attendant services. These findings suggest that identification of essential technology should reflect the unique needs of each person and the context in which it will be used. These findings also support use of mainstream technology to meet EADL needs of individuals with limited physical abilities.


Initial spinal cord injury (SCI) rehabilitation should provide individualized identification and selection of electronic aids for daily living (EADL) for those with very minimal arm and hand function, including mainstream voice-activated technologies, to increase independence and function.Individualized self-selection of EADL, rather than general prescription-based provision of EADL, is most appropriate for identifying key EADL that will enhance function and independence in the community.Support from occupational therapists with expertise in SCI rehabilitation can provide expertise in identifying and setting up EADL, including in the community, to ensure selected EADL function as intended.

12.
OTJR (Thorofare N J) ; : 15394492241238949, 2024 Mar 17.
Artículo en Inglés | MEDLINE | ID: mdl-38494742

RESUMEN

Previous studies have stated that both objective and subjective cognitive abilities and mental health symptoms are associated with community participation poststroke. However, there is a need to understand the direct and indirect associations among these variables in persons with stroke. The objective of this study was to investigate whether mental health symptoms mediate the associations of subjective and objective cognitive abilities with community participation poststroke. We built regression-based mediation models with 74 participants with mild to moderate stroke. Independent variables were objective and subjective cognitive abilities. The dependent variable was community participation. Mediators were mental health symptoms including depression, apathy, and anxiety. The results indicated that depression (b = .093), apathy (b = .134), and anxiety (b = .116) fully mediated the association between subjective cognitive ability (p < .05), but not objective cognitive ability (p > .05), and community participation poststroke. Our findings suggest that poor subjective cognitive ability combined with mental health symptoms should be addressed together to promote community participation poststroke.


Mental Health Mediators for Subjective, Not Objective, Cognition, and Community Participation PoststrokeResearchers and clinicians have used both objective and subjective tools to evaluate cognitive abilities including memory, attention, and thinking. Objective cognitive ability indicates the level of cognitive ability measured using an objective tool such as pen and paper tests while subjective cognitive ability refers to self-perceived cognitive ability indicated via self-report questionnaires. Previous studies have shown that both objective and subjective cognitive abilities and mental health symptoms (depression, anxiety, and apathy) are associated with community participation in persons with stroke. However, there is a need to understand the direct and indirect associations among objective and subjective cognitive abilities, mental health symptoms, and community participation. In this context, we investigated if mental health symptoms mediated the associations of subjective and objective cognitive ability with community participation poststroke. Our results suggest that mental health symptoms fully mediated the associations between subjective cognitive ability and community participation but not the associations between objective cognitive ability and community participation poststroke. Our findings propose that rehabilitation and occupational therapy professionals should carefully monitor subjective cognitive problems with special attention to persons with poststroke depression, apathy, and anxiety to increase community participation poststroke.

13.
Comunidad (Barc., Internet) ; 26(1): 31-34, mar. 2024.
Artículo en Español | IBECS | ID: ibc-231850

RESUMEN

Las escuelas de salud son proyectos comunitarios con un bagaje y una evidencia científica ya conocidos y demostrados. Su influencia en la mejora de la calidad de vida de las persones mayores con soledad no deseada es uno de sus grandes beneficios. Por este motivo, como equipo de Atención Primaria apostamos por ella. El objetivo principal de la escuela es promover el envejecimiento activo y mejorar el estado de salud percibido por las persones mayores de 60 años participantes. Las escuelas de salud son espacios sanadores. Su repercusión es bidireccional, ya que influye en todas las personas que participan, mejorando su calidad de vida y dotándolas de herramientas útiles y sencillas para su día a día a través de los conocimientos adquiridos y las experiencias compartidas. Generar puntos de encuentro en el barrio enriquece y aporta salud más allá de los centros sanitarios. Salir a la calle, hablar de igual a igual, fomentar las redes de apoyo y vincularse a una red, son elementos que fortalecen y mejoran la vertiente social de las personas, ayudándolas a curar heridas de vida. Apostar por la salud comunitaria, es apostar por la salud en todas sus dimensiones. (AU)


Health schools are community projects with a well-known and proven scientific past and background. Their influence in improving the quality of life for elderly individuals experiencing unwanted loneliness is one of their significant benefits. That's why we, as a primary health care team, decided to support it. The main aim of the school is to promote active aging and enhance the perceived health status of participants aged over 60. Health schools are healing spaces. Their impact is bidirectional, which has an impact on all participants. Our quality of life improves as we share knowledge and experiences, providing us with healing, useful and straightforward tools for our daily lives. Creating meeting points in the neighbourhood enriches us and contributes to our well-being beyond healthcare centres. Going out into the community, having peer to peer conversations, fostering support networks, and connecting with others sustain us and make us socially stronger, healing life's wounds. To take a chance on the community is in essence to bet on health in all its dimensions. (AU)


Asunto(s)
Humanos , Masculino , Femenino , Persona de Mediana Edad , Anciano , Instituciones Académicas , Participación de la Comunidad/métodos , Integración a la Comunidad , Envejecimiento Saludable , Salud Pública , Salud del Anciano
14.
Comunidad (Barc., Internet) ; 26(1): 35-38, mar. 2024. graf
Artículo en Español | IBECS | ID: ibc-231851

RESUMEN

Objetivo. Proponer una intervención participativa comunitaria según las necesidades de salud percibida por las personas mayores del Programa de Salud Cardiovascular de un centro de salud familiar y comunitaria de una comuna de Santiago de Chile durante el período de la pandemia de la COVID-19. Métodos. Se utilizó una metodología participativa de la comunidad, la cual se desarrolló en dos fases: diagnóstico participativo comunitario y desarrollo de la propuesta participativa de una intervención en salud comunitaria. Resultados. Desde el diagnóstico participativo comunitario, los participantes eligieron el desarrollo de un programa educativo fundamentado en las necesidades de salud, además de la entrega de material educativo sobre estilos de vida saludable y recomendaciones para tener un buen control de sus enfermedades. Conclusión. Desde el diagnóstico y planificación participativa, es posible intervenir en pro de las necesidades de las personas, familias y comunidades y capacitarlas en el manejo de su propia salud. (AU)


Aim. To propose a community participatory intervention according to the health needs perceived by elderly people in the Family and Community Health Centre Cardiovascular Health programme of a Santiago de Chile commune during the COVID-19 pandemic. Methods. A community participatory methodology was used, which was developed over two phases: community participatory diagnosis and development of a participatory proposal for a community health intervention. Results. From the community participatory diagnosis, participants opted for development of an educational programme based on health needs, in addition to the delivery of educational material related to healthy lifestyles and recommendations for robust control of their diseases. Conclusion. From diagnosis and participatory planning, it is possible to intervene in favour of the needs of individuals, families and communities and train them in managing their own health. (AU)


Asunto(s)
Humanos , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , /epidemiología , Participación de la Comunidad/métodos , Salud Pública/métodos , Encuestas y Cuestionarios , Pandemias
15.
Indian J Community Med ; 49(1): 52-55, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38425982

RESUMEN

Background: Social and community participation are major indicators to assess the adequacy of treatment and rehabilitation in patients with spinal cord injury (SCI). This study examined the relationship between functional independence, level of disability, and social and community participation among people with SCI in India. Materials and Method: In this cross sectional study, 110 persons with SCI, aged 18 years and above participated in a community setting, in Karnataka, India. Spinal Cord Independence Measure Version III-self-reporting (SCIM III-SR), Craig Handicap Assessment and Reporting Technique (CHART), and WHO Disability Assessment Schedule 2.0 (WHODAS) were the clinical outcome measures. Spearman's correlation and stepwise multiple linear regression were done to determine association and identify the factors determining the community participation of people with SCI. Results: CHART physical independence had a positive correlation with SCIM self-care (R = 0.446) and SCIM mobility (r = 0.434). CHART cognitive independence (R = -0.38) and CHART mobility (R = -0.396) had a weak correlation with WHODAS. SCIM self-care and SCIM mobility (R2 = 0.34) were determinants of CHART cognitive independence. SCIM respiratory and sphincter management and SCIM self-care (R2 = 0.327) were determinants of CHART mobility. Conclusion: Self-care and mobility of people with SCI determine their ability to successfully reintegrate into the community, warranting a comprehensive community rehabilitation program.

16.
Inquiry ; 61: 469580241235059, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38424697

RESUMEN

To understand the core aspects of an empowerment-based Community Health Worker (CHW) training program, we studied the model of the Comprehensive Rural Health Project (CRHP) in Jamkhed, India-an organization known for facilitating empowerment of women as Village Health Workers (VHWs) and agents of community change. We define empowerment as a means by which individuals gain health and development-related skills and knowledge to facilitate positive change within their lives and communities. Using VHW training observations and semi-structured interviews with health workers and senior trainers, 6 themes were developed and applied in 4 focus group sessions with 18 multigenerational VHWs trained by the CRHP. Transcripts were qualitatively analyzed under 6 themes-selection, baseline training, continuing education and support, community participation, community empowerment, and commitment and longevity. Empowerment of VHWs was found to be an intentional process involving the creation of safe and supportive environments conducive to long-term participatory and experiential learning with professionals who facilitate and mentor. The impact of the baseline training is maintained through ongoing program-VHW interactions and knowledge reinforcement in both the field and training center. Importantly, these interactions reinforce VHWs' credibility and confidence in communities served. Community participation was found to be of key importance starting at the selection phase. The methods used for selection, training and ongoing support are critical to developing a cadre of competent, effective and motivated VHWs as well as fostering long-lasting self-development and leadership skills. Downstream effectiveness of community empowerment on health outcomes is demonstrated through indicators such as access to safe deliveries, declining child malnutrition rates, high vaccination rates as well as reductions in stigmatization of illness and caste discrimination.


Asunto(s)
Agentes Comunitarios de Salud , Salud Rural , Niño , Humanos , Femenino , Grupos Focales , Motivación , India
17.
J Pediatr Health Care ; 38(2): 184-193, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38429030

RESUMEN

INTRODUCTION: This qualitative research study explored practices that support and advance diverse membership in Patient and Family Advisory Councils (PFACs) in children's hospitals and the involvement of PFACs in organization-level diversity, equity, and inclusion work. METHOD: This study consisted of a focused literature review and 17 key informant interviews. The study sought to identify important learnings about (1) recruiting and supporting patient and family advisors (PFAs) from historically marginalized populations and (2) ways to develop and sustain meaningful partnerships with PFAs and PFACs in diversity, equity, and inclusion work. RESULTS: The study findings highlighted a number of best practices for hospitals to adopt, including more actively reaching out to communities served, addressing barriers to participation through approaches and structures such as specialty PFACs and "tiered" options for participation by PFAs, and co-creation of inclusive environments. DISCUSSION: To move forward with this work, additional research, true commitment from health care organizations, and shared guidance and tools for the field are needed.


Asunto(s)
Diversidad, Equidad e Inclusión , Fluorocarburos , Niño , Humanos , Comités Consultivos , Investigación Cualitativa , Hospitales Pediátricos
18.
Disabil Soc ; 39(3): 743-766, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38482454

RESUMEN

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.


Points of interestPeople with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people's needs (e.g. person-centered planning), builds on people's strengths and contributes to recovery and community participation.Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: 'burden of support'.Examples of burden of support identified include:Clients' needs and wishes are sometimes not sufficiently attended too when working with a personal care plan.Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment.The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs.Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness.The research recommended that those who improve services should also alleviate these burdens.

19.
Disabil Rehabil ; : 1-11, 2024 Feb 28.
Artículo en Inglés | MEDLINE | ID: mdl-38419367

RESUMEN

PURPOSE: Environmental enrichment seems to enable people in the chronic phase of acquired brain injury (ABI) to experience new functional abilities and motor/coping strategies and consequently to become more adaptable which might prevent/reverse functional decline. This study describes the influence of a five-days Surf Week program on participants on physical function, self-efficacy, functional balance performance and self-perceived recovery. MATERIALS AND METHODS: A multiple-baseline single-case design was used. Adults participating in the Surf Week in chronic phase of ABI were eligible to participate. Participants completed a battery of tests monitoring physical function, self-efficacy, functional balance performance and self-perceived recovery. This battery was repeated 5 times over a 1-year period, two times pre-Surf Week, three times post-Surf Week. Visual data inspection with two non-overlap methods were used to determine if patients showed sustained improvement in outcomes post-intervention. RESULTS: A moderate to strong indication for improvements on physical function, functional balance performance and self-perceived recovery exists till six months follow-up. No indication was observed on self-efficacy till six months follow-up. CONCLUSIONS: A five-days Surf Week is a physically, cognitively and socially intensive stimulating activity that can positively challenge individuals after ABI and seems to improve physical functioning, functional balance performance and self-perceived recovery.


Surf therapy, if appropriate measures are taken, is a safe yet physically, cognitively and socially intensive stimulating intervention that capitalizes on enriched environment principles, and might address the holistic needs in this population.Surf therapy might positively influence physical function, balance and self-perceived recovery in adults with acquired brain injury in the chronic phase.Rehabilitation professionals should experience/explore with their patients with acquired brain injury challenging (group) outdoors activities such as these, aiming to meet patients' needs, interests, or values in the chronic phase of recovery, and so create successfully participation in activities that capitalizes on enriched environment principles.

20.
Res Dev Disabil ; 147: 104696, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38359675

RESUMEN

BACKGROUND: Parent coaching emerges as a preferred approach for enhancing performance and participation of children with developmental disabilities (DD), but limited clinical trials examine its effects on community participation. AIM: To evaluate whether parent coaching, specifically using Occupational Performance Coaching (OPC), enhances community participation among young children with DD. METHOD AND PROCEDURES: A pilot double-blind randomized controlled trial was conducted. Parents of 50 children with DD (31 male, 19 female, mean age 4 years 10 months) were randomly assigned to the OPC group (n = 25) or parent consultation group (n = 25). Each parent received a maximum of eight coaching sessions or consultations. The primary outcome was children's community participation as assessed through parent-report measures at baseline, pre-intervention, post-intervention, and an 8-week follow-up. OUTCOMES AND RESULTS: Both groups showed significant improvements in parent-identified, goal-specific community participation after the intervention (mean difference [MD]=2.26-2.56), and these improvements were sustained during the follow-up. Despite a trend favoring parent coaching, the group difference in the improvements was not evident (MD=0.18-0.28). Both groups displayed positive improvements in children's overall community involvement post-intervention (MD=0.32); however, the time effects were not statistically significant. CONCLUSIONS AND IMPLICATIONS: OPC, by coaching parents, could enhance goal-specific community participation in children with DD, producing effects similar to those achieved through parent consultation.


Asunto(s)
Discapacidades del Desarrollo , Tutoría , Niño , Humanos , Masculino , Femenino , Preescolar , Proyectos Piloto , Padres , Participación de la Comunidad
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