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1.
Ambio ; 2024 Jul 02.
Artículo en Inglés | MEDLINE | ID: mdl-38954144

RESUMEN

This study examines young people's involvement in regional sustainability transformation processes based on a real-world experiment in a community of 5700 inhabitants on the southern outskirts of city of Vienna, Austria. The eight-month experiment aimed to explore methods and tools for transdisciplinary co-creation with youth, the impact of structural conditions on their participation and the effects of their integration. Findings highlight the crucial roles of topics relevant to youth, a trusted intermediary like a youth worker, and structural conditions such as political support and resource allocation in enhancing youth engagement success. Collaborative decision making with policymakers and direct communication were also key to effective participation. The real-world experiment laid the groundwork for future participatory methods and had an impact on youth-community relations. It affirmed the role of youth in regional development, with effects that extended beyond the immediate scope of the experiment in terms of time, space, and topic.

2.
J Occup Rehabil ; 2024 Jul 02.
Artículo en Inglés | MEDLINE | ID: mdl-38954248

RESUMEN

PURPOSE: This study assessed the effectiveness of Individual Placement and Support (IPS), Participatory Workplace Intervention (PWI), and IPS + PWI on work participation and health of people with work disabilities. METHODS: A randomised controlled 2 × 2 factorial trial with 120 clients and an 18-month follow-up was performed. Differences between IPS and no-IPS and between PWI and no-PWI were assessed using log-rank tests and Cox proportional hazards models. RESULTS: In the IPS group, restricted mean survival time (RMST) for sustainable paid employment was 352 days, compared to 394 in the no-IPS group (HR = 1.47, 95% CI = 0.81-2.63). In the PWI group the RMST was 378 days, compared to 367 in the no-PWI group (HR = 0.89, 95% CI = 0.48-1.64). For the secondary outcome 'starting any paid employment, a trial placement, or education' RMST was significantly lower for the IPS group (222 days) than for the no-IPS group (335 days; HR = 1.85, 95% CI = 1.01-3.42). Mental health was significantly lower (worse) in the PWI group (difference -4.07, 95% CI = -7.93 to -0.22) than in the no-PWI group. For all other secondary outcomes, no statistically significant differences were found. CONCLUSION: No statistically significant differences were observed in the duration until starting sustainable employment between IPS and no-IPS, and between PWI and no-PWI. The duration until starting any paid employment, a trial placement, or education was shorter in the IPS group than in the no-IPS group, but further research should explore whether this also increases sustainable employment in the longer term.

3.
Res Involv Engagem ; 10(1): 69, 2024 Jul 02.
Artículo en Inglés | MEDLINE | ID: mdl-38956744

RESUMEN

BACKGROUND: Although underserved populations- including those from ethnic minority communities and those living in poverty-have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research. METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. RESULTS: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. CONCLUSIONS: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.


THE PROBLEM: People living in poverty, and people from ethnic minority communities may be referred to as 'underserved'. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities  worse. WHAT WE DID: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities. WHAT WE FOUND: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other's culture and history makes it easier to work together.

4.
Disabil Health J ; : 101666, 2024 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-38964937

RESUMEN

Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings-to work, grocery stores, or medical appointments, for example-have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.

6.
Clin Gerontol ; : 1-12, 2024 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-38967355

RESUMEN

OBJECTIVES: This study investigated the impact of social activities on cognitive functioning and psychopathological symptoms. METHODS: Participants aged 55 or older were enrolled through communities. Initial measures assessed demographic data, neuropsychological functioning, psychopathological state, and happiness. Social activities were evaluated using a modified 12-item tool, with 3-4 activities as the cutoff. Follow-up after 6-9 months included Mini-Mental State Examination (MMSE), Beck Depression Inventory - II (BDI-II), Beck Anxiety Inventory (BAI), Health Assessment Questionnaire (HAQ), and Patient Health Questionnaire-15 (PHQ-15) measurements. Predictive models for psychiatric and cognitive statuses were built using multiple linear regression, adjusting for baseline conditions. RESULTS: Initially, 516 older individuals enrolled, with 403 undergoing follow-up. During follow-up, the low participation group reported lower MMSE scores, higher BAI scores, and increased PHQ-15 risk. Negative correlations between social activity numbers and PHQ-15 results were found. Engagement in social clubs correlated positively with higher MMSE scores, while regular interactions with one's adult child(ren) were linked to decreased BAI scores. CONCLUSIONS: The quantity of social activities was associated with lower somatic distress. Social club engagement positively influenced cognition, and regular interactions with one's adult child(ren) mitigated anxiety among older individuals. CLINICAL IMPLICATIONS: Enough types of social activities, participating in social clubs, and adequate interactions with children protected against psychopathologies.

7.
Child Abuse Negl ; : 106931, 2024 Jul 06.
Artículo en Inglés | MEDLINE | ID: mdl-38972820

RESUMEN

BACKGROUND: Current evidence on adolescent participation in violence research has primarily measured distress, harm or upset using quantitative methods. There are relatively few studies which have employed qualitative methods to understand adolescent emotional experiences, and to articulate the experiences of participation from their own perspective. OBJECTIVE: This study aimed to assess adolescents' experiences of participating in research on violence in different contexts, namely Romania, South Africa, and the Philippines. METHODS: A purposive sample of adolescents (N = 53, 51 % female) were recruited from rural, urban, and peri-urban areas in Romania, the Eastern Cape Province of South Africa, and Metro Manila, Philippines. Semi-structured one-on-one in-depth interviews and drawings sought adolescent perspectives on their experiences of participation, including the emotions they felt, and their perceptions of research on violence. RESULTS: Drawing on analysis of interviews and drawings, adolescents reported a layered emotional experience, ranging from sadness, anger, apprehension, and upset, to joy, relief, and laughter. Their emotional experiences were driven by participation as a relational encounter, both with the researchers involved, as well as with other children and young people they encountered. Adolescents emphasized participation as enabling disclosure of difficult experiences, and the creation of awareness of violence. CONCLUSIONS: Adolescent perspectives of participation in research on violence are nuanced and encompass their lived experience as well as the fundamentally relational nature of participation. Adolescents experienced increased awareness of topics in violence and perceived research participation as enabling disclosure and possible help-seeking. Measures of participation impact developed along with adolescents, which reflect this complexity, are needed.

8.
Child Abuse Negl ; : 106932, 2024 Jul 06.
Artículo en Inglés | MEDLINE | ID: mdl-38972819

RESUMEN

BACKGROUND: Children's participation in research is a rights-based principle. However, young children are often excluded from research on sensitive topics, due to gatekeepers concerns that participation would cause distress/re-traumatization and conflict with the principle of providing adequate protection from harm. OBJECTIVE: To provide evidence around young children's feelings, including potential distress, and beliefs in mixed-method interviews about violence and difficult experiences. PARTICIPANTS AND SETTING: Data were collected from South African interviewer focus group discussions and young child (age 6-10) interviews, along with observations and fieldnotes from young child (age 6-17) interviews. METHODS: We collected and analyzed qualitative data focused on children's displayed and reported emotions and beliefs in violence-focused interviews. RESULTS: Findings showed the quantitative interview was frequently a positive experience for young children, and children who became upset or emotional stated their feelings were due to violence they experienced. The interviewer seemed to represent a safe person to whom the child could disclose. The play- and arts-based methods of the interview were useful in building this safety and providing space for children to regulate difficult emotions. CONCLUSIONS: In a carefully managed interview environment using developmentally appropriate methods, young children are enthusiastic participants and do not appear to experience undue distress or trauma when asked about violence and other sensitive topics. Findings demonstrate that young children can be safely included in research about violence and issues that impact them and can exercise their right to participation when research methods, environments, and safeguards are appropriately adapted to their needs.

9.
Res Social Adm Pharm ; 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38971677

RESUMEN

BACKGROUND: The use of digital Patient- Reported Outcomes (PRO) tools has been shown to enhance the exchange of information and shared decision-making in medical encounters. However, their influence on patient-pharmacist interactions has not yet been explored. OBJECTIVES: This study aimed to examine the impact of RxTalk™, a digital PRO tool, in supporting the communication between patients and pharmacists compared to usual care. METHODS: Intervention: RxTalk™ was developed to collect information about medication adherence and beliefs, using a tablet computer. STUDY DESIGN: A pilot randomized controlled study was conducted at a community pharmacy in Wisconsin, USA. Sixty patients were randomized to either the intervention group who used RxTalk™ during medication pick-up or the control group who did not use the tool. Patients who used RxTalk™ received paper copies of their responses which were also shared with pharmacists. The consultation was audio-recorded for both groups and coded using the Active Patient Participation Coding scale. Follow-up phone interviews were conducted with both groups within one week of enrollment. RESULTS: Patient tapes were analyzed. In the unadjusted model, patients in the intervention group had a higher active participation rate (p = 0.004) and raised significantly more concerns during consultations (p < 0.001) compared to the control group. Pharmacists asked twice as many questions while counseling patients in the intervention group compared to the control group (p < 0.001). After controlling for patients' demographics and pharmacists' questions, there was a statistical difference between the two patient groups in their odds of expressing at least one concern utterance. CONCLUSION: This pilot study suggests that collecting PRO from patients with chronic illnesses and providing results to pharmacists and patients can help patients express their health and medication concerns. RxTalk™ would be useful for pharmacists who wish to improve the recognition and management of medication-related problems.

10.
Child Abuse Negl ; : 106934, 2024 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-38971702

RESUMEN

BACKGROUND: Although children's right to participate in decisions that influence their lives is widely recognized, it is rarely present in the assessment and decision-making processes in child protective services (CPS). OBJECTIVE: The aim of this systematic review was to examine children's views and experiences of participating in CPS cases of child abuse and neglect and to identify the gap in scientific knowledge. METHODS: The systematic review follows the PRISMA statement and includes 13 peer-reviewed articles published in several academic journals from 2016 to 2023 reporting primary research with abused and neglected children registered in CPS. RESULTS: Thematic analysis identified five main themes: participation: assessment and decision-making, information and understanding, interaction and relationships, children vs parents, and experience of younger children. The findings show that although a few children reported instances of meaningful participation, overall, children's participation was often reduced to a tokenistic engagement, with limited influence on the decision-making processes. Children, especially younger children, receive insufficient information and struggle to understand the proceedings. Examples of prioritizing parents' views, needs, and rights rather than centering the children's perspectives are reported. CONCLUSIONS: The findings highlight a need for significant changes in how child participation is conceptualized and operationalized within CPS. Implications for practice, policy, and research are discussed to foster children's participation in CPS to contribute to the effective care and protection of children experiencing child abuse and neglect.

11.
Front Pharmacol ; 15: 1371811, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38957384

RESUMEN

Objective: The study was designed to develop and validate a new drug clinical trial participation feelings questionnaire (DCTPFQ) for cancer patients. Methods: Data collection and analysis involved a combination of qualitative and quantitative methods. There were two phases to this study. Phase Ⅰ involved developing a questionnaire to establish a list of items to be included in the pool: A theoretical framework was constructed based on the transitions theory and the Roper-Logan-Tierney theory. After incorporating a theoretical framework, interviewing participants, and reviewing the literature, 44 items were generated. After a Delphi consultation and a pilot test, 36 items proceeded to item analysis and exploratory factor analysis (EFA), and a four-factor structure with 21 items was formed. Confirmatory factor analysis (CFA), test-retest reliability, criteria-related validity, and internal consistency tests were conducted in phase II to examine the psychometric properties. Results: There were 21 items on the DCTPFQ, ranging from 1 (fully disagree) through 5 (fully agree). As a result of EFA and CFA, the four factors of DCTPFQ could be verified, including cognitive engagement, subjective experience, medical resources, and relatives and friends' support. Test-retest reliability of the DCTPFQ was 0.840, and Cronbach's alpha was 0.934. DCTPFQ is significantly correlated with the Fear of Progression Questionnaire-short form (r = 0.731, p < 0.05) and the Mishel's Uncertainty in Illness Scale (r = 0.714, p < 0.05). Conclusion: The DCTPFQ is a useful tool for measuring the drug clinical trial participation feelings among cancer patients.

12.
Front Psychol ; 15: 1386044, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38957887

RESUMEN

Using convenience sampling and snowball sampling methods, data from 432 Chinese international students in 10 countries, including the United Kingdom, South Korea, and the United States, were collected to construct a multivariate sequential-mediated mixed model for cross-cultural adaptation. SPSS 23.0 and AMOS 23.0 were employed for aggregated validity, discriminant validity, and sequential-mediated effects analysis. The study found that: Cultural adaptation stress is negatively correlated with positive coping and positively correlated with negative coping, with negative coping having a significant negative impact during the cross-cultural adaptation process. Positive coping is positively correlated with sports participation, while negative coping is negatively correlated with sports participation. Sports participation is positively associated with in-group identification and negatively associated with out-group bias. In-group identification has a positive impact on cross-cultural adaptation, whereas out-group bias cannot effectively predict cross-cultural adaptation.

13.
Child Abuse Negl ; : 106935, 2024 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-38987103

RESUMEN

Involving children in research is not only advisable but mandatory from both a child rights and an academic perspective. Indeed, recent research has shown that children's participation enriches knowledge and contributes to an in-depth understanding of complex issues, even in sensitive questions such as gender-based violence, leading to improved policy and practice interventions. This article analyses the participation of children both as experts and informants in a research project aimed at creating an early detection model of gender violence applicable in schools. The aims of the study are as follows: i) to analyse the participation strategies used in the research conducted with children in the field of gender-based violence from an ethical and methodological point of view, focusing on strengths and weaknesses, and to identify improvements to be implemented; ii) to collect the experiences of children in this regard. Six expert groups were created specifically for this research project in different locations around Catalonia (Spain). A total of 45 children aged 10-16 participated in all stages of the research, including instrument design (children's questionnaire), discussion of results, building outcomes (model) and dissemination activities (final conference). The questionnaire was answered by a representative sample of 3664 schoolchildren attending 106 schools in Catalonia. This article discusses methodological questions, analysing the benefits and obstacles encountered in working with children, including power relationships, children's voices, engagement, protection, recognitions of capacities and remuneration.

14.
Artículo en Alemán | MEDLINE | ID: mdl-38987453

RESUMEN

In an ageing society, maintaining independent mobility into old age is an important objective. Mental and physical wellbeing depends not only on individual health status, but also to a large extent on the spatial conditions. Local politics and municipal administrations can influence this, especially in urban planning. This discussion article brings together perspectives from public health and urban planning on urban development and mobility against the background of health equity.The results of the AFOOT (Securing urban mobility of an ageing population) cross-sectional study on socio-spatial conditions in small- and medium-sized towns in northwestern Germany and walking and cycling by older people show the importance of residential environmental factors such as proximity to everyday destinations, walking and cycling infrastructure, and street connectivity. Preferences for the design of an age-friendly living environment and the quality of public spaces exist in terms of urban design quality, quality of stay, and safety in public spaces.In order to improve spatial conditions, the situation needs to be recorded using defined indicators and monitoring, and the perspectives of older people need to be integrated. Strategies and measures to promote active mobility in old age are aimed at the multifunctional design of public spaces, the prioritization of active mobility on everyday trips, and ensuring the accessibility of everyday destinations through urban development. Cross-sectoral cooperation between urban planning, transport planning, and public health is essential to promote the active mobility and health of older people.

15.
Artículo en Inglés | MEDLINE | ID: mdl-38987514

RESUMEN

Prostate cancer is the second leading cause of death for men in the U.S. and Black men are twice as likely to die from the disease. However, prostate cancer, if diagnosed at an earlier stage, is curable. The purpose of this review is to identify prostate cancer screening clinical trials that evaluate screening decision-making processes of Black men. METHODS: The databases PubMed, Ovid MEDLINE, CINAHL Plus, and PsychInfo were utilized to examine peer-reviewed publications between 2017 and 2023. Data extracted included implementation plans, outcome measures, intervention details, and results of the study. The Critical Appraisal Skills Programme was used to assess the quality of the evidence presented. RESULTS: Of the 206 full-text articles assessed, three were included in this review. Educational interventions about prostate cancer knowledge with shared and informed decision-making (IDM) features, as well as counseling, treatment options, and healthcare navigation information, may increase prostate cancer screening participation among Black men. Additionally, health partner educational interventions may not improve IDM related to screening participation. The quality of the evidence presented in each article was valid and potentially impactful to the community. DISCUSSION: Black men face various social determinants of health barriers related to racism, discrimination, cost of health services, time away from work, and lack of trust in the healthcare system when making health-related decisions, including prostate cancer screening participation. A multifactorial intervention approach is required to address these inequities faced by Black men especially as prostate cancer is curable when diagnosed at an earlier stage.

16.
Scand J Psychol ; 2024 Jul 10.
Artículo en Inglés | MEDLINE | ID: mdl-38988150

RESUMEN

INTRODUCTION: The proposed concept of secure/insecure lifeattachment reflects the experience of the world and life as a good (or insecure/threatening) place to be. The present article describes the theoretical foundation, development, and validation of a revised measure that captures the phenomenon of secure/insecure life attachment. The revised scale consists of seven dimensions: (1) Coexistence, (2) Reliability, (3) Safetiness, (4) Integration, (5) Inclusion, (6) Participation, and (7) Deliberation. METHODS: In three studies (N = 1,059), we examined the factor structure and the convergent and predictive validity of the Life Attachment Scale-Revised (LAS-R). RESULTS: Our results support a seven-factor structure of the scale, reflecting the aforementioned dimensions. Furthermore, convergent and predictive validity were established through correlations with related concepts of life satisfaction, flourishing, openness to the future, and perceived stress. CONCLUSION: We have devised and substantiated a scale adept at gauging dimensions of secure and insecure/disordered life attachment. Empirical evidence from statistical analyses supports the assumption that the LAS-R is psychometrically sound, establishing its reliability and validity as a dependable instrument. Thus, the scale has promising implications for developing the empirical base for research in many areas of psychology, sociology, and the social sciences.

17.
BMC Health Serv Res ; 24(1): 799, 2024 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-38992652

RESUMEN

BACKGROUND: The Norwegian colorectal cancer (CRC) screening program started in May 2022. Inequalities in CRC screening participation are a challenge, and we expect that certain groups, such as immigrants, are at risk of non-participation. Prior to the start of the national screening program, a pilot study showed lower participation rates in CRC screening among immigrants from Pakistan. These immigrants are a populous group with a long history in Norway and yet have a relatively low participation rate also in other cancer screening programs. The purpose of this study was to identify and explore perspectives and factors influencing CRC screening participation among immigrants from Pakistan in Norway. MATERIALS AND METHODS: In this study we used a qualitative study design and conducted 12 individual interviews with Pakistani immigrants aged between 50 and 65 years. The participants varied in terms of gender, age, education, work, residence time in Norway and familiarity with the Norwegian language and culture. We performed thematic analysis with health literacy as a theoretical framework to understand Pakistani immigrants' perspectives on CRC screening. RESULTS: We identified four main themes: Health-related knowledge, the health care system, screening, and social factors. Within these themes we identified several factors that affect Pakistani immigrants' accessibility to CRC screening. These factors included knowledge of the causes and development of cancer, sources of health-related information, the general practitioner's role, understanding of screening and the intention behind it, language skills and religious beliefs. CONCLUSION: There are many factors influencing Pakistani immigrants' decision of participation in CRC screening. The roles of the general practitioner and adult children are particularly important. Key elements to improve accessibility to CRC screening and enable informed participation for Pakistani immigrants are measures that improve personal and organizational health literacy.


Asunto(s)
Neoplasias Colorrectales , Detección Precoz del Cáncer , Emigrantes e Inmigrantes , Accesibilidad a los Servicios de Salud , Investigación Cualitativa , Humanos , Noruega , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/etnología , Pakistán/etnología , Emigrantes e Inmigrantes/psicología , Emigrantes e Inmigrantes/estadística & datos numéricos , Masculino , Femenino , Persona de Mediana Edad , Detección Precoz del Cáncer/estadística & datos numéricos , Detección Precoz del Cáncer/psicología , Anciano , Conocimientos, Actitudes y Práctica en Salud , Entrevistas como Asunto
18.
Res Involv Engagem ; 10(1): 72, 2024 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-38992779

RESUMEN

BACKGROUND: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. METHODS: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. RESULTS: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. CONCLUSION: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.


Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research.

19.
Front Rehabil Sci ; 5: 1399818, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38994330

RESUMEN

Introduction: The increased focus among researchers and professionals on participation as an explicit intervention outcome has prompted a paradigm shift in both thought and practice. However, much research centers on altering participation outcomes in specific life situations and stages. This discussion paper considers "participation as a means" in pediatric rehabilitation and special education interventions, emphasizing its role in achieving lasting outcomes. Method: This paper uses a Venn diagram approach to consider relations between three core concepts-participation, intervention, and outcomes-and their intersection. The paper's central theme revolves around the intersection of these concepts, wherein participation serves as a means to achieve enduring participation outcomes within the realms of rehabilitation and special education. The discussion is supported by contemporary empirical work and from literature identified in two recent scoping reviews focusing on the intervention process. Results: Achieving enduring participation outcomes through participation in the intervention process necessitates creating a learning experience, with children and families actively participating in every step: identifying participation issues, seeking explanations, prioritizing intervention goals, selecting methods, implementing interventions, and evaluating the process and outcomes. Discussion: This structured approach supports professionals and researchers to foster the skills and capacity required for lasting participation outcomes for children with impairments.

20.
Occup Ther Health Care ; : 1-19, 2024 Jul 12.
Artículo en Inglés | MEDLINE | ID: mdl-38995863

RESUMEN

Occupational therapists address physical environments, which can improve outcomes for youth with asthma, a prevalent chronic childhood illness. This study examines pediatric occupational therapists' perceptions of their role supporting youth with asthma, perceived usability of an occupational therapy asthma home assessment, and the impact of asthma on participation. A cross-sectional exploratory survey of 171 participants found that despite lack of tools for asthma trigger reduction assessment and intervention, therapists believe it is within their scope of practice and that they would benefit from an occupational therapy-based asthma tool. Occupational therapists should be members of multidisciplinary asthma teams, and assess and address environmental triggers.

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