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1.
Qual Health Res ; : 10497323241235882, 2024 Mar 14.
Artículo en Inglés | MEDLINE | ID: mdl-38485670

RESUMEN

There is an increasing emphasis on transdisciplinary research to address the complex challenges faced by health systems. However, research has not adequately explored how members of transdisciplinary research teams perceive, understand, and promote transdisciplinary collaboration. As such, there is a need to investigate collaborative behaviors, knowledge, and the impacts of transdisciplinary research. To address this gap, we conducted a longitudinal realist evaluation of transdisciplinary collaboration within a 5-year National Health and Medical Research Council-funded Center of Research Excellence in Transdisciplinary Frailty Research. The current study aimed to explore researchers' perceptions and promotion of transdisciplinary research specifically within the context of frailty research using qualitative methods. Participants described transdisciplinary research as a collaborative and integrative approach that involves individuals from various disciplines working together to tackle complex research problems. However, participants often used terms like interdisciplinary and multidisciplinary interchangeably, indicating that a shared understanding of transdisciplinary research is needed. Barriers to transdisciplinary collaboration included time constraints, geographical distance, and entrenched collaboration patterns. To overcome these challenges, participants suggested implementing strategies such as creating a shared vision and goals, establishing appropriate collaboration systems and structures, and role modeling collaborative behaviors, values, and attitudes. Our findings underscore the need for practical knowledge in developing transdisciplinary collaboration and leadership skills across different career stages. In the absence of formal training, sustained and immersive programs that connect researchers with peers, educators, and role models from various disciplines and provide experiential learning opportunities, may be valuable in fostering successful transdisciplinary collaboration.

2.
BMC Health Serv Res ; 24(1): 13, 2024 Jan 04.
Artículo en Inglés | MEDLINE | ID: mdl-38178141

RESUMEN

BACKGROUND: Despite growing evidence of the potential of arts-based modalities to translate knowledge and spark discussion on complex issues, applications to health policy are rare. This study explored the potential of a research-based theatrical video to increase public capacity and motivation to engage with the complex issues that make Emergency Department wait times such an intractable problem. METHODS: Larry Saves the Canadian Healthcare System is a digital musical micro-series developed from extensive research examining system-level causes of Emergency crowding and the ineffectiveness of prevailing approaches. We released individual episodes and a revised full-length version on YouTube, using organic promotion strategies and paid advertising. We used YouTube Analytics to track views, engagement and viewer demographics, and content-analyzed viewer comments. We also conducted five university-based screenings; 92 students completed questionnaires, rating Larry on 16 descriptors using a 7-point Likert scale. RESULTS: From June 2022 through May 2023, Larry garnered over 100,000 views (76,752 of the full-length version, 35,535 of episodes), 1329 likes, 2780 shares, and 139 comments. Views and watch time were higher among women and positively associated with age. Among YouTube comments, the predominating themes were praise for the video and criticism of the healthcare system. Many commenters applauded the show's accuracy, humor, and/or resonance with their experience; several shared healthcare horror stories. Students overwhelmingly agreed with all positive and disagreed with all negative descriptors, and nearly unanimously deemed the video informative, thought-provoking, and entertaining. Most also affirmed that it had increased their knowledge, interest, and confidence to participate in discussions about healthcare issues. Neither gender, primary language, nor employment in healthcare predicted ratings, but graduate students and those 25+ years old evaluated the video most positively. DISCUSSION: These findings highlight the promise of research-informed musical satire to inform and invigorate discourse on an urgent health policy problem. Larry has reached tens of thousands of viewers, garnered excellent feedback, and received high student ratings. Further research should directly assess educational and behavioural outcomes and explore what facilitative strategies could maximize this knowledge translation product's potential to foster informed, impactful policy dialogue.


Asunto(s)
Atención a la Salud , Servicio de Urgencia en Hospital , Medios de Comunicación Sociales , Humanos , Canadá , Grabación en Video , Salas de Espera
3.
BMJ Open ; 14(1): e075501, 2024 01 12.
Artículo en Inglés | MEDLINE | ID: mdl-38216190

RESUMEN

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.


Asunto(s)
Participación de la Comunidad , Toma de Decisiones , Humanos , Anciano , Participación de la Comunidad/métodos , Formulación de Políticas , Políticas
4.
Stud Health Technol Inform ; 310: 389-393, 2024 Jan 25.
Artículo en Inglés | MEDLINE | ID: mdl-38269831

RESUMEN

Evidence-based online resources aim to combat vulnerabilities associated with health misinformation, evidence misalignment, and science illiteracy. Yet, it is a challenge to measure and demonstrate their impacts beyond looking at proxies for success (e.g., numbers of followers and likes). Addressing this gap, we introduce an emerging evaluation and verify its functionality in delivering optimal impact and sustainability measures for an evidence-based video resource on frailty.


Asunto(s)
Emociones , Fragilidad , Humanos
5.
JMIR Res Protoc ; 12: e50208, 2023 Nov 07.
Artículo en Inglés | MEDLINE | ID: mdl-37934557

RESUMEN

BACKGROUND: During the COVID-19 pandemic, eHealth services enabled providers to reach families despite widespread social distancing restrictions. However, their rapid adoption often occurred without community partners' involvement and without an understanding of how they prioritize aspects of their mental health and associated service provision, both of which promote family and community-centered health care delivery. Establishing priorities in health care is essential for developing meaningful and reliable health services. As such, there is an urgent need to understand how eHealth service users, especially families who may have historically faced oppression and systemic barriers to service access, can best benefit from them. Arts-based approaches can elicit an understanding of priorities by providing an engaging and expressive means of moving beyond readily expressible discursive language and stimulating meaningful dialogue reflective of participants' lived experiences. OBJECTIVE: The purpose of this research is to determine the priorities and preferences of youth; parents or caregivers; newcomers and immigrants; and Indigenous community members regarding the use of eHealth in supporting their mental health using an innovative arts-based priority-setting method. METHODS: This study uses a mixed-methods approach combining qualitative, quantitative, and arts-based research. It follows a survey used to identify key knowledge partners who are interested in improving eHealth services for mental health support in Manitoba, Canada. Knowledge partners interested in group-based priority setting will be contacted to participate. We will facilitate approximately two focus groups across each subgroup of youth, parents or caregivers, newcomers or immigrants, and Indigenous community members using an integrative, quantitatively anchored arts-based method termed the "Circle of Importance" to understand participants' mental health priorities and how eHealth or technology may support their mental well-being. The Circle of Importance involves placing small objects, whose meaning is determined by participants, on a visual board with concentric circles that correspond to a 5-point Likert scale of importance. Following each focus group, we will evaluate participants' and focus group facilitators' experiences of the Circle of Importance using a survey and follow-up structured in-person interviews to garner how we can improve the arts-based approach used in the focus groups. RESULTS: The PRIME (Partnering for Research Innovation in Mental Health through eHealth Excellence) theme received institutional ethics approval on August 23, 2023. Data collection is projected for August 2023, with follow-up focus groups occurring in early 2024 as required. Data analysis will occur immediately following data collection. CONCLUSIONS: Findings will directly inform a multiyear applied research agenda for PRIME aimed at improving mental health services through engaging key knowledge partners. The results may inform how arts-based methods in a priority setting can reflect aspects of experience beyond the capacities of qualitative or quantitative methods alone, and whether this approach aligns well with a positive experience of research participation. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50208.

6.
Health Expect ; 2023 Oct 13.
Artículo en Inglés | MEDLINE | ID: mdl-37830439

RESUMEN

BACKGROUND: Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person-centred approach that considers the individual's goals, preferences and priorities. However, ensuring high-quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. OBJECTIVE: To codesign a communication and goal-setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. DESIGN: We drew on an experience-based codesign approach to develop My Wellbeing Journal. This article reports on the final end-user feedback, which was collected via an online survey with older adults and their carers. SETTING AND PARTICIPANTS: Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. RESULTS: A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. DISCUSSION AND CONCLUSIONS: Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person-centred, goal-oriented care for older adults with chronic conditions and multimorbidity. PATIENT OR PUBLIC CONTRIBUTION: Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability.

7.
Syst Rev ; 12(1): 90, 2023 06 02.
Artículo en Inglés | MEDLINE | ID: mdl-37268979

RESUMEN

BACKGROUND: The chronicity of congenital heart disease (CHD) comes with significant psychosocial consequences for both children and adolescents living with CHD and their primary caregivers. Children and adolescents living with CHD undergo multiple traumatizing invasive surgical and medical procedures, struggle with disabilities resulting from their CHD, face unfair scrutiny and marginalization, and are at risk for mental health issues. Primary caregivers of children and adolescents living with CHD deal with increased stress, fear, anxiety, depression, and financial burden. The overarching objectives of this scoping review are to (1) determine the current state of knowledge on negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high-income countries and (2) inform research aimed at developing interventions in high-income countries to decrease the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers. METHODS: Databases and grey literature searched will include MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, Scopus, ProQuest Theses and Dissertations, and Google advanced search. Citation mining of included studies and relevant review articles will be completed. Studies will be screened by title and abstract and then full text by two independent reviewers, using pre-defined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies by two reviewers using MMAT Version 2018. Studies will not be excluded due to quality assessment. Data from all eligible studies will be independently extracted by the two reviewers and verified by consensus. Data will be presented and synthesized in evidence tables to examine potential patterns. DISCUSSION: The results of this review will provide recognition of the psychosocial impact of CHD and its treatments on children and adolescents living with CHD and their primary caregivers. It will also highlight interventions that have been developed to decrease these psychosocial consequences. The results from this review will inform a future integrated knowledge translation study by the first author aimed at decreasing one or more of the negative psychosocial consequences experienced by children or adolescents living with CHD and their primary caregivers. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (OSF) Registration, https://doi.org/10.17605/OSF.IO/ZXYGW.


Asunto(s)
Personas con Discapacidad , Cardiopatías Congénitas , Humanos , Niño , Adolescente , Cuidadores/psicología , Ansiedad/terapia , Depresión/terapia , Literatura de Revisión como Asunto
9.
Health Res Policy Syst ; 21(1): 20, 2023 Mar 21.
Artículo en Inglés | MEDLINE | ID: mdl-36944997

RESUMEN

BACKGROUND: Transdisciplinary research and knowledge translation are increasingly regarded as key concepts underpinning applied research across the health and social sciences, due to their presumed potential in addressing complex, "wicked" problems and improving the use of research in practice and policy, respectively. Despite sharing an impact mandate, the relationship between transdisciplinary research collaboration and knowledge translation remains unclear. In response, we examined the relationship between transdisciplinary collaboration and knowledge translation to generate these understandings with a view towards maximizing the impact of collaborative efforts. METHODS: We undertook a realist evaluation and longitudinal case study of a 5-year National Health and Medical Research Council-funded Centre of Research Excellence in Transdisciplinary Frailty Research. Data were collected between February 2017 and March 2020 over three rounds of theory development, refinement and testing using interviews, observation, document review and visual elicitation as data sources. The Human Research Ethics Committee of the University of Adelaide approved this study. RESULTS: Iterative analysis of narrative interviews and visual data led to the development of three overarching programme theories explicating the reciprocal relationship between KT understandings and transdisciplinary team process. These programme theories revolve around the concept of a network, which we define in alignment with extant theoretical literature on network mechanisms and complex networks as graphically representable networks of agents/people (nodes) joined by social relationships (links). Our findings demonstrate that under the right contextual conditions, transdisciplinary team members respond through an improved ability to (1) navigate the network, (2) negotiate the network and (3) mobilize the network. CONCLUSIONS: This research demonstrates the reciprocity and mutually supportive relationship between transdisciplinary research and knowledge translation. Our findings suggest that embedding a collaborative knowledge translation framework and providing resources such as facilitation and distributed leadership within a transdisciplinary team can improve collaboration and support transdisciplinary research objectives.


Asunto(s)
Investigación Interdisciplinaria , Ciencia Traslacional Biomédica , Humanos , Aprendizaje , Liderazgo , Red Social
11.
Int J Health Policy Manag ; 12: 7694, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38618817

RESUMEN

Brown et al show that research investments in an organization with a research and translation mandate can make important gains for research impact across domains, including quality of care and patient outcomes. Their multi-stage mixed methods evaluation provides insight into research capacity development in rural health systems in Australia and draws attention towards persistent geographic inequities. In extension of this important contribution, here, a focus on the "what and the why" of embedded research is offered. Specific attention is paid to the sustainability potentials of systematized data capture systems, funding-operational mandate alignments, researcher-scientist career pathways, and networked approaches to mentorship.


Asunto(s)
Aprendizaje del Sistema de Salud , Humanos , Australia , Servicios de Salud , Hospitales , Inversiones en Salud
12.
Front Health Serv ; 3: 1068297, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38174215

RESUMEN

There is a global movement towards stakeholder engagement in healthcare research. This movement has been catalyzed by a need to create context relevant evidence of maximal utility to health service provision and policy. The concept of "co-implementation" has potential to inform and extend these discussions of partnership and to complement the growing literature on collaborative implementation. Attending to this concept may preempt conceptual confusion and provide opportunities for sustainable and context-responsive embedded research necessary for the strengthening of health systems. In this perspective article, I seek to advance the discussion of co-implementation through an examination of the concept and through consideration of it merits to the health sciences.

13.
Qual Health Res ; 32(13): 1935-1951, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-36062369

RESUMEN

Online peer-to-peer communities provide environments in which people with similar health concerns can interact and exchange information that can support self-care of long-term conditions. However, current theories have not adequately accounted for how self-care support is enacted in online communities. We conducted an observational netnography to identify and analyze posts in a publicly accessible online community (discussion forum boards) designed for older people. A Straussian grounded theory approach was used to examine 659 posts in health-related message boards. Self-care support involved the construction of three interrelated identities: (1) the support seeking self, in which members described problems and requested information; (2) the empathizing self, in which they described similar experiences and offered support; and (3) the influencing self, in which they provided information or advice. Online communities appear to be an important source of peer support and information and may be a cost-effective approach to supplement standard care.


Asunto(s)
Autocuidado , Apoyo Social , Humanos , Anciano , Grupo Paritario , Teoría Fundamentada , Internet
14.
BMC Prim Care ; 23(1): 160, 2022 06 27.
Artículo en Inglés | MEDLINE | ID: mdl-35754037

RESUMEN

BACKGROUND: Frailty is a highly prevalent clinical syndrome increasing older people's vulnerability to risk of adverse outcomes. Better frailty identification through expanded screening implementation has been advocated within general practice settings, both internationally and within Australia. However, little is known about practitioner perceptions of the feasibility of specific instruments, and the underlying motivations behind those perceptions. Consequently, the purpose of this study was to explore the attitudes and perceptions of a convenience and volunteer sample of Australian general practitioners (GPs) and practice nurses (PNs) towards common frailty screening instruments. METHODS: The feasibility of several frailty screening instruments (PRISMA-7 [P7], Edmonton Frail Scale [EFS], FRAIL Questionnaire [FQ], Gait Speed Test [GST], Groningen Frailty Indicator [GFI], Kihon Checklist [KC] and Timed Up and Go [TUG]) to 43 Australian GPs and PNs was assessed. The study adopted a concurrent embedded mixed-methods design incorporating quantitative (ranking exercise) and qualitative (content analysis) data collection integrated during the analysis phase. RESULTS: Practitioners assessed multi-dimensional instruments (EFS, GFI, KC) as having relatively higher clinical utility, better integration into existing assessment processes and stronger links to intervention over uni-dimensional (GST, TUG) and simple (FQ, P7) instruments. CONCLUSIONS: While existing frailty screening instruments show promise as an initial step in supporting better care for older people, all the included instruments were associated with perceived advantages and disadvantages. Ultimately, clinicians will need to weigh several factors in their selection of the optimal screening instrument. Further translational research, with a focus on contextual fit, is needed to support clinical decision-making on the selection of instruments for frailty screening.


Asunto(s)
Fragilidad , Medicina General , Anciano , Australia/epidemiología , Estudios de Factibilidad , Anciano Frágil , Fragilidad/diagnóstico , Evaluación Geriátrica/métodos , Humanos
15.
Front Endocrinol (Lausanne) ; 13: 1063859, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36686448

RESUMEN

Introduction: For people living with type 1 diabetes (T1D) the challenge of increasing daily physical activity (PA) is compounded by the increased risks of hypoglycemia and glucose variability. Little information exists on the lived experience of overcoming these barriers and adopting and maintaining an active lifestyle while living with T1D. Research Design and Methods: We conducted a patient-led qualitative study consisting of semi-structured interviews or focus groups with 22 individuals at least 16 years old living with T1D. We used existing patient co-researcher networks and snowball sampling to obtain a sample of individuals who reported being regularly physically active and had been diagnosed with T1D for at least one year. We used an interpretive description analysis to generate themes and strategies associated with maintaining an active lifestyle while living with T1D. We involved patient co-researchers in study design, data collection, and interpretation. Results: 14 self-identified women and 8 self-identified men (ages 19-62, median age 32 years) completed the study, led by either a researcher, or a patient co-researcher and research assistant regarding their strategies for maintaining an active lifestyle. We identified five themes that facilitate regular sustained PA: (1) Structure and organization are important to adopt safe PA in daily life "I can't do spontaneous exercise. I actually need a couple hours of warning minimum"; (2) Trial and error to learn how their body responds to PA and food "Once you put the time and effort into learning, you will have greater success"; (3) Psychosocial aspects of PA "…because it's not just your body, it's your soul, it's your mind that exercise is for"; (4) Diabetes technology and (5) Education and peer support. Strategies to overcome barriers included (1) Technology; (2) Integrating psychosocial facilitators; (3) Insulin and carbohydrate adjustments; and (4) Planning for exercise. Conclusions: Living an active lifestyle with T1D is facilitated by dedicated structure and organization of routines, accepting the need for trial and error to understand the personalized glycemic responses to PA and careful use of food to prevent hypoglycemia. These themes could inform clinical practice guidelines or future trials that include PA interventions.


Asunto(s)
Diabetes Mellitus Tipo 1 , Hipoglucemia , Masculino , Humanos , Femenino , Adulto , Adulto Joven , Persona de Mediana Edad , Adolescente , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/psicología , Ejercicio Físico/fisiología , Investigación Cualitativa , Estilo de Vida , Hipoglucemia/prevención & control
16.
Int J Nurs Knowl ; 33(1): 57-63, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-34089240

RESUMEN

PURPOSE: To describe the nursing interventions provided to patients with COVID-19 using the Nursing Interventions Classification. METHOD: This is a retrospective study involving the review of 1,344 patient records of adults admitted to a specialty hospital for COVID-19 in Tabriz, Iran. The nursing intervention was used to classify documented nursing care and interventions provided to COVID-19-positive patients from February 20 to August 20, 2020. Data were analyzed descriptively using SPSS16. FINDINGS: The 10 most frequently documented nursing interventions across in-patient (ward) and intensive care unit (ICU) contexts included Admission Care (7310), Environmental Management (6486), Health Education (5510), Infection Protection (6550), Medication Administration (2300), Positioning (0840), Respiratory Monitoring (3350), Vital Signs Monitoring (6680), Nausea Management (1450), and Diarrhea Management (0460). No records of distraction, relaxation techniques, or massage for anxiety reduction were documented. CONCLUSION: This study used a common language to describe nursing interventions for patients with COVID-19 admitted to a tertiary hospital. IMPLICATIONS FOR NURSING PRACTICE: The most commonly identified nursing interventions for COVID-19 identified in this study provide evidence-based insight into nurses' scope of practice in the COVID-19 in-patient context.


Asunto(s)
COVID-19 , Terminología Normalizada de Enfermería , Adulto , Humanos , Registros Médicos , Estudios Retrospectivos , SARS-CoV-2
17.
Healthcare (Basel) ; 9(5)2021 May 12.
Artículo en Inglés | MEDLINE | ID: mdl-34066004

RESUMEN

There is a need for intervention research to understand how music-based group activities foster engagement in social interactions and relationship-building among care home residents living with moderate to severe dementia. The purpose of this conceptual paper is to describe the design of 'Music Connects Us', a music-based group activity intervention. Music Connects Us primarily aims to promote social connectedness and quality of life among care home residents living with moderate to severe dementia through engagement in music-making, supporting positive social interactions to develop intimate connections with others. To develop Music Connects Us, we adapted the 'Music for Life' program offered by Wigmore Hall in the United Kingdom, applying an intervention mapping framework and principles of engaged scholarship. This paper describes in detail the Music Connects Us program, our adaptation approach, and key adaptations made, which included: framing the project to focus on the engagement of the person living with dementia to ameliorate loneliness; inclusion of student and other community-based musicians; reduced requirements for care staff participation; and the development of a detailed musician training approach to prepare musicians to deliver the program in Canada. Description of the development, features, and rationale for Music Connects Us will support its replication in future research aimed to tests its effects and its use in clinical practice.

18.
BMJ Open ; 11(5): e041530, 2021 05 04.
Artículo en Inglés | MEDLINE | ID: mdl-33947723

RESUMEN

INTRODUCTION: Despite recognition of the importance of patient engagement in research and knowledge translation, systematic approaches to engagement and co-ideation remain limited. Living labs are collaborative knowledge sharing systems that use multimethod, user-centred approaches that hold potential to catalyse these aims. However, their use in healthcare is limited, and no living lab has been developed in paediatric rehabilitation. In response to this gap and to propel innovative knowledge exchange, we propose a mixed methods study to co-develop a living lab prototype (ie, preliminary infrastructure with opportunity for scale up) in paediatric rehabilitation, with relevance to other healthcare contexts. METHODS: An exploratory sequential mixed methods study will be undertaken to determine research and knowledge exchange priorities and to inform the development of the living lab prototype. Stage 1: we will use a multipronged approach to sample 18-21 youth with developmental differences or rehabilitation needs, their youth siblings and parents/guardians from a provincial paediatric rehabilitation centre, to participate in qualitative and arts-based data collection. Data will provide insight into desirable features of the living lab. Stage 2: E-surveys to youth, siblings, parents/guardians and clinicians who receive or provide services at this same centre will expand on priorities and living lab features. Stage 3: integrated analysis will inform the living lab prototype development. ANALYSIS: Inductive thematic analysis using interpretive description, integrated analysis of visual data and descriptive and content analysis of e-survey data will be undertaken. Joint displays will facilitate data integration. Priorities will be identified using a modified rank-order method for each key living lab domain. ETHICS AND DISSEMINATION: Institutional ethics and site approval have been granted. A parent advisory group and rehabilitation engineering partners will confer on data and inform the development of the living lab prototype. User engagement with the prototype will occur during an online or in-person event, and findings shared through non-technical research summaries, journal articles and academic presentations.


Asunto(s)
Instituciones de Salud , Participación del Paciente , Adolescente , Niño , Humanos , Organizaciones , Encuestas y Cuestionarios , Investigación Biomédica Traslacional
19.
J Adv Nurs ; 77(7): 3218-3225, 2021 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-33855741

RESUMEN

AIMS: The aim of this study is to generate an in-depth understanding of youth perceptions and experiences of living with type 2 diabetes to inform knowledge translation, research and intervention development. DESIGN: Interpretive descriptive qualitative study. METHODS: Twenty to 25 youth aged 10-18 years with a diagnosis of type 2 diabetes will be purposively recruited through the Diabetes Education Resource for Children and Adolescents in Winnipeg, Manitoba, and through the Improving Renal Complications in Adolescents With Type 2 Diabetes Through the REsearch [iCARE] cohort. Socio-demographic information will be collected. Semi-structured interviews will occur iteratively with inductive thematic analysis. Data will be professionally transcribed and managed using NVivo 1.0 software. The University Ethics Committee approved this study (May 2020). DISCUSSION: There is a critical gap in understanding youth experiences of type 2 diabetes. Research involving youth with type 2 diabetes is predominantly quantitative in nature, largely reflecting risk factors, underlying mechanisms and treatment outcomes associated with diabetes management. In-depth qualitative research on youth experiences can help identify youth priorities, provide insight into critical misalignments between stakeholder perspectives, and drive forward a more consolidated youth-centred research agenda. IMPACT: Understanding and applying knowledge of youth experiences is critical as the prevalence of, and challenges associated with, youth onset type 2 diabetes continues to increase worldwide. This research will generate a robust interpretive description of youth lived experiences and perceptions of type 2 diabetes where such research is lacking, to inform basic and applied research within an interdisciplinary investigative and clinical research team with relevance to other jurisdictions. In response to calls for youth-oriented research in type 2 diabetes, this work will catalyse collaborative knowledge translation using creative and youth-directed initiatives.


Asunto(s)
Diabetes Mellitus Tipo 2 , Adolescente , Niño , Humanos , Manitoba , Percepción , Investigación Cualitativa , Investigación Biomédica Traslacional
20.
Patient Educ Couns ; 104(10): 2439-2452, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-33658141

RESUMEN

OBJECTIVE: To synthesise a body of fine-grained observational research on communication between healthcare professionals (HCPs), older adults, and carers regarding self-management goals and actions. METHODS: We conducted a systematic review, searching nine electronic databases and the grey literature. Two reviewers independently selected for inclusion following a two-stage process and studies and discrepancies were resolved through consultation with the review team. RESULTS: 898 records were retrieved, and eight studies were included in the review. Aggregative thematic analysis resulted in 13 categories of communication practices across three decision-making domains: (1) initiating: actions occurring prior to the commitment point; (2) proposing: putting forward a course of action; and (3) committing and closing: committing (or not) to the course of action. CONCLUSIONS: Despite an increasing emphasis on the importance of personalised care planning and shared decision-making (SDM) to support older people's health and wellbeing, HCPs did not consistently practice this approach and, in some cases, worked in opposition to it. PRACTICE IMPLICATIONS: We encourage HCPs to prepare older adults to engage actively with SDM and the goal setting process by employing patient-centred communication resources. These could assist with identifying different types of goals that are realistic and relevant to patients in daily life.


Asunto(s)
Automanejo , Anciano , Cuidadores , Comunicación , Toma de Decisiones Conjunta , Personal de Salud , Humanos
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