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1.
Arch Phys Med Rehabil ; 102(4): 656-663, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33129763

RESUMO

OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.


Assuntos
Consenso , Pesquisa sobre Serviços de Saúde , Disseminação de Informação , Traumatismos da Medula Espinal/reabilitação , Pesquisa Translacional Biomédica , Humanos
2.
Spinal Cord ; 59(12): 1301-1308, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34732859

RESUMO

STUDY DESIGN: A generic qualitative design. OBJECTIVES: To obtain a deeper understanding of the outcomes of spinal cord injury (SCI) peer mentorship programs delivered by community-based organizations. SETTING: Peer mentorship programs of community-based SCI organizations METHODS: We interviewed 36 individuals who shared their experiences of SCI peer mentorship from the perspective of a peer mentee, peer mentor, or family member of a peer mentee/mentor, or staff of SCI community-based organizations. Interview data were analyzed using an inductive thematic analysis approach. RESULTS: Four overarching themes with sub-themes were identified. (1) Positive outcomes for mentees such as understanding, emotional outlet/psychological support, inspiration/hope, and belonging. (2) Positive outcomes for mentors such as gaining gratitude, confidence, pride, and personal growth. (3) Reciprocity in positive/negative outcomes for mentors and mentees, such as shared learning and a lack of connection. (4) Negative outcomes for mentors such as impact of negativity, emotional toll, and time/energy demands. CONCLUSIONS: Peer mentorship programs delivered by community-based SCI organizations are important, impactful resources for individuals with SCI who engage in these programs. These results provide insights into the variety of positive and negative outcomes linked with these programs.


Assuntos
Mentores , Traumatismos da Medula Espinal , Canadá , Humanos , Mentores/psicologia , Grupo Associado , Traumatismos da Medula Espinal/psicologia
3.
Spinal Cord ; 59(12): 1285-1293, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34645921

RESUMO

STUDY DESIGN: The study used a generic qualitative design. OBJECTIVES: This article set out to garner knowledge of peer mentorship programs delivered by SCI community-based organizations by interviewing people who are directly and in-directly involved with these programs. SETTING: Four provincial community-based SCI organizations across Canada. An integrated knowledge translation approach was applied in which researchers and SCI organization members co-constructed, co-conducted, and co-interpreted the study. METHODS: Thirty-six individuals (N = 36, including peer mentees, mentors, family members of mentees, and organizational staff) from four provincial SCI community-based organizations were interviewed. The participants' perspectives were combined and analyzed using a thematic analysis. RESULTS: Two overarching themes with respective subthemes were identified. Mentorship Mechanics describes the characteristics of mentors and mentees and components of the mentor-mentee relationship (e.g., establish a common ground). Under the theme Peer Mentorship Program Structures, participants described the organizational considerations for peer mentorship programs (e.g., format), and organizational responsibilities (e.g., funding; creating a peer mentorship team). CONCLUSION: This study provides an in-depth look at the characteristics of peer mentorship programs that are delivered by community-based organizations in Canada and highlights the complexity of delivering such programs.


Assuntos
Mentores , Traumatismos da Medula Espinal , Canadá , Humanos , Grupo Associado , Pesquisadores
4.
Spinal Cord ; 58(11): 1206-1215, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32457514

RESUMO

STUDY DESIGN: Generic qualitative design. OBJECTIVES: To explore how Chinese adults living with spinal cord injury (SCI) viewed the prospect of inpatient peer support programs within a rehabilitation setting. SETTING: Hospital in China. METHODS: A purposive sample of adult inpatients with SCI (N = 6) currently undergoing rehabilitation was recruited. Each participant was interviewed twice. Twelve interview transcripts were analyzed using a thematic method. RESULTS: Five higher-order themes were developed. First, participants had unique backgrounds and personal lives before and after their SCI and reported frustrations about their lives resulting from their SCI. Second, participants reported varying degrees of satisfaction with their rehabilitation and identified the facilitators and barriers to their rehabilitation. Third, their perspectives on peer support were shaped by their rehabilitation goals. For example, participants who solely focused on the recovery of physical functioning noted that peers could help to supplement existing rehabilitation programming by guiding their rehabilitation exercises. Participants who concentrated on their future lives believed peers could teach them new skills to facilitate their integration in the community. However, some participants felt they could not trust peers' advice because peers are not healthcare providers. Fourth, peer support delivery options varied from online chat groups (i.e., WeChat), in-person conversations, and mentoring lectures. Finally, anticipated outcomes were related to obtaining practical and emotional support from peers, being motivated, and feeling understood. CONCLUSIONS: Participants harbored mixed views on potential use-value and necessity of hospital-based peer support programs, which could inform future utilization of SCI peer support within Chinese hospitals.


Assuntos
Pacientes Internados , Traumatismos da Medula Espinal , Adulto , China , Hospitais , Humanos , Grupo Associado
5.
J Pediatr ; 165(3): 516-21, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25043155

RESUMO

OBJECTIVE: To determine whether time spent outdoors was associated with increased moderate-to-vigorous physical activity (MVPA) and related health benefits in youth. STUDY DESIGN: We performed a cross-sectional study of 306 youth aged 13.6 ± 1.4 years. The exposure of interest was self-reported time spent outdoors after school, stratified into three categories: none, some, and most/all of the time. The main outcome of interest was accelerometer-derived MVPA (Actical: 1500 to >6500 counts/min). Secondary outcomes included sedentary behavior, cardiorespiratory fitness, overweight status, and blood pressure. RESULTS: Among the 306 youth studied, those who reported spending most/all of their after-school time outdoors (n = 120) participated in more MVPA (61.0 ± 24.3 vs 39.9 ± 19.1 min/day; adjusted P < .001), were more likely to achieve the recommended minimum 60 min/day of MVPA (aOR 2.8; 95% CI, 1.3-6.4), spent less time in sedentary activities (539 ± 97 min/day vs 610 ± 146 min/day; adjusted P < .001), and had higher cardiorespiratory fitness (49 ± 5 vs 45 ± 6 mL/kg/min; adjusted P < .001) than youth who reported no time outdoors (n = 52). No differences in overweight/obesity or blood pressure were observed across the groups. CONCLUSIONS: Time spent outdoors is positively associated with MVPA and cardiorespiratory fitness in youth and negatively associated with sedentary behavior. Experimental trials are needed to determine whether strategies designed to increase time spent outdoors exert a positive influence on physical activity and fitness levels in youth.


Assuntos
Coração/fisiologia , Atividade Motora , Aptidão Física , Jogos e Brinquedos , Fenômenos Fisiológicos Respiratórios , Comportamento Sedentário , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Fatores de Tempo
6.
Disabil Rehabil ; : 1-9, 2024 Feb 14.
Artigo em Inglês | MEDLINE | ID: mdl-38353259

RESUMO

PURPOSE: To develop an in-depth understanding of spinal cord injury (SCI) researchers' barriers and facilitators to deciding to use 1) a partnered approach to research and, 2) systematically developed principles for guiding Integrated Knowledge Translation (IKT) in spinal cord injury research (IKT Guiding Principles). METHODS: Qualitative interview study with North American SCI researchers who were interested in using a partnered research approach. The research was conducted using an IKT approach, and interview data were analyzed using reflexive thematic analysis. RESULTS: Thirteen SCI researchers whose research focused on prevention, clinical, rehabilitation, and/or community SCI research were interviewed. Three themes were co-constructed with partners: 1) the principles are necessary but not sufficient for the implementation of a partnered approach to research; 2) relational capacity building is needed; and 3) institutional transformation is needed to value, resource, and support meaningful engagement. CONCLUSIONS: Supporting change that enables SCI researchers to adopt and implement the IKT Guiding Principles will require transformation at the individual (theme 1), relational (theme 2), and institutional levels (theme 3). Findings provide clear, practical, and tangible actions to promote change that can support meaningful engagement in the SCI Research System.


Providing researchers with clear, procedural information and strategies to use each of the Integrated Knowledge Translation Guiding Principles in practice can support the implementation of the principles and partnered research in rehabilitation-based research.Fostering and evaluating resources and initiatives that help researchers network, build connections, and receive mentorship could help spinal cord injury researchers partner more effectively.Academic, research, and funding systems must ensure their practices, structures, culture, and processes enable, value, resource, support, and/or incentivize partnered research to ensure the research being conducted is relevant and useful in addressing the needs and priorities of research users.

7.
Transl Behav Med ; 13(11): 833-844, 2023 11 05.
Artigo em Inglês | MEDLINE | ID: mdl-37481469

RESUMO

Research partnerships, while promising for ensuring translation of relevant and useable findings, are challenging and need support. This study aimed to apply behavior change theory to understand and support researchers' adoption of a research partnership approach and the Integrated Knowledge Translation (IKT) Guiding Principles for conducting and disseminating spinal cord injury (SCI) research in partnership. Using an IKT approach, SCI researchers across Canada and the USA completed a survey (n = 22) and were interviewed (n = 13) to discuss barriers and facilitators to deciding to partner and follow the IKT Guiding Principles. The Behaviour Change Wheel, Theoretical Domains Framework (TDF), and Mode of Delivery Ontology were used to develop the survey, interview questions, and guided analyses of interview data. COM-B and TDF factors were examined using descriptive statistics and abductive analyses of barriers and facilitators of decisions to partner and/or use the IKT Guiding Principles. TDF domains from the interview transcripts were then used to identify intervention, content, and implementation options. 142 factors (79 barriers, 63 facilitators) related to deciding to partner, and 292 factors (187 barriers, 105 facilitators) related to deciding to follow the IKT Guiding Principles were identified. Barriers to partnering or use the IKT Guiding Principles were primarily related to capability and opportunity and relevant intervention options were recommended. Interventions must support researchers in understanding how to partner and use the IKT Guiding Principles while navigating a research system, which is not always supportive of the necessary time and costs required for meaningful research partnerships.


Research partnerships, which expand beyond researchers solely working with other researchers, are said to be promising for helping to move research into practice. However, there is a lack in understanding of how to support meaningful research partnerships with those who are not part of academia. This study interviewed spinal cord injury researchers to understand what helps and prevents them from deciding to partner when conducting research projects. Results suggest that researchers do not lack motivation to partner; however, their ability and opportunity to do so is lacking. Overall, support is needed to help researchers understand how to work in partnership within the research system.


Assuntos
Pesquisadores , Pesquisa Translacional Biomédica , Humanos , Canadá , Inquéritos e Questionários , Pesquisa Qualitativa
8.
Front Sports Act Living ; 4: 822547, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36187714

RESUMO

In the fall of 2013, the authors received funding to help develop and implement an afterschool wellness program alongside Indigenous youth aged 6-10 years old in the North Central neighborhood of Regina, Saskatchewan, Canada. The Growing Young Movers (GYM) afterschool program was funded, in part, as a corrective response to a broader social trend in which Indigenous youth in this neighborhood reported declining health and wellness outcomes, as well as multiple other barriers to social inclusion. This article discusses the reflections of three senior high school Indigenous youth (16-18 years old) who participated in the afterschool program as peer-mentors over a 2-year period from 2015 to 2017. Our inquiry reveals how these youth viewed the program-and their role(s) within it-in far more complex, active, and even political terms, than the program's initial framing as a physical activity-based "intervention" had anticipated. Our analysis (re)positions youth according to their own personalized voice and narratives as: cultural leaders, knowledge holders, and as agents of change in their community.

9.
Int J Health Policy Manag ; 11(8): 1401-1412, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-34060273

RESUMO

BACKGROUND: Research partnership approaches are becoming popular within spinal cord injury (SCI) health research system, providing opportunities to explore experiences of and learn from SCI research partnership champions. This study aimed to explore and describe SCI researchers' and research users' (RU') experiences with and reasons for conducting and/or disseminating (health) research in partnership in order to gain more insight into potentially ways to build capacity for and foster change to support research partnerships within a health research system. METHODS: Underpinned by a pragmatic perspective, ten semi-structured timeline interviews were conducted with researchers and RU who have experiences with SCI research partnerships. Interviews focused on experiences in participants' lives that have led them to become a person who conducts and/or disseminates research in partnership. Data were analysed using narrative thematic analysis. RESULTS: We identified three threads from participants' stories: (1) seeing and valuing different perspectives, (2) inspirational role models, and (3) relational and personal aspect of research partnerships. We identified sub-threads related to experiences that participants draw on how they came to be a person who engage in (health) research partnerships, and sub-threads related to participants' reasons for engaging in research partnerships. While most sub-threads were identified from both researchers' and RU' perspectives (eg, partnership successes and failures), some were unique for researchers (morally the right thing to do) or RU (advocating). CONCLUSION: Using a narrative and pragmatic approach, this study provided a new understanding of SCI researchers' and RU' partnership experiences over time. We found that participants' research partnership experiences and motivations align with components of leadership theories. The findings from this study may be used to inform strategies and policy programs to build capacity for conducting and disseminating (health) research in partnership, within and beyond SCI research.


Assuntos
Pesquisadores , Traumatismos da Medula Espinal , Humanos , Pesquisa Qualitativa , Traumatismos da Medula Espinal/terapia , Políticas , Liderança
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