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1.
Dig Dis Sci ; 69(1): 169-179, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37914888

RESUMO

BACKGROUND AND AIMS: In-person yoga interventions have shown feasibility and effectiveness in improving the outcomes of patients with irritable bowel syndrome (IBS), but experiences in virtual yoga interventions have not been examined. This study aimed to explore patients' experiences of a virtually delivered yoga intervention for IBS. METHODS: An embedded qualitative substudy was included in a randomized controlled trial examining the feasibility and effectiveness of a virtual yoga program among adult patients with IBS. Semi-structured interviews captured participants' past and current experiences, program satisfaction, perceived impact on IBS symptoms and overall physical and mental health, facilitators and barriers to participation, perceptions of social support and supervised learning, and input on improving future programming. Data were coded and analyzed in duplicate using NVivo 12. An analytic template based on the interview guide was developed and thematic analysis identified themes, as well as the relationship between themes and subthemes. RESULTS: Among the 14 participants (all female, mean age 47.7 years), three major themes were identified: (1) positive experience in the yoga program, (2) incorporating yoga into IBS management post-study, and (3) recommendations for program improvement. CONCLUSION: Patients with IBS experience in a virtual yoga program was positive with improvements in physical and mental health outcomes. Considering the barriers and facilitators to participating in an online yoga program along with participant recommendations may improve future intervention design and delivery to increase self-efficacy and confidence among patients with IBS.


Assuntos
Síndrome do Intestino Irritável , Yoga , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Yoga/psicologia , Síndrome do Intestino Irritável/terapia , Síndrome do Intestino Irritável/psicologia , Resultado do Tratamento , Qualidade de Vida/psicologia , Saúde Mental
2.
BMC Health Serv Res ; 23(1): 320, 2023 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-37004050

RESUMO

INTRODUCTION: During the pandemic many Canadian hospitals made significant changes to their 'open family presence' and 'visitor policies' to reduce the spread of COVID-19 by instituting restrictive or 'zero visiting' policies in healthcare facilities. These policies have the potential to create great hardship, anxiety and stress for patients, families, caregivers and frontline healthcare providers (HCPs); along with concerns about the quality and safety of patient care. The presence of family members and other caregivers as essential partners in care is an explicit expression of the philosophy of patient- and family-centred care (PFCC) in action. The purpose of this study is to increase our understanding of how changes to family presence and visiting policies and practices during the COVID-19 pandemic have impacted patients, family caregivers and frontline healthcare providers (HCPs) in acute care hospitals. METHODS: A total of 38 in-depth semi-structured interviews were conducted with patients, family caregivers and HCPs in Canadian provinces who had experience with visiting policies in acute care settings during the pandemic. COVID patients, and the caregivers of COVID patients, were excluded from this study. A maximum variation sampling strategy was used to guide the selection and recruitment of patients, family caregivers and HCPs, based on our interest in gaining a diversity of perspectives and experiences. RESULTS: Many patients, family caregivers, and HCPs view family caregiver presence as integral to PFCC, describing the essential roles played by family caregivers prior to the pandemic. There were commonalities across all three groups with respect to their perspectives on the impacts of restrictive visiting policies on patients, family caregivers and HCPs. They fell into four broad integrated categories: (1) emotional and mental health; (2) communication and advocacy; (3) safety and quality of care; and (4) PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. Recommendations for pandemic visiting policies were also identified. CONCLUSIONS: The findings from this study highlighted several impacts of restrictive family caregiver presence or visiting policies implemented during COVID-19 on patients, family caregivers and HCPs in acute healthcare settings across Canada. Participants emphasized that there is no "one-size-fits-all" caregiver presence policy that will address all patient needs. To be consistent with the practice of PFCC, patients and family caregivers are welcomed as part of the healthcare team in ways that work for them, demonstrating that flexibility in family presence and visiting policies is essential.


Assuntos
COVID-19 , Cuidadores , Humanos , Cuidadores/psicologia , COVID-19/epidemiologia , Pandemias , Canadá/epidemiologia , Políticas , Família
3.
BMC Public Health ; 21(1): 765, 2021 04 21.
Artigo em Inglês | MEDLINE | ID: mdl-33882896

RESUMO

BACKGROUND: Public support of public health measures including physical distancing, masking, staying home while sick, avoiding crowded indoor spaces and contact tracing/exposure notification applications remains critical for reducing spread of COVID-19. The aim of our work was to understand current behaviours and attitudes towards public health measures as well as barriers individuals face in following public health measures. We also sought to identify attitudes persons have regarding a COVID-19 vaccine and reasons why they may not accept a vaccine. METHODS: A cross-sectional online survey was conducted in August 2020, in Alberta, Canada in persons 18 years and older. This survey evaluated current behaviours, barriers and attitudes towards public health measures and a COVID-19 vaccine. Cluster analysis was used to identify key patterns that summarize data variations among observations. RESULTS: Of the 60 total respondents, the majority of persons were always or often physically distancing (73%), masking (65%) and staying home while sick (67%). Bars/pubs/lounges or nightclubs were visited rarely or never by 63% of respondents. Persons identified staying home while sick to provide the highest benefit (83%) in reducing spread of COVID-19. There were a large proportion of persons who had not downloaded or used a contact tracing/exposure notification app (77%) and who would not receive a COVID-19 vaccine when available (20%) or were unsure (12%). Reporting health authorities as most trusted sources of health information was associated with greater percentage of potential uptake of vaccine but not related to contact tracing app download and use. Individuals with lower concern of getting and spreading COVID-19 showed the least uptake of public health measures except for avoiding public places such as bars. Lower concern regarding COVID-19 was also associated with more negative responses to taking a potential COVID-19 vaccine. CONCLUSION: These results suggest informational frames and themes focusing on individual risks, highlighting concern for COVID-19 and targeting improving trust for health authorities may be most effective in increasing public health measures. With the ultimate goal of preventing spread of COVID-19, understanding persons' attitudes towards both public health measures and a COVID-19 vaccine remains critical to addressing barriers and implementing targeted interventions and messaging to improve uptake.


Assuntos
COVID-19/prevenção & controle , Controle de Doenças Transmissíveis , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Adulto , Alberta , Vacinas contra COVID-19 , Comunicação , Busca de Comunicante , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Vacinação/psicologia , Adulto Jovem
4.
Neuromodulation ; 23(2): 150-157, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31310417

RESUMO

OBJECTIVES: To describe the state of the literature for clinical effectiveness of neurostimulation used for the management of chronic pain. METHODS: A systematic review of spinal cord stimulation (SCS), peripheral nerve stimulation (PNS), peripheral nerve field stimulation (PNFS), and supraorbital transcutaneous electrical nerve stimulation in patients with cancer and noncancer chronic pain was conducted. MEDLINE, Embase, CINAHL, and the Cochrane CENTRAL Register of Controlled Trials were searched, using terms like "electrical stimulation therapy" and "pain management." Direction of effect, consistency across studies, and strength of evidence for effects of neurostimulation on chronic pain were narratively synthesized. RESULTS: A total of 15 randomized controlled trials (RCTs) examining SCS, 7 RCTs examining PNS/PNFS, and 1 nonrandomized trial examining supraorbital transcutaneous electrical nerve stimulation (TENS) were included. In nine SCS studies, neurostimulation had positive effects on pain. In three studies, neurostimulation did not significantly reduce pain. For PNS/PNFS, five studies found improvements in pain offered by neurostimulation; pain outcomes were not reported in two studies. In the TENS study, neurostimulation reduced headaches per month and medication consumption. Overall, 21 studies were of low or unclear risk of bias, 4 were high risk of bias, and the TENS study was not appropriate for assessment using the Cochrane Risk of Bias tool. CONCLUSIONS: A robust body of evidence examining SCS and PNS was identified. Only one study for PNFS and TENS was identified; both reported pain reductions. Generally, neurostimulation improved pain control. Future studies should examine the effectiveness of neurostimulation offered early in the trajectory of chronic pain.


Assuntos
Dor Crônica/terapia , Neuroestimuladores Implantáveis , Manejo da Dor/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Estimulação da Medula Espinal/métodos , Estimulação Elétrica Nervosa Transcutânea/métodos , Dor Crônica/diagnóstico , Terapia por Estimulação Elétrica/métodos , Humanos , Medição da Dor/métodos , Resultado do Tratamento
5.
Health Res Policy Syst ; 14(1): 78, 2016 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-27756401

RESUMO

BACKGROUND: Policy dialogues are critical for developing responsive, effective, sustainable, evidence-informed policy. Our multidisciplinary team, including researchers, physicians and senior decision-makers, comprehensively evaluated The Winnipeg Central Intake Service, a single-entry model in Winnipeg, Manitoba, to improve patient access to hip/knee replacement surgery. We used the evaluation findings to develop five evidence-informed policy directions to help improve access to scheduled clinical services across Manitoba. Using guiding principles of public participation processes, we hosted a policy roundtable meeting to engage stakeholders and use their input to refine the policy directions. Here, we report on the use and input of a policy roundtable meeting and its role in contributing to the development of evidence-informed policy. METHODS: Our evidence-informed policy directions focused on formal measurement/monitoring of quality, central intake as a preferred model for service delivery, provincial scope, transparent processes/performance indicators, and patient choice of provider. We held a policy roundtable meeting and used outcomes of facilitated discussions to refine these directions. Individuals from our team and six stakeholder groups across Manitoba participated (n = 44), including patients, family physicians, orthopaedic surgeons, surgical office assistants, Winnipeg Central Intake team, and administrators/managers. We developed evaluation forms to assess the meeting process, and collected decision-maker partners' perspectives on the value of the policy roundtable meeting and use of policy directions to improve access to scheduled clinical services after the meeting, and again 15 months later. We analyzed roundtable and evaluation data using thematic analysis to identify key themes. RESULTS: Four key findings emerged. First, participants supported all policy directions, with revisions and key implementation considerations identified. Second, participants felt the policy roundtable meeting achieved its purpose (to engage stakeholders, elicit feedback, refine policy directions). Third, our decision-maker partners' expectations of the policy roundtable meeting were exceeded; they re-affirmed its value and described the refined policy directions as foundational to establishing the vocabulary, vision and framework for improving access to scheduled clinical services in Manitoba. Finally, our adaptation of key design elements was conducive to discussion of issues surrounding access to care. CONCLUSIONS: Our policy roundtable process was an effective tool for acquiring broad input from stakeholders, refining policy directions and forming the necessary consensus starting points to move towards evidence-informed policy.


Assuntos
Comunicação , Prática Clínica Baseada em Evidências , Política de Saúde , Acessibilidade aos Serviços de Saúde , Formulação de Políticas , Artroplastia de Substituição , Consenso , Humanos , Manitoba
6.
Breast Cancer Res Treat ; 144(3): 457-65, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24596049

RESUMO

Recurrence tests, such as Adjuvant! Online and Oncotype DX, can be used to determine an individual's risk of developing recurrent cancer. These technologies are useful for helping health care practitioners make treatment recommendations. With increasing use, it is necessary to consider patients' experience with and attitudes toward risk of recurrence testing. Factors such as anxiety, influence on decision making, confidence in results, and satisfaction with testing are important to consider. To understand experiences and attitudes toward risk of recurrence testing, from the perspective of women who have used these technologies following a breast cancer diagnosis. A systematic review was completed. Eight multidisciplinary electronic databases, including MEDLINE, PsycINFO, CINAHL, and ERIC, were searched from 1950 to December 17, 2012. Abstracts and full-text papers were screened for inclusion, in duplicate, based on established criteria. Recurrent themes and key concepts were identified and analyzed. One-thousand and twenty-two abstracts were retrieved, and fifty-one proceeded to full-text review. Ten studies reporting on eight populations were included in this review. Key themes that emerged from the literature include: experience with the testing process; influence testing has on treatment; and comprehension of results. The literature suggests that testing for breast cancer recurrence can have a negative impact on women; poor comprehension of test results, and anxiety/distress were the most frequently cited reasons for a negative experience. Despite these drawbacks, women consistently reported that they would recommend testing to others. The literature on this topic is limited, and heterogeneous. The available literature suggests that women are generally satisfied with risk of recurrence testing for breast cancer. Potential drawbacks of risk of recurrence testing include anxiety and comprehension of test results. Additional high-quality research on women's experiences with risk of recurrence testing for breast cancer would improve the evidence base, and would allow stronger conclusions to be drawn.


Assuntos
Atitude Frente a Saúde , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Recidiva Local de Neoplasia , Neoplasias da Mama/terapia , Tomada de Decisões , Feminino , Humanos , Inquéritos e Questionários
7.
Patient ; 17(4): 379-395, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38488995

RESUMO

BACKGROUND: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. METHODS: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. RESULTS: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. CONCLUSION: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.


Assuntos
Doenças Inflamatórias Intestinais , Participação do Paciente , Pesquisa Qualitativa , Projetos de Pesquisa , Humanos , Participação do Paciente/métodos , Doenças Inflamatórias Intestinais/terapia , Feminino , Masculino , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Preferência do Paciente
8.
J Can Assoc Gastroenterol ; 7(2): 177-187, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38596802

RESUMO

Background: Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods: We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results: PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion: The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

9.
BMC Med Res Methodol ; 13: 135, 2013 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-24209392

RESUMO

BACKGROUND: Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature. METHODS: To inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers. RESULTS: (1) LITERATURE REVIEW: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others. CONCLUSIONS: We report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.


Assuntos
Doenças do Sistema Nervoso/terapia , Sistema de Registros , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Humanos , Doenças do Sistema Nervoso/epidemiologia , Participação do Paciente
10.
Int J Technol Assess Health Care ; 29(4): 418-23, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24290335

RESUMO

BACKGROUND: Health technology reassessment (HTR) is "a structured, evidence-based assessment of the clinical, social, ethical, and economic effects of a technology currently used in the healthcare system, to inform optimal use of that technology in comparison to its alternatives." The purpose of this study is to describe the key themes in the context of current HTR activities and propose a way forward for this newly emerging field. METHODS: Data were gathered from a workshop held as part of the 2012 Canadian Agency for Drugs and Technology in Health (CADTH) symposium. The workshop consisted of two panel presentations followed by discussion; data gathered, including presentations and rich audience discussion transcripts, were analyzed for key themes emerging in the field of HTR using constant comparative analysis. RESULTS: The language chosen to describe HTR will set the tone for engagement. The identification of champions at multiple levels and political will are essential. Key lessons from international experience are: disinvestment is difficult, focus on clinical areas not specific technologies, identify clear goals of the HTR agenda. Six key themes were identified to move the HTR agenda forward: emphasize integration over segregation, focus on development of HTR methods and processes, processes are context-specific but lessons must be shared, build capacity in synergistic interdisciplinary fields, develop meaningful stakeholder engagement, strengthen postimplementation monitoring and evaluation. CONCLUSIONS: To move this field forward, we must continue to build on international experiences with a focus on developing novel methodological approaches to generating, incorporating, and implementing evidence into policy and practice.


Assuntos
Avaliação da Tecnologia Biomédica , Tomada de Decisões Gerenciais , Internacionalidade , Avaliação da Tecnologia Biomédica/métodos
11.
Musculoskeletal Care ; 21(4): 1248-1260, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37596866

RESUMO

INTRODUCTION: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and causes short- and long-term disability. Optimal management requires pharmacologic and non-pharmacologic interventions. Few studies have explored the youth and family experience of the management of JIA. This study's objective was to explore the management experience of youth with JIA and their parents. METHODS: This qualitative study used semi-structured interviews with youth 12-18 years of age with JIA receiving biological medication and parents of children with JIA on biological medication. Participants were recruited in clinics using convenience sampling. A thematic analysis approach was employed for data analysis. RESULTS: Nine youth and 14 parents participated. Four themes were identified that encompassed an overarching theme of participants managing JIA within the context of their life: aspects of life affected by JIA and its management, lived experience with JIA management, medication decision-making, and involvement in decision-making. Juvenile idiopathic arthritis management is situated within the context of their life but is normally (outside acute events) not central. CONCLUSION: Two dimensions were added to those in the literature: parents' overall approaches to health and the sense of urgency surrounding decision-making. Our findings reinforce the importance of person- and family-centred care in paediatric rheumatology. That is, identifying what matters most to youth and their parents given their current life circumstances to provide a foundation for discussions of how they want to manage their JIA.


Assuntos
Artrite Juvenil , Doenças Reumáticas , Criança , Humanos , Adolescente , Artrite Juvenil/terapia , Pesquisa Qualitativa , Projetos de Pesquisa , Pais , Qualidade de Vida
12.
BMJ Open ; 13(11): e073953, 2023 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-37989365

RESUMO

OBJECTIVE: The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. DESIGN: We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. SETTING: The study was conducted online. PARTICIPANTS: Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. MAIN OUTCOME MEASURES: Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. RESULTS: Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. CONCLUSIONS: Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.


Assuntos
Produtos Biológicos , Doenças Inflamatórias Intestinais , Humanos , Correio Eletrônico , Doenças Inflamatórias Intestinais/terapia , Participação do Paciente , Pesquisa Qualitativa
13.
Health Res Policy Syst ; 10: 38, 2012 Dec 14.
Artigo em Inglês | MEDLINE | ID: mdl-23241276

RESUMO

BACKGROUND: Health Technology Reassessment (HTR) is a structured, evidence-based assessment of the clinical, social, ethical and economic effects of a technology currently used in the health care system, to inform optimal use of that technology in comparison to its alternatives. Little is known about current international HTR practices. The objective of this research was to summarize experience-based information gathered from international experts on the development, initiation and implementation of a HTR program. METHODS: A mixed methods approach, using a survey and in-depth interviews, was adopted. The survey covered 8 concepts: prioritization/identification of potentially obsolete technologies; program development; implementation; mitigation; program championing; stakeholder engagement; monitoring; and reinvestment. Members of Health Technology Assessment International (HTAi) and the International Network of Agencies for Health Technology Assessment (INAHTA) formed the sampling frame. Participation was solicited via email and the survey was administered online using SurveyMonkey. Survey results were analyzed using descriptive statistics. To gather more in-depth knowledge, semi-structured interviews were conducted among organizations with active HTR programs. Interview questions were developed using the same 8 concepts. The hour-long interviews were recorded, transcribed and analyzed using constant comparative analysis. RESULTS: Ninety-five individuals responded to the survey: 49 were not discussing HTR, 21 were beginning to discuss HTR, nine were imminently developing a program, and 16 participants had programs and were completing reassessments. The survey results revealed that methods vary widely and that although HTR is a powerful tool, it is currently not being used to its full potential. Of the 16 with active programs, nine agreed to participate in follow-up interviews. Interview participants identified early and extensive stakeholder engagement as the most important factors for success. A lack of top-down support and financial and human resources are inhibiting program development. DISCUSSION: HTR is in its infancy. Although HTRs are being conducted, there are no standardized approaches. However, much can be learned from current international work. Future work should focus on developing a comprehensive methodology, reporting the processes of reassessments and sharing successes and challenges in a common platform.


Assuntos
Tecnologia Biomédica/normas , Avaliação da Tecnologia Biomédica , Coleta de Dados , Humanos , Internacionalidade , Entrevistas como Assunto , Desenvolvimento de Programas/economia
14.
Healthc Q ; 15 Spec No 4: 64-75, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-24955516

RESUMO

Family-centred care (FCC) is a key factor in increasing health and related system responsiveness to the needs of children and families; unfortunately, it is an unfamiliar service model in children's mental health. This critical review of the literature addresses three key questions: What are the concepts, characteristics and principles of FCC in the context of delivering mental health services to children? What are the enablers, barriers and demonstrated benefits to using a family-centred approach to care in children's mental health? And how can we facilitate moving an FCC model forward in children's mental health? A range of databases was searched for the years 2000­2011, for children ages zero to 18 years. Articles were selected for inclusion if a family-centred approach to care was articulated and the context was the intervention and treatment side of the mental healthcare system. This literature review uncovered a multiplicity of terms and concepts, all closely related to FCC. Two of the most frequently used terms in children's mental health are family centred and family focused, which have important differences, particularly in regard to how the family is viewed. Initial benefits to FCC include improved child and family management skills and function, an increased stability of living situation, improved cost-effectiveness, increased consumer and family satisfaction and improved child and family health and well-being. Significant challenges exist in evaluating FCC because of varying interpretations of its core concepts and applications. Nonetheless, a shared understanding of FCC in a children's mental health context seems possible, and examples can be found of best practices, enablers and strategies, including opportunities for innovative policy change to overcome barriers.


Assuntos
Assistência Integral à Saúde/tendências , Saúde da Família , Transtornos Mentais/terapia , Assistência Centrada no Paciente/tendências , Adolescente , Criança , Feminino , Humanos , Masculino
15.
J Spinal Cord Med ; 45(6): 848-856, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-34855574

RESUMO

CONTEXT/OBJECTIVE: Spinal cord injury (SCI) is intensely life altering, affecting multiple body systems and functions, including the ability to walk. Exoskeleton assisted walking (EAW) is a rehabilitation tool that aims to support locomotor training, yet little is known about the patient experience. The purpose of this qualitative study, part of a prospective observational case series, was to increase our understanding of SCI patient experience using a robotic exoskeleton in this acute post-injury period. DESIGN: A qualitative descriptive approach was implemented in this study, with the aim to explore and understand participants' experience with EAW training. PARTICIPANTS/SETTING: Nine of the 11 participants enrolled in the observational study agreed to participate in an interview. All participants had suffered a SCI, and had received their trauma care and inpatient rehabilitation at a tertiary center in Calgary, Alberta, Canada. RESULTS: The benefits to EAW use described by participants were primarily psychological and included the joy of eye level contact, excitement at being able to walk with assistance, improvement in mood, and hope for the future. Potential physiological benefits include increased strength, decreased spasticity and reduced pain. Challenges to EAW use include weakness and fatigue, and a fear of incontinence. CONCLUSION: Qualitative research will continue to be an important component in future research on the use of EAW training as part of the rehabilitation process. Increasing understanding of the participants experience with this novel therapeutic modality and technology will be fundamental to improve its implementation in clinical practice.


Assuntos
Exoesqueleto Energizado , Traumatismos da Medula Espinal , Humanos , Traumatismos da Medula Espinal/reabilitação , Caminhada/fisiologia , Modalidades de Fisioterapia , Pesquisa Qualitativa
16.
BMJ Open ; 12(5): e059604, 2022 05 26.
Artigo em Inglês | MEDLINE | ID: mdl-35618329

RESUMO

INTRODUCTION: When delivered in person, yoga has been shown to be effective in managing irritable bowel syndrome (IBS) symptoms. Research is needed to test the feasibility and effectiveness of yoga as a therapeutic option when delivered virtually. The primary aim of the mind and yoga for IBS randomised controlled trial is to determine the effects of an 8-week virtual meditation and yoga intervention on IBS symptom severity compared with an advice-only active control group. METHODS AND ANALYSIS: Adults diagnosed with IBS will be randomised to receive either a Upa Yoga intervention or an advice-only control group. The intervention will consist of weekly online classes for 8 weeks delivered by a facilitator using Microsoft Office Teams and daily home practice. Feasibility will be evaluated by examining recruitment and attrition rates, adherence, participant satisfaction with the programme and safety. The primary outcome is IBS symptom severity, and key secondary outcomes include (but not limited to) quality of life, anxiety and depression symptoms, COVID-19-related stress and anxiety, and fatigue. Outcomes will be assessed at baseline, 4 weeks and 8 weeks. An embedded design experimental model substudy will be conducted post intervention using qualitative research methods to identify participants' experiences in the yoga programme. ETHICS AND DISSEMINATION: This study has been approved by the Conjoint Health Research Ethics Board (REB ID 20-0084). Findings will be disseminated through peer-reviewed publication, conference presentation and social media. TRIAL REGISTRATION NUMBER: NCT04302623.


Assuntos
COVID-19 , Síndrome do Intestino Irritável , Meditação , Yoga , Adulto , Humanos , Síndrome do Intestino Irritável/tratamento farmacológico , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento
17.
Musculoskeletal Care ; 20(3): 605-615, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35166015

RESUMO

BACKGROUND: Osteoarthritis management aims to reduce pain and improve function. Many factors affect whether patients follow recommended strategies. Locus of control refers to individual beliefs around who and what influences health. Locus of control is related to the treatment strategies patients prefer. Currently, no studies explore locus of control in non-surgical management of osteoarthritis. OBJECTIVES: To explore patients' beliefs about the influences on their osteoarthritis symptoms and disease progression. METHODS: Semi-structured interviews were conducted with individuals experiencing self-reported hip and/or knee osteoarthritis who had at least one joint that had not undergone replacement surgery. We used a qualitative description approach and the Braun and Clarke method for thematic analysis. Participants' locus of control classifications-internal, chance, doctors, or other people-were based on the Multidimensional Health Locus of Control (MHLC) Scales Form C score. RESULTS: Locus of control was discussed in relation to aetiology, progression, and symptoms. Participants' opinions varied on whether their osteoarthritis progression could be influenced. 46% of participants attributed control to other people. Most participants believed that a previous injury had caused their osteoarthritis and that both themselves and others had some influence over their osteoarthritis symptoms, regardless of their locus of control classification. CONCLUSION: This research highlights the need for education about: the aetiology of osteoarthritis, the link between management and progression, and patient management of osteoarthritis. Further research is required to discern why expected patterns were not observed between participants' beliefs and locus of control classifications.


Assuntos
Osteoartrite do Quadril , Osteoartrite do Joelho , Humanos , Osteoartrite do Quadril/cirurgia , Osteoartrite do Joelho/terapia
18.
Patient ; 15(5): 537-550, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35292937

RESUMO

BACKGROUND: Approximately half of patients with hip and knee osteoarthritis have tried non-surgical management before surgical consultation. Understanding the many factors affecting the uptake of recommended strategies is important to inform future development of such management strategies. OBJECTIVES: The aim of this study was to explore and identify factors that patients with osteoarthritis consider when choosing non-surgical management for hip and knee osteoarthritis, as formative research for a study of patient preferences for non-surgical management programs for osteoarthritis. METHODS: A qualitative research design was used. Participants were recruited using a combination of stratified and convenience sampling. Interviews were conducted, using a semi-structured interview guide, with English-speaking patients who had self-reported hip and/or knee osteoarthritis and at least one joint that had not undergone replacement surgery. Data were thematically analyzed. RESULTS: Thirteen patients participated in these interviews. Sixteen factors that participants considered when choosing non-surgical osteoarthritis management were identified. Eleven were extrinsic, relating to features of programs and services, and are categorized as types of interventions, general program and service details, and program-specific details. Five were intrinsic to the individual and influenced how decisions for osteoarthritis management were approached and the options available to choose from. Three novel factors included participants' desire for further management, their views about joint replacement surgery, and whether they felt personal choice was available in osteoarthritis management strategies. CONCLUSION: Key factors were identified that patients considered when making decisions about non-surgical management for their osteoarthritis that will be used to inform a discrete choice experiment (DCE) that aims to measure preferences for these factors.


Assuntos
Osteoartrite do Quadril , Osteoartrite do Joelho , Tomada de Decisões , Humanos , Osteoartrite do Quadril/cirurgia , Osteoartrite do Joelho/cirurgia , Preferência do Paciente , Pesquisa Qualitativa
19.
J Can Assoc Gastroenterol ; 5(6): 261-270, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36467596

RESUMO

Background: Inflammatory bowel disease (IBD) can lead to substantial impairments of quality-of-life. Clinical guidelines and quality indicators aid physicians in practice but may not reflect the perspectives and experiences of patients with IBD. To address this, the objectives of this study were to understand patient experiences with IBD care and to explore priorities. Methods: Based on a convenience sample of 36 participants, five focus groups were completed at four sites across Canada. Data were analyzed using a deductive thematic analysis approach to assess emergent themes and variability in participants' experiences. Results: Our results are organized by themes of structure, process and outcomes to illustrate common issues with respect to how care is organized in the healthcare system, how patients receive and experience care and how patients perceive the outcomes of their care. Our results frame a health systems quality approach that signal needed improvements in access to care, the need for innovation with respect to virtual medicine, the potential expansion of multidisciplinary team-based care and the importance of addressing the psychosocial dimensions for patients with IBD and their caregivers in order to better deliver patient-centred care. Conclusions: The issues identified have the potential to impact priority areas in the system, IBD care delivery, and how outcomes can be improved by focusing on 'lived experience' and patient-centred care. The differing values and perspectives of all those involved in caring for patients with IBD underscore the importance of good communication with patients, caregivers and family members, as well as staying responsive to evolving needs.

20.
PLoS One ; 16(2): e0246941, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33606782

RESUMO

Public health measures to reduce COVID-19 transmission include masking in public places, physical distancing, staying home when ill, avoiding high-risk locations, using a contact tracing app, and being willing to take a COVID-19 vaccine. However, adoption of these measures varies greatly. We aimed to improve health messaging to increase adherence to public health behaviours to reduce COVID-19 transmission by: 1) determining attitudes towards public health measures and current behaviours; 2) identifying barriers to following public health measures; and, 3) identifying public health communication strategies. We recruited participants from a random panel of 3000 phone numbers across Alberta to fill a predetermined quota: age (18-29; 30-59; 60+ years), geographic location (urban; rural), and whether they had school-age children. Two researchers coded and themed all transcripts. We performed content analysis and in-depth thematic analysis. Nine focus groups were conducted with 2-8 participants/group in August-September, 2020. Several themes were identified: 1) importance of public health measures; 2) compliance with public health measures; 3) critiques of public health messaging; and 4) suggestions for improving public health messaging. Physical distancing and masking were seen as more important than using a contact tracing app. There were mixed views around willingness to take COVID-19 vaccine. Current public health messaging was perceived as conflicting. Participants felt that consistent messaging and using social media to reach younger people would be helpful. In conclusion, these findings provide insights that can be used to inform targeted (e.g., by age, current behaviour) public health communications to encourage behaviors that reduce COVID-19 transmission.


Assuntos
COVID-19 , Busca de Comunicante , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , SARS-CoV-2 , Mídias Sociais , Adolescente , Adulto , Idoso , Alberta/epidemiologia , COVID-19/epidemiologia , COVID-19/prevenção & controle , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
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