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Importance: Black and Hispanic patients have high rates of recurrent stroke and uncontrolled hypertension in the US. The effectiveness of home blood pressure telemonitoring (HBPTM) and telephonic nurse case management (NCM) among low-income Black and Hispanic patients with stroke is unknown. Objective: To determine whether NCM plus HBPTM results in greater systolic blood pressure (SBP) reduction at 12 months and lower rate of stroke recurrence at 24 months than HBPTM alone among Black and Hispanic stroke survivors with uncontrolled hypertension. Design, Setting, and Participants: Practice-based, multicenter, randomized clinical trial in 8 stroke centers and ambulatory practices in New York City. Black and Hispanic study participants were enrolled between April 18, 2014, and December 19, 2017, with a final follow-up visit on December 31, 2019. Interventions: Participants were randomly assigned to receive either HBPTM alone (12 home BP measurements/week for 12 months, with results transmitted to a clinician; n = 226) or NCM plus HBPTM (20 counseling calls over 12 months; n = 224). Main Outcomes and Measures: Primary outcomes were change in SBP at 12 months and rate of recurrent stroke at 24 months. Final statistical analyses were completed March 14, 2024. Results: Among 450 participants who were enrolled and randomized (mean [SD] age, 61.7 [11.0] years; 51% were Black [n = 231]; 44% were women [n = 200]; 31% had ≥3 comorbid conditions [n = 137]; 72% had household income <$25â¯000/y [n = 234/324]), 358 (80%) completed the trial. Those in the NCM plus HBPTM group had a significantly greater SBP reduction than those in the HBPTM alone group at 12 months (-15.1 mm Hg [95% CI, -17.2 to -13.0] vs -5.8 mm Hg [95% CI, -7.9 to -3.7], respectively; P < .001). The between-group difference in SBP reduction at 12 months, adjusted for primary care physician clustering, was -8.1 mm Hg (95% CI, -11.2 to -5.0; P < .001) at 12 months. The rate of recurrent stroke was similar between both groups at 24 months (4.0% in the NCM plus HBPTM group vs 4.0% in the HBPTM alone group, P > .99). Conclusions and Relevance: Among predominantly low-income Black and Hispanic stroke survivors with uncontrolled hypertension, addition of NCM to HBPTM led to greater SBP reduction than HBPTM alone. Additional studies are needed to understand the long-term clinical outcomes, cost-effectiveness, and generalizability of NCM-enhanced telehealth programs among low-income Black and Hispanic stroke survivors with significant comorbidity. Trial Registration: Clinical Trials.gov Identifier: NCT02011685.
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Negro ou Afro-Americano , Monitorização Ambulatorial da Pressão Arterial , Administração de Caso , Hispânico ou Latino , Hipertensão , Acidente Vascular Cerebral , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pressão Sanguínea , Hipertensão/etnologia , Hipertensão/enfermagem , Recidiva , Acidente Vascular Cerebral/etnologia , Acidente Vascular Cerebral/enfermagem , Telemedicina , Cidade de Nova Iorque , PobrezaRESUMO
The COVID-19 pandemic appears to have shifted the care trajectories of many residents and care partners in Ontario who considered leaving LTC to live in the community for a portion or the duration of the pandemic. This type of care transition-from LTC to home care-was highly uncommon prior to the pandemic, therefore we know relatively little about the planning and decision-making involved. The aim of this study was to describe who was involved in LTC to home care transitions in Ontario during the COVID-19 pandemic, to what extent, and the factors that guided their decision-making. A qualitative description study involving semi-structured interviews with 32 residents, care partners and health professionals was conducted. Transition decisions were largely made by care partners, with varied input from residents or health professionals. Stakeholders considered seven factors, previously identified in a scoping review, when making their transition decisions: (a) institutional priorities and requirements; (b) resources; (c) knowledge; (d) risk; (e) group structure and dynamic; (f) health and support needs; and (g) personality preferences and beliefs. Participants' emotional responses to the pandemic also influenced the perceived need to pursue a care transition. The findings of this research provide insights towards the planning required to support LTC to home care transitions, and the many challenges that arise during decision-making.
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COVID-19 , Pandemias , Humanos , Cuidadores , COVID-19/epidemiologia , Assistência de Longa Duração , Casas de Saúde , Ontário/epidemiologia , Transferência de PacientesRESUMO
To increase retention of nurses and ease the nursing shortage, innovative mentorship strategies must be implemented. Our rapid review shows that mentorship programs in hospitals for early-, mid- and late-career nurses is an effective way to improve nurse retention. The unique needs of internationally educated nurses must also be considered in these programs to bolster the Canadian nursing workforce supply. We highlight five tools that are critical to the successful implementation of nurse mentorship programs in hospitals: (1) establish reciprocal relationships between mentors, mentees, hospital administrators and leaders ; (2) facilitate administrative structures, resources and support for mentors and mentees ; (3) enable effective features of mentorship programs ; (4) ensure that mentorship promotes professional and personal development ; and (5) support internationally educated nurses through mentorship.
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Mentores , Recursos Humanos de Enfermagem , Humanos , Canadá , HospitaisRESUMO
BACKGROUND: The COVID-19 pandemic has contributed to a global crisis in long-term care (LTC) with devastating consequences for residents, families and health professionals. In Ontario, Canada the severity of this crisis has prompted some care partners to move residents home with them for the duration or a portion of the pandemic. This type of care transition, from LTC to home care, was highly unusual pre-pandemic and arguably suboptimal for adults with complex needs. This paper presents the findings of a qualitative study to better understand how residents, care partners, and health professionals made care transition decisions in Ontario's LTC settings during the pandemic. METHODS: Semi-structured interviews were conducted with 32 residents, care partners and health professionals who considered, supported or pursued a care transition in a LTC setting in Ontario during the pandemic. Crisis Decision Theory was used to structure the analysis. RESULTS: The results highlighted significant individual and group differences in how participants assessed the severity of the crisis and evaluated response options. Key factors that had an impact on decision trajectories included the individuals' emotional responses to the pandemic, personal identities and available resources. CONCLUSIONS: The findings from this study offer novel important insights regarding how individuals and groups perceive and respond to crisis events.
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COVID-19 , Assistência de Longa Duração , Transferência de Pacientes , Humanos , Masculino , COVID-19/epidemiologia , Ontário/epidemiologia , Pandemias , Pesquisa QualitativaRESUMO
BACKGROUND: The COVID-19 pandemic caused disruptions across healthcare systems globally exposing the precarious state of patient engagement across all levels of healthcare. While evidence is emerging to describe how engagement was affected across various settings, insights about how some organizations at the policy and practice level of healthcare were able to sustain or adapt patient engagement activities is lacking. OBJECTIVE: This paper addresses the following research question: "How were healthcare, government, and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?" METHODS: A qualitative descriptive study was conducted to understand how patient engagement activities were maintained or adapted in a variety of healthcare, government, and patient partner organizations in Canada throughout the pandemic. This analysis was part of a larger qualitative, multiple case study where one-to-one interviews were conducted with organizational leaders, managers and patient partners. RESULTS: The following themes were identified as key aspects of maintaining or adapting patient engagement activities: 1) having an embedded organizational culture of patient engagement; 2) adapting patient engagement activities to focus on COVID-19 response efforts; 3) having patient partners who exercised leadership and advocacy to support patient care and experiences during the pandemic; and 4) leveraging virtual technology as a communication tool to engage patient partners. CONCLUSION: This paper highlights important insights that may be useful to other health care organizations on how to sustain or adapt patient engagement activities during a healthcare crisis. Having patient engagement embedded within an organization's culture supported by, but not limited to, infrastructure, resources, investments in dedicated staff and patient partner leadership, and communication strategies and tools enabled continued patient engagement activities during the pandemic.
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COVID-19 , Participação do Paciente , Humanos , COVID-19/epidemiologia , Pandemias , Canadá/epidemiologia , Pesquisa QualitativaRESUMO
Mesenchymal stem cells (MSCs) derived from bone marrow can support skeletal tissue repair and regeneration owing to their self-renewing capacity, differentiation ability, and trophic functions. Bone marrow-derived MSCs undergo dramatic changes with aging, including the senescence-associated secretory phenotype (SASP) which may largely contribute to age-related changes in bone tissue leading to osteoporosis. A mass spectrometry-based proteomics approach was used to investigate the MSC SASP. Replicative senescence was achieved by exhaustive in vitro sub-cultivation and confirmed by standard proliferation criteria. Conditioned media from non-senescent and senescent MSCs underwent mass spectrometry. Proteomics and bioinformatics analyses enabled the identification of 95 proteins expressed uniquely in senescent MSCs. Protein ontology analysis revealed the enrichment of proteins linked to the extracellular matrix, exosomes, cell adhesion, and calcium ion binding. The proteomic analysis was independently validated by taking ten identified proteins with relevance to bone aging and confirming their increased abundance in conditioned media from replicatively senescent versus non-senescent MSCs (ACTα2, LTF, SOD1, IL-6, LTBP2, PXDN, SERPINE 1, COL1α1, THBS1, OPG). These target proteins were used to further investigate changes in the MSC SASP profile in response to other inducers of senescence, ionizing radiation (IR) and H2O2. Similar secreted protein expression profiles with replicatively senescent cells were seen with H2O2 treatment except for LTF and PXDN, which were increased by IR treatment. With both IR and H2O2 treatment there was a decrease in THBS1. In vivo investigation of these secreted proteins with aging was shown by significant changes in the abundance of OPG, COL1α1, IL-6, ACTα2, SERPINE 1, and THBS1 in the plasma of aged rats. This unbiased, comprehensive analysis of the changes in the MSC secretome with senescence defines the unique protein signature of the SASP in these cells and provides a better understanding of the aging bone microenvironment.
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BACKGROUND: In Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines 'patient-oriented research' as a continuum of research that engages patients as partners, focuses on patient priorities, and leads to improved patient outcomes. The overarching term 'patient' is inclusive of individuals with personal experience of a health issue as well as informal caregivers including family and friends. The vision for the strategy is improved patient experiences and outcomes through the integration of patient-oriented research findings into practice, policy, and health system improvement. Building capacity in patient-oriented research among all relevant stakeholders, namely patients, practitioners, organizational leaders, policymakers, researchers, and research funders is a core element of the strategy. MAIN BODY: The objective of this paper is to describe capacity building initiatives in patient-oriented research led by the Ontario SPOR SUPPORT Unit in Ontario, Canada over the period 2014-2020. CONCLUSION: The Ontario SPOR SUPPORT Unit Working Group in Training and Capacity Development has led numerous capacity building initiatives: developed a Capacity Building Compendium (accessed greater than 45,000 times); hosted Masterclasses that have trained hundreds of stakeholders (patients, practitioners, organizational leaders, policymakers, researchers, and trainees) in the conduct and use of patient-oriented research; funded the development of online curricula on patient-oriented research that have reached thousands of stakeholders; developed a patient engagement resource center that has been accessed by tens of thousands of stakeholders; identified core competencies for research teams and research environments to ensure authentic and meaningful patient partnerships in health research; and shared these resources and learnings with stakeholders across Canada, North America, and internationally.
In 2011, Canada developed a Strategy for Patient-Oriented Research. The aim of the strategy was to ensure that patients were included as equal partners in research, with the goal to improve the patient experience and enhance health outcomes using research findings to influence clinical care, policy, and health system improvement. Building capacity in patient-oriented research is a core element of the strategy. Since 2014, the Ontario SPOR SUPPORT Unit has led numerous initiatives to build capacity in patient-oriented research. Successes include a Capacity Building Compendium (a catalogue of resources that has been accessed greater than 45,000 times); courses on how to do and how to use patient-oriented research that have trained hundreds of patients, practitioners, organizational leaders, policymakers, and researchers; created online patient-oriented research materials; developed a patient engagement resource center; identified what is required to ensure authentic and meaningful patient partnerships in research; and shared these resources and learnings widely.
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This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first â¼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. "Vanguard patients" collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced "rejected" candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was "validated" had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of "co-experting" through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.
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Health-care systems around the world are striving to be patient-centered, and there is growing evidence that engaging patients and families in their care, as well as in efforts to redesign services, contributes to improved outcomes and experiences for patients and providers. This patient-oriented care movement includes efforts to improve the quality of information and communication between health-care professionals and patients as well as families and caregivers. Whiteboards have emerged as a best practice in hospitals to promote engagement and improve information and communication, yet with limited empirical evidence regarding their value to patients, families, or interprofessional teams. We introduced whiteboards on an acute medical unit at a community hospital and conducted an evaluation using a pre-post design collecting both qualitative and quantitative data. Baseline and post-implementation data were collected via qualitative interviews with patients/family and providers and using the Canadian Patient Experience Survey; focus groups were held with staff and members of the care team. Qualitative results highlighted improvements in communication between the care team and patients as well as family members. Implications for practice include attention to patient/family empowerment and safety, adherence to guidance for good communication, and support for regular training and education in the use of communication tools for members of the interprofessional team.
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Família , Relações Interprofissionais , Humanos , Canadá , Pacientes , Cuidadores , Equipe de Assistência ao Paciente , ComunicaçãoRESUMO
Older people and health care workers in residential care homes are particularly vulnerable to the adverse impacts of the COVID-19 pandemic. As COVID-19 has been spreading around the world for more than two years, the nature of care delivery has been substantially transformed. This study aims at understanding the long-term and ongoing impacts of COVID-19 on the delivery of care in residential care homes. It investigates how the delivery of care has been transformed by the COVID-19 pandemic and how health care workers adapted to these changes from the perspectives of frontline health care workers. Semi-structured interviews were conducted from February to December 2021 with a purposive sample of 30 health care workers from six residential care homes in Hong Kong. Thematic analysis identified three themes, including (1) enhancing infection prevention and control measures; (2) maintaining the psychosocial wellbeing of residents; and (3) developing resilience. Discussions and implications were drawn from these findings.
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COVID-19 , Instituição de Longa Permanência para Idosos , Humanos , Idoso , Casas de Saúde , COVID-19/epidemiologia , Pandemias , Pessoal de SaúdeRESUMO
RATIONALE, AIMS, AND OBJECTIVES: Chronic pain is a global public health problem that negatively impacts individuals' quality of life and imposes a substantial economic burden on societies. The use of medicinal cannabis (MC) is often considered by patients to help manage chronic pain as an alternative or supplement to more conventional treatments, given enabling legalization in a number of countries. However, healthcare professionals involved in providing guidance for patients related to MC are often doing so in the absence of strong evidence and clinical guidelines. Therefore, it is crucial to understand their perspectives regarding the clinical use and relevance of MC for chronic pain. As little is known about attitudes of HCPs with regard to MC use for chronic pain specifically, the aim of this review was to identify and synthesize the published evidence on this topic. METHODS: A systematic search was conducted across six databases: MEDLINE, EMBASE, CINAHL, Scopus, Web of Science, and PubMed from 2001 to March 26, 2021. Three authors independently performed the study selection and data extraction. Thematic analysis was undertaken to identify key themes. RESULTS: A total of 26 studies were included, involving the United States, Israel, Canada, Australia, Ireland, and Norway, and the perspectives of physicians, nurses, and pharmacists. Seven key themes were identified: MC as a treatment option for chronic pain, and perceived indicated uses; willingness to prescribe MC; legal issues; low perceived knowledge and the need for education; comparative safety of MC versus opioids; addiction and abuse; and perceived adverse effects; CONCLUSION: To support best practice in the use of MC for chronic pain, healthcare professionals require education and training, as well as clinical guidelines that provide evidence-based information about efficacy, safety, and appropriate dosage of products for this indication. Until these gaps are addressed, healthcare professionals will be limited in their capacity to make treatment recommendations about MC for people/patients with chronic pain.
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Dor Crônica , Maconha Medicinal , Humanos , Dor Crônica/tratamento farmacológico , Maconha Medicinal/uso terapêutico , Qualidade de Vida , Pessoal de Saúde , Atenção à SaúdeRESUMO
Optimising the discharge process for internal medicine programs is a challenge given multiple social and practical constraints in transitions from hospital to home. The objective of this study is to explore healthcare professionals' perspectives on discharge processes in internal medicine within a context of organisational reform. This is an interpretive descriptive qualitative study using in-depth individual interviews with healthcare providers. Seventeen semi-structured interviews were conducted. The study comprised a sample of 18 healthcare professionals working on two internal medicine wards in an acute care teaching hospital in Quebec. A conceptual framework comprising core aspects of the discharge process (planning, coordination, teaching and outcomes) guided data collection and analysis. Thematic analysis was applied to analyse the data. Major themes were developed by contrasting empirical data and the conceptual framework. Five themes were developed (1) Iterative discharge planning; (2) Patient and family engagement in discharge planning and discharge readiness, (3) Lack of time for discharge teaching, (4) Discharge coordination and the placement of patients and (5) Inequitable social support and resources and risk of readmission. This study highlights the inter-relationship between discharge readiness and phases of the discharge process, in particular planning and coordination. Iterative planning along with strategies to coordinate discharge constitute efforts to ensure flexible processes that respond to patients' needs and preferences. Challenges persist for healthcare professionals regarding autonomy and resources, along with reduced opportunities for patient and family engagement in decision-making.
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Pessoal de Saúde , Alta do Paciente , Humanos , Quebeque , Pesquisa Qualitativa , Medicina Interna , Atenção à SaúdeRESUMO
OBJECTIVE: To synthesise the existing literature on care transition planning from the perspectives of older adults, caregivers and health professionals and to identify the factors that may influence these stakeholders' transition decision-making processes. DESIGN: A scoping review guided by Arksey and O'Malley's six-step framework. A comprehensive search strategy was conducted on 7 January 2021 to identify articles in five databases (MEDLINE, Embase, CINAHL Plus, PsycINFO and AgeLine). Records were included when they described care transition planning in an institutional setting from the perspectives of the care triad (older adults, caregivers and health professionals). No date or study design restrictions were imposed. SETTING: This review explored care transitions involving older adults from an institutional care setting to any other institutional or non-institutional care setting. Institutional care settings include communal facilities where individuals dwell for short or extended periods of time and have access to healthcare services. PARTICIPANTS: Older adults (aged 65 or older), caregivers and health professionals. RESULTS: 39 records were included. Stakeholder involvement in transition planning varied across the studies. Transition decisions were largely made by health professionals, with limited or unclear involvement from older adults and caregivers. Seven factors appeared to guide transition planning across the stakeholder groups: (a) institutional priorities and requirements; (b) resources; (c) knowledge; (d) risk; (e) group structure and dynamic; (f) health and support needs; and (g) personality preferences and beliefs. Factors were described at microlevels, mesolevels and macrolevels. CONCLUSIONS: This review explored stakeholder involvement in transition planning and identified seven factors that appear to influence transition decision-making. These factors may be useful in advancing the delivery of person and family-centred care by determining how individual-level, group-level and system-level values guide decision-making. Further research is needed to understand how various stakeholder groups balance these factors during transition planning in different health contexts.
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Cuidadores , Transferência de Pacientes , Idoso , Pessoal de Saúde , Humanos , Projetos de PesquisaRESUMO
BACKGROUND: Older adults experience a high risk of adverse events during hospital-to-home transitions. Implementation barriers have prevented widespread clinical uptake of the various digital health technologies that aim to support hospital-to-home transitions. OBJECTIVE: To guide the development of a digital health intervention to support transitions from hospital to home (the Digital Bridge intervention), the specific objectives of this review were to describe the various roles and functions of health care providers supporting hospital-to-home transitions for older adults, allowing future technologies to be more targeted to support their work; describe the types of digital health interventions used to facilitate the transition from hospital to home for older adults and elucidate how these interventions support the roles and functions of providers; describe the lessons learned from the design and implementation of these interventions; and identify opportunities to improve the fit between technology and provider functions within the Digital Bridge intervention and other transition-focused digital health interventions. METHODS: This 2-phase rapid review involved a selective review of providers' roles and their functions during hospital-to-home transitions (phase 1) and a structured literature review on digital health interventions used to support older adults' hospital-to-home transitions (phase 2). During the analysis, the technology functions identified in phase 2 were linked to the provider roles and functions identified in phase 1. RESULTS: In phase 1, various provider roles were identified that facilitated hospital-to-home transitions, including navigation-specific roles and the roles of nurses and physicians. The key transition functions performed by providers were related to the 3 categories of continuity of care (ie, informational, management, and relational continuity). Phase 2, included articles (n=142) that reported digital health interventions targeting various medical conditions or groups. Most digital health interventions supported management continuity (eg, follow-up, assessment, and monitoring of patients' status after hospital discharge), whereas informational and relational continuity were the least supported. The lessons learned from the interventions were categorized into technology- and research-related challenges and opportunities and informed several recommendations to guide the design of transition-focused digital health interventions. CONCLUSIONS: This review highlights the need for Digital Bridge and other digital health interventions to align the design and delivery of digital health interventions with provider functions, design and test interventions with older adults, and examine multilevel outcomes. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-045596.
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INTRODUCTION: Interest in multisectoral policies has increased, particularly in the context of low-income and middle-income countries and efforts towards Sustainable Development Goals, with greater attention to understand effective strategies for implementation and governance. The study aimed to explore and map the composition and structure of a multisectoral initiative in tobacco control, identifying key factors engaged in policy implementation and their patterns of relationships in local-level networks in two districts in the state of Karnataka, India. METHODS: Social network analysis (SNA) was used to examine the structure of two district tobacco control networks with differences in compliance with the India's national tobacco control law. The survey was administered to 108 respondents (n=51 and 57) in two districts, producing three distinct network maps about interaction, information-seeking and decision-making patterns within each district. The network measures of centrality, density, reciprocity, centralisation and E-I index were used to understand and compare across the two districts. RESULTS: Members from the department of health, especially those in the District Tobacco Control Cell, were the most frequently consulted actors for information as they led district-level networks. The most common departments engaged beyond health were education, police and municipal. District 1's network displayed high centralisation, with a district nodal officer who exercised a central role with the highest in-degree centrality. The district also exhibited greater density and reciprocity. District 2 showed a more dispersed pattern, where subdistrict health managers had higher betweenness centrality and acted as brokers in the network. CONCLUSION: Collaboration and cooperation among sectors and departments are essential components of multisectoral policy. SNA provides a mechanism to uncover the nature of relationships and key actors in collaborative dynamics. It can be used as a visual learning tool for policy planners and implementers to understand the structure of actual implementation and concentrate their efforts to improve and enhance collaboration.
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Nicotiana , Análise de Rede Social , Humanos , Índia , Pobreza , Encaminhamento e ConsultaRESUMO
BACKGROUND: Consumer engagement is a requirement of high quality clinical guidelines. Developing strategies to engage consumers and incorporate the perspectives of individuals with or at risk of pressure ulcers/injuries and their informal caregivers was one priority in the recent update of the EPUAP/NPIAP/PPPIA's Prevention and Treatment of Pressure Ulcers/Injuries: Clinical Practice Guideline. AIMS: The aims were to determine the goals of individuals and caregivers for pressure ulcer/injury care, priorities for pressure ulcer/injury education and biggest problems related to pressure ulcers/injuries. METHODS: An online, anonymous, international 10-item survey, accessible in nine languages was provided to individuals and their caregivers from April to October 2018. Descriptive statistics were used for quantitative data and a thematic analysis approach was used to analyse qualitative data. RESULTS: There were 1233 individuals from 27 countries who completed the survey. Overall, individuals and caregivers had similar goals of care. Reducing the size of pressure ulcer/injury was selected more often as a care goal than complete healing. Individuals, compared to caregivers, considered managing pain more important. Qualitative data analysis identified five themes including knowledge, attitudes, and skills; risk factors for pressure ulcer/injury; accessing pressure ulcer/injury care; quality of life for patients and caregivers; and the pressure ulcer/injury. CONCLUSIONS: The consumer survey provided consumer engagement and perspective that was incorporated into guideline development, including consideration during evaluation of the relevance and acceptability of recommendations, and assignment of recommendation strength ratings.
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Cuidadores , Úlcera por Pressão , Humanos , Úlcera por Pressão/prevenção & controle , Qualidade de Vida , Higiene da Pele , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Advances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation. METHODS: A mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC. ETHICS AND DISSEMINATION: The McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.
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Cuidadores , Atenção à Saúde , Humanos , Criança , Projetos de Pesquisa , Assistência Centrada no Paciente , Cuidados CríticosRESUMO
BACKGROUND: The development and implementation of health policy have become more overt in the era of Sustainable Development Goals, with expectations for greater inclusivity and comprehensiveness in addressing health holistically. Such challenges are more marked in low- and middle-income countries (LMICs), where policy contexts, actor interests and participation mechanisms are not always well-researched. In this analysis of a multisectoral policy, the Tobacco Control Program in India, our objective was to understand the processes involved in policy formulation and adoption, describing context, enablers, and key drivers, as well as highlight the challenges of policy. METHODS: We used a qualitative case study methodology, drawing on the health policy triangle, and a deliberative policy analysis approach. We conducted document review and in-depth interviews with diverse stakeholders (n = 17) and anlayzed the data thematically. RESULTS: The policy context was framed by national law in India, the signing of a global treaty, and the adoption of a dedicated national program. Key actors included the national Ministry of Health and Family Welfare (MoHFW), State Health Departments, technical support organizations, research organizations, non-governmental bodies, citizenry and media, engaged in collaborative and, at times, overlapping roles. Lobbying groups, in particular the tobacco industry, were strong opponents with negative implications for policy adoption. The state-level implementation relied on creating an enabling politico-administrative framework and providing institutional structure and resources to take concrete action. CONCLUSION: Key drivers in this collaborative governance process were institutional mechanisms for collaboration, multi-level and effective cross-sectoral leadership, as well as political prioritization and social mobilization. A stronger legal framework, continued engagement, and action to address policy incoherence issues can lead to better uptake of multisectoral policies. As the impetus for multisectoral policy grows, research needs to map, understand stakeholders' incentives and interests to engage with policy, and inform systems design for joint action.
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Política de Saúde , Controle do Tabagismo , Humanos , Formulação de Políticas , Organizações , ÍndiaRESUMO
Person-centered care (PCC) is recognized as a key component of the delivery of quality healthcare and a model for healthcare systems worldwide. The experience of illness through a person's perspective is one domain defining PCC contributing to a growing interest in examining the lived experiences of illness. This scoping review sought to examine what is known from the existing literature about the lived experiences of persons gene-positive for or living with Huntington's disease (HD) as described in their own voices and to outline prominent psychosocial themes of those experiences. Five databases were systematically searched and analyzed resulting in 19 publications for inclusion. Using a thematic analysis, five prominent psychosocial themes were identified: grappling with control, avoidance as an escape from realities, adaptation to new realities, managing emotions, and appreciation for life. Variation in themes existed across HD life stage of being undiagnosed or diagnosed with HD. The findings of this review demonstrate that individuals who are gene-positive for or living with HD require support well beyond the disclosure of genetic testing and that it may be beneficial for healthcare providers to consider where along the life stage trajectory a person affected by HD may be to ensure the delivery of quality PCC.
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Doença de Huntington/diagnóstico , Doença de Huntington/terapia , Atenção à Saúde , Gerenciamento Clínico , Suscetibilidade a Doenças , Humanos , Doença de Huntington/epidemiologia , Doença de Huntington/etiologiaRESUMO
BACKGROUND AND AIMS: Multi-stakeholder partnerships offer strategic advantages in addressing multi-faceted issues in complex, fast-paced, and rapidly-evolving community health contexts. Synergistic partnerships mobilize partners' complementary financial and nonfinancial resources, resulting in improved outcomes beyond that achievable through individual efforts. Our objectives were to explore the manifestations of synergy in partnerships involving stakeholders from different organizations with an interest in implementing organizational solutions that enhance access to primary health care (PHC) for vulnerable populations, and to describe structures and processes that facilitated the work of these partnerships. METHODS: This was a longitudinal case study in two Canadian provinces of two collaborative partnerships involving decision makers, academic representatives, clinicians, health system administrators, patient partners, and representatives of health and social service organizations providing services to vulnerable populations. Document review, nonparticipant observation of partnerships' meetings (n = 14) and semi-structured in-depth interviews (n = 16) were conducted between 2016 and 2018. Data analysis involved a cross-case synthesis to compare the cases and framework analysis to identify prominent themes. RESULTS: Four major themes emerged from the data. Partnership synergy manifested itself in the following: (a) the integration of resources, (b) partnership atmosphere, (c) perceived stakeholder benefits, and (d) capacity for adaptation to context. Synergy developed before the intended PHC access outcomes could be assessed and acted both as a dynamic indicator of the health of the partnership and a source of energy fuelling partnership improvement and vitality. Synergistic action among multiple stakeholders was achieved through enabling processes at interpersonal, operational, and system levels. CONCLUSIONS: The partnership synergy framework is useful in assessing the intermediate outcomes of ongoing partnerships when it is too early to evaluate the achievement of long-term intended outcomes. Enabling processes require attention as part of routine partnership assessment.