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1.
AIDS Behav ; 2024 Sep 26.
Artículo en Inglés | MEDLINE | ID: mdl-39325117

RESUMEN

HIV stigma remains a barrier to good health and understanding how social support may reduce the negative impact of stigma on health may help with designing stigma interventions. This study aims to understand how different types of social support may moderate or change the nature of the relationship between stigma and mental health. We recruited 327 participants to complete the People Living with HIV Stigma Index at baseline (t1) between August 2018 and September 2019 and at follow-up (t2) between February 2021 and October 2021. Separate moderation models were created with different types of social support (emotional/informational, tangible, affectionate, positive social interaction) as moderators, baseline stigma (internalized, enacted, anticipated) as the antecedent, and mental health (t2) as the outcome. Emotional/informational support was a significant moderator for the relationship between enacted (b = -2.12, 95% CI: -3.73, -0.51), internalized (b = -1.72, 95% CI: -3.24, -0.20), and anticipated (b = -2.59, 95% CI: -4.59, -0.60) stigma at t1 and mental health at t2. Tangible support was a significant moderator for internalized stigma (b = -1.54, 95% CI: -2.74, -0.35). Lastly, positive social interaction was a significant moderator for internalized (b = -1.38, 95% CI: -2.71, -0.04) and anticipated stigma (b = -2.14, 95% CI: -3.93, -0.36). In general, the relationship between social support and better mental health was stronger for participants with low stigma. Intervention strategies aimed at both stigma reduction and boosting social supports with different functions may be important for improving the mental health of people living with HIV.

2.
AIDS Care ; : 1-10, 2024 Sep 17.
Artículo en Inglés | MEDLINE | ID: mdl-39285792

RESUMEN

Determinants of health are important drivers of health states, yet there is little work examining their role in the relationship between HIV stigma and health. This study uses moderation analysis to examine how determinants of health affect the relationship between enacted, internalized, and anticipated stigma and mental health. Quantitative data was collected on 337 participants in Ontario, Canada at baseline (t1) between August 2018 and September 2019 and at follow-up (t2) between February 2021 and October 2021. Separate moderation models were created with each determinant of health (age, gender, sexual orientation, ethnicity, geographic region, education, employment, and basic needs) acting as the moderator between types of stigma at t1 and mental health at t2. Age was a significant moderator for the relationship between internalized and enacted stigma at t1 and mental health at t2. Region was a moderator for enacted and anticipated stigma and mental health. Sexual orientation was a moderator for anticipated stigma and mental health. Lastly, having basic needs was a moderator for enacted and anticipated stigma and mental health. Our findings suggest that intervention strategies may be more effective by incorporating supports for these determinants of health in addition to stigma reduction to improve mental health.

3.
BMC Public Health ; 24(1): 2804, 2024 Oct 14.
Artículo en Inglés | MEDLINE | ID: mdl-39396934

RESUMEN

BACKGROUND: The COVID-19 pandemic and subsequent implementation of public health policies exacerbated multiple intersecting systemic inequities, including homelessness. Housing is a key social determinant of health that played a significant part in the front-line defence against COVID-19, posing challenges for service providers working with people experiencing homelessness (PEH). Public health practitioners and not-for-profit organizations (NFPs) had to adapt existing COVID-19 policies and implement novel measures to prevent the spread of disease within congregate settings, including shelters. It is essential to share the perspectives of service providers working with PEH and their experiences implementing policies to prepare for future public health emergencies and prevent service disruptions. METHODS: In this qualitative case study, we explored how service providers in the non-profit sector interpreted, conceptualized, and implemented COVID-19 public health outbreak control policies in Nova Scotia. We interviewed 11 service providers between September and December 2020. Using thematic analysis, we identified patterns and generated themes. Local, provincial, and national policy documents were useful to situate our findings within the first year of the COVID-19 pandemic and contextualize participants' experiences. RESULTS: Implementing policies in the context of homelessness was difficult for service providers, leading to creative temporary solutions, including pop-up shelters, a dedicated housing isolation phone line, comfort stations, and harm reduction initiatives, among others. There were distinct rural challenges to navigating the pandemic, which stemmed from technology limitations, lack of public transportation, and service closures. This case study illustrates the importance of flexible and context-specific policies required to support PEH and mitigate the personal and professional impact on service providers amid a public health emergency. Innovative services and public health collaboration also exemplified the ability to enhance housing services beyond the pandemic. CONCLUSIONS: The results of this project may inform context-specific emergency preparedness and response plans for COVID-19, future public health emergencies, and ongoing housing crises.


Asunto(s)
COVID-19 , Personas con Mala Vivienda , Investigación Cualitativa , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Nueva Escocia/epidemiología , Política de Salud , Vivienda , SARS-CoV-2
4.
BMC Health Serv Res ; 24(1): 1276, 2024 Oct 23.
Artículo en Inglés | MEDLINE | ID: mdl-39444012

RESUMEN

BACKGROUND: The transition from pediatric to adult care is a vulnerable time for young people living with type 1 diabetes (T1D). Bridging the Gap (BTG) is an audit-and-feedback (AF) intervention aimed at improving both transitions-in-care processes and diabetes management in the year following transition. As part of BTG, we conducted a qualitative process evaluation to understand: (a) what was implemented and how; and (b) the contextual factors (micro-, meso- and macro-) that affected implementation, outcomes and study processes. METHODS: Using qualitative descriptive methodology, interviews were conducted with 13 healthcare professionals (HCPs) delivering diabetes care to transitioning youth. Participants were asked about their experiences of BTG study processes and feedback tools, the quality improvement (QI) initiatives implemented at their site, and potential spread and scale. Interviews also explored the impacts of COVID-19 on transition care and study processes and results. RESULTS: Five key themes were identified. Participants' reflections on the BTG study design indicated they appreciated its flexible, site-specific approach to QI, which they saw as crucial to the success of their initiatives. Engagement with feedback reports and other study resources provided comparative, site-specific data. Participants described the challenges posed by the COVID-19 pandemic and its impacts on patients, care provision and study implementation. Their site-specific QI initiatives resulted in changes to their transition practices. Finally, participants commented on how BTG and its processes fostered a community of practice (CoP) between sites, resulting in new opportunities to collaborate and share experiences. CONCLUSIONS: BTG resulted in a CoP among practitioners delivering transition care to youth with T1D, which could be scaled up to promote a learning health system in pediatric diabetes care. Qualitative process evaluation is a useful tool for understanding how contextual factors affect the implementation and outcomes of complex QI interventions.


Asunto(s)
Diabetes Mellitus Tipo 1 , Investigación Cualitativa , Mejoramiento de la Calidad , Transición a la Atención de Adultos , Humanos , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto Joven , Personal de Salud/psicología , Masculino , Femenino , Adulto , COVID-19 , Entrevistas como Asunto , SARS-CoV-2
5.
CMAJ ; 195(7): E259-E266, 2023 02 21.
Artículo en Inglés | MEDLINE | ID: mdl-36810223

RESUMEN

BACKGROUND: Uptake of the SARS-CoV-2 vaccine for children aged 5-11 years has been lower than anticipated in Canada. Although research has explored parental intentions toward SARS-CoV-2 vaccination for children, parental decisions regarding vaccinations have not been studied in-depth. We sought to explore reasons why parents chose to vaccinate or not vaccinate their children against SARS-CoV-2 to better understand their decisions. METHODS: We conducted a qualitative study involving in-depth individual interviews with a purposive sample of parents in the Greater Toronto Area, Ontario, Canada. We conducted interviews via telephone or video call from February to April 2022 and analyzed the data using reflexive thematic analysis. RESULTS: We interviewed 20 parents. We found that parental attitudes toward SARS-CoV-2 vaccinations for their children represented a complex continuum of concern. We identified 4 cross-cutting themes: the newness of SARS-CoV-2 vaccines and the evidence supporting their use; the perceived politicization of guidance for SARS-CoV-2 vaccination; the social pressure surrounding SARS-CoV-2 vaccinations; and the weighing of individual versus collective benefits of vaccination. Parents found making a decision about vaccinating their child challenging and expressed difficulty sourcing and evaluating evidence, determining the trustworthiness of guidance, and balancing their own conceptions of health care decisions with societal expectations and political messaging. INTERPRETATION: Parents' experiences making decisions regarding SARS-CoV-2 vaccination for their children were complex, even for those who were supportive of SARS-CoV-2 vaccinations. These findings provide some explanation for the current patterns of uptake of SARS-CoV-2 vaccination among children in Canada; health care providers and public health authorities can consider these insights when planning future vaccine rollouts.


Asunto(s)
Vacunas contra la COVID-19 , COVID-19 , Humanos , Niño , SARS-CoV-2 , Vacunación , Padres , Ontario , Conocimientos, Actitudes y Práctica en Salud
6.
AIDS Care ; 35(8): 1091-1099, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36942573

RESUMEN

Levels of HIV stigma remain high, however there is a limited understanding around how different types of stigma interact to impact health. This study uses data from two time points to examine how enacted and internalized stigma lead to worse health through anticipated stigma as a mediator. We recruited 341 participants in Ontario, Canada to complete the HIV Stigma Index survey at baseline (t1) from September 2018 to August 2019 and follow up (t2) approximately two years later. Mediation models were created with enacted and internalized stigma at t1 as the antecedents, anticipated stigma at t2 as the mediator, and physical health, mental health, and overall health at t2 as the outcomes. Only the model with internalized stigma (t1) as the antecedent had anticipated stigma (t2) as a significant mediator contributing to both decreased mental and overall health. This highlights the need to address internalized stigma and the potential for anticipated stigma interventions to be effective at improving the health and wellbeing of people living with HIV.


Asunto(s)
Infecciones por VIH , Humanos , Estigma Social , Salud Mental , Encuestas y Cuestionarios , Ontario
7.
BMC Public Health ; 23(1): 888, 2023 05 15.
Artículo en Inglés | MEDLINE | ID: mdl-37189052

RESUMEN

INTRODUCTION: Opioid overdose epidemic is a public health crisis that is impacting communities around the world. Overdose education and naloxone distribution programs equip and train lay people to respond in the event of an overdose. We aimed to understand factors to consider for the design of naloxone distribution programs in point-of-care settings from the point of view of community stakeholders. METHODS: We hosted a multi-stakeholder co-design workshop to elicit suggestions for a naloxone distribution program. We recruited people with lived experience of opioid overdose, community representatives, and other stakeholders from family practice, emergency medicine, addictions medicine, and public health to participate in a full-day facilitated co-design discussion wherein large and small group discussions were audio-recorded, transcribed and analysed using thematic approaches. RESULTS: A total of twenty-four participants participated in the multi-stakeholder workshop from five stakeholder groups including geographic and setting diversity. Collaborative dialogue and shared storytelling revealed seven considerations for the design of naloxone distribution programs specific to training needs and the provision of naloxone, these are: recognizing overdose, how much naloxone, impact of stigma, legal risk of responding, position as conventional first aid, friends and family as responders, support to call 911. CONCLUSION: To create an naloxone distribution program in emergency departments, family practice and substance use treatment services, stigma is a central design consideration for training and naloxone kits. Design choices that reference the iconography, type, and form of materials associated with first aid have the potential to satisfy the need to de-stigmatize overdose response.


Asunto(s)
Sobredosis de Droga , Sobredosis de Opiáceos , Trastornos Relacionados con Opioides , Humanos , Naloxona/uso terapéutico , Antagonistas de Narcóticos/uso terapéutico , Sobredosis de Opiáceos/complicaciones , Sobredosis de Opiáceos/tratamiento farmacológico , Sobredosis de Droga/tratamiento farmacológico , Sobredosis de Droga/prevención & control , Servicio de Urgencia en Hospital , Trastornos Relacionados con Opioides/tratamiento farmacológico , Analgésicos Opioides/uso terapéutico
8.
BMC Health Serv Res ; 23(1): 1074, 2023 Oct 07.
Artículo en Inglés | MEDLINE | ID: mdl-37805603

RESUMEN

BACKGROUND: During the COVID-19 pandemic, healthcare systems and healthcare workers (HCWs) faced significant demands and unique challenges. In this qualitative study, we explore the effects of the COVID-19 public health policies on British Columbia's frontline HCWs, describe what worked in the management of the pandemic, and elucidate the lessons learned that could be applied to future pandemic preparedness, recovery and response. METHODS: This qualitative descriptive study is part of a larger, national multi-case study on pandemic policy communication and uptake. Semi-structured interviews were conducted from November 2020- June 2021 with fourteen HCWs working in long-term care (LTC), acute care and public health settings. Data were inductively coded, and analyzed following a resilience framework for public health emergency preparedness, which emphasizes the essential elements of a public health system, vital to all phases of health emergency management, readiness, response and recovery. RESULTS: HCWs experienced confusion, frustration, uncertainty, anxiety, fatigue and stress, during the pandemic and detailed challenges that affected policy implementation. This included communication and coordination inconsistencies between the province and regional health authorities; lack of involvement of frontline staff in pandemic planning; inadequate training and support; inadequate personal protective equipment resource capacity and mobilization; and staffing shortages. HCWs recommended increased collaboration between frontline staff and policy makers, investment in preparing and practicing pandemic plans, and the need for training in emergency management and infection prevention and control. CONCLUSIONS: Pandemic planning, response and recovery should include inputs from actors/key stakeholders at the provincial, regional and local levels, to facilitate better coordination, communication and outcomes. Also, given the critical roles of frontline HCWs in policy implementation, they should be adequately supported and consideration must be given to how they interpret and act on policies. Bi-directional communication channels should be incorporated between policymakers and frontline HCWs to verify the appropriate adoption of policies, reflective learning, and to ensure policy limitations are being communicated and acted upon by policy makers.


Asunto(s)
COVID-19 , Humanos , COVID-19/epidemiología , Pandemias , Personal Administrativo , Ansiedad , Personal de Salud
9.
Circulation ; 143(7): 641-649, 2021 02 16.
Artículo en Inglés | MEDLINE | ID: mdl-33317326

RESUMEN

BACKGROUND: Studies examining gender-based differences in outcomes of patients experiencing out-of-hospital cardiac arrest have demonstrated that, despite a higher likelihood of return of spontaneous circulation, women do not have higher survival. METHODS: Patients successfully resuscitated from out-of-hospital cardiac arrest enrolled in the CCC trial (Trial of Continuous or Interrupted Chest Compressions during CPR) were included. Hierarchical multivariable logistic regression models were constructed to evaluate the association between gender and survival after adjustment for age, gender, cardiac arrest rhythm, witnessed status, bystander cardiopulmonary resuscitation, episode location, epinephrine dose, emergency medical services response time, and duration of resuscitation. Do not resuscitate (DNR) and withdrawal of life-sustaining therapy (WLST) order status were used to assess whether differences in postresuscitation outcomes were modified by baseline prognosis. The analysis was replicated among ALPS trial (Amiodarone, Lidocaine, or Placebo in Out-of-Hospital Cardiac Arrest) participants. RESULTS: Among 4875 successfully resuscitated patients, 1825 (37.4%) were women and 3050 (62.6%) were men. Women were older (67.5 versus 65.3 years), received less bystander cardiopulmonary resuscitation (49.1% versus 54.9%), and had a lower proportion of cardiac arrests that were witnessed (55.1% versus 64.5%) or had shockable rhythm (24.3% versus 44.6%, P<0.001 for all). A significantly higher proportion of women received DNR orders (35.7% versus 32.1%, P=0.009) and had WLST (32.8% versus 29.8%, P=0.03). Discharge survival was significantly lower in women (22.5% versus 36.3%, P<0.001; adjusted odds ratio, 0.78 [95% CI, 0.66-0.93]; P=0.005). The association between gender and survival to discharge was modified by DNR and WLST order status such that women had significantly reduced survival to discharge among patients who were not designated DNR (31.3% versus 49.9%, P=0.005; adjusted odds ratio, 0.74 [95% CI, 0.60-0.91]) or did not have WLST (32.3% versus 50.7%, P=0.002; adjusted odds ratio, 0.73 [95% CI, 0.60-0.89]). In contrast, no gender difference in survival was noted among patients receiving a DNR order (6.7% versus 7.4%, P=0.90) or had WLST (2.8% versus 2.4%, P=0.93). Consistent patterns of association between gender and postresuscitation outcomes were observed in the secondary cohort. CONCLUSIONS: Among patients resuscitated after experiencing out-of-hospital cardiac arrest, discharge survival was significantly lower in women than in men, especially among patients considered to have a favorable prognosis.


Asunto(s)
Paro Cardíaco Extrahospitalario/epidemiología , Anciano , Reanimación Cardiopulmonar , Femenino , Humanos , Masculino , Paro Cardíaco Extrahospitalario/mortalidad , Pronóstico , Factores Sexuales , Análisis de Supervivencia , Factores de Tiempo , Resultado del Tratamiento
10.
Health Expect ; 25(5): 2440-2452, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35909312

RESUMEN

INTRODUCTION: Overdose education and naloxone distribution (OEND) programmes equip and train people who are likely to witness an opioid overdose to respond with effective first aid interventions. Despite OEND expansion across North America, overdose rates are increasing, raising questions about how to improve OEND programmes. We conducted an iterative series of codesign stakeholder workshops to develop a prototype for take-home naloxone (THN)-kit (i.e., two doses of intranasal naloxone and training on how to administer it). METHODS: We recruited people who use opioids, frontline healthcare providers and public health representatives to participate in codesign workshops covering questions related to THN-kit prototypes, training on how to use it, and implementation, including refinement of design artefacts using personas and journey maps. Completed over 9 months, the workshops were audio-recorded and transcribed with visible results of the workshops (i.e., sticky notes, sketches) archived. We used thematic analyses of these materials to identify design requirements for THN-kits and training. RESULTS: We facilitated 13 codesign workshops to identify and address gaps in existing opioid overdose education training and THN-kits and emphasize timely response and stigma in future THN-kit design. Using an iterative process, we created 15 prototypes, 3 candidate prototypes and a final prototype THN-kit from the synthesis of the codesign workshops. CONCLUSION: The final prototype is available for a variety of implementation and evaluation processes. The THN-kit offers an integrated solution combining ultra-brief training animation and physical packaging of nasal naloxone to be distributed in family practice clinics, emergency departments, addiction medicine clinics and community settings. PATIENT OR PUBLIC CONTRIBUTION: The codesign process was deliberately structured to involve community members (the public), with multiple opportunities for public contribution. In addition, patient/public participation was a principle for the management and structuring of the research team.


Asunto(s)
Medicina de las Adicciones , Sobredosis de Droga , Sobredosis de Opiáceos , Humanos , Naloxona/uso terapéutico , Medicina Familiar y Comunitaria , Antagonistas de Narcóticos/uso terapéutico , Sobredosis de Droga/tratamiento farmacológico , Servicio de Urgencia en Hospital
11.
Healthc Q ; 24(SP): 86-92, 2022 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-35467517

RESUMEN

Equity-Mobilizing Partnerships in Community (EMPaCT) is a novel approach to patient engagement that centres diverse lived experiences and promotes equity-oriented and inclusive partnerships. As an independent community table, EMPaCT is made up primarily of patients/diverse members of community. Researchers and other decision makers come to this table with their projects to learn how to make their project more inclusive and equitable. In this paper, we detail how we used participatory co-design to define, build and grow EMPaCT as an innovative and scalable patient partnership model that promotes bottom-up action for health equity.


Asunto(s)
Equidad en Salud , Investigación Participativa Basada en la Comunidad , Promoción de la Salud , Humanos , Participación del Paciente , Investigadores
12.
BMC Public Health ; 21(1): 1595, 2021 09 09.
Artículo en Inglés | MEDLINE | ID: mdl-34496825

RESUMEN

BACKGROUND: Experiences of HIV stigma remain prevalent across Canada, causing significant stress and negatively affecting the health and wellbeing of people living with HIV. While studies have consistently demonstrated that stigma negatively impacts health, there has been limited research on the mechanisms behind these effects. This study aims to identify which dimensions of stigma have significant relationships with self-rated health and examine the mechanisms by which those types of stigma impact self-rated health. METHODS: We recruited 724 participants to complete the People Living with HIV Stigma Index in Ontario, designed by people living with HIV to measure nuanced changes in stigma and discrimination. The present study utilizes data from externally validated measures of stigma and health risks that were included in the survey. First, we conducted multiple regression analyses to examine which variables had a significant impact on self-rated health. Results from the multiple regression guided the mediation analysis. A parallel mediation model was created with enacted stigma as the antecedent, internalized stigma and depression as the mediators, and self-rated health as the outcome. RESULTS: In the multiple regression analysis, internalized stigma (coefficient = -0.20, p < 0.01) and depression (coefficient = -0.07, p < 0.01) were both significant and independent predictors of health. Mediation analyses demonstrated that the relationship between enacted stigma and self-rated health is mediated in parallel by both internalized stigma [coefficient = -0.08, se = 0.03, 95% CI (-0.14, -0.02)] and depression [coefficient = -0.16, se = 0.03, 95% CI (-0.22, -0.11)]. CONCLUSIONS: We developed a mediation model to explain how HIV-related stigma negatively impacts health. We found that that enacted stigma, or experiences of prejudice or discrimination, can lead to internalized stigma, or internalization of negative thoughts regarding one's HIV status and/or increased depressive symptoms which then may lead to worse overall health. Highlighting the importance of internalized stigma and depression has the potential to shape the development of targeted intervention strategies aimed at reducing the burden of stigma and improving the health and wellbeing of people living with HIV.


Asunto(s)
Depresión , Infecciones por VIH , Depresión/epidemiología , Humanos , Ontario/epidemiología , Prejuicio , Estigma Social
13.
Cancer ; 126(7): 1550-1558, 2020 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-31914209

RESUMEN

BACKGROUND: Patients with cancer who are treated with immune checkpoint modulators (ICMs) have their health-related quality of life (HRQOL) measured using general patient-reported outcome (PRO) tools. To the authors' knowledge, no instrument has been developed to date specifically for patients treated with ICMs. The objective of the current study was to develop a toxicity subscale PRO instrument for patients treated with ICMs to assess HRQOL. METHODS: Input was collected from a systematic review as well as patients and physicians experienced with ICM treatment. Descriptive thematic analysis was used to evaluate the qualitative data obtained from patient focus groups and interviews, which informed an initial list of items that described ICM side effects and their impact on HRQOL. These inputs informed item generation and/or reduction to develop a toxicity subscale. RESULTS: Focus groups and individual interviews with 37 ICM-treated patients generated an initial list of 176 items. After a first round of item reduction that produced a shortened list of 76 items, 16 physicians who care for patients who are treated with ICMs were surveyed with a list of 49 patient-reported side effects and 11 physicians participated in follow-up interviews. A second round of item reduction was informed by the physician responses to produce a list of 25 items. CONCLUSIONS: To the authors' knowledge, this 25-item list is the first HRQOL-focused toxicity subscale for patients treated with ICMs and was developed in accordance with US Food and Drug Administration guidelines, which prioritize patient input in developing PRO tools. The subscale will be combined with the Functional Assessment of Cancer Therapy-General (FACT-G) to form the FACT-ICM. Prior to recommending the formal use of this PRO instrument, the authors will evaluate its validity and reliability in longitudinal studies involving substantially more patients.


Asunto(s)
Inmunoterapia/efectos adversos , Neoplasias/tratamiento farmacológico , Medición de Resultados Informados por el Paciente , Psicometría/instrumentación , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad
14.
BMC Cancer ; 19(1): 264, 2019 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-30909874

RESUMEN

BACKGROUND: Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients' lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them. METHODS: Qualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants' accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients' treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns. RESULTS: The interviews identified important side effects that had significant impacts on patients' lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients' priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities. CONCLUSIONS: RRMM and its treatments impact importantly on patients' quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens. IMPLICATIONS FOR CANCER SURVIVORS: A clear articulation of patient priorities can contribute to efforts to design treatment with patients' concerns in mind, thereby promoting a more patient-centered approach to care.


Asunto(s)
Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/psicología , Mieloma Múltiple/tratamiento farmacológico , Calidad de Vida/psicología , Anciano , Anciano de 80 o más Años , Canadá , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Esperanza de Vida , Masculino , Persona de Mediana Edad , Mieloma Múltiple/psicología , Investigación Cualitativa , Recurrencia
15.
BMC Health Serv Res ; 19(1): 885, 2019 Nov 25.
Artículo en Inglés | MEDLINE | ID: mdl-31766999

RESUMEN

BACKGROUND: When young adults transfer from pediatric to adult diabetes care they are at risk for deterioration of glycemic control, putting them at an increased risk of developing both acute and chronic complications. Despite increased awareness of these risks, there are gaps in care delivery during this vulnerable time and variability in the implementation of recommended transition practice. Audit and feedback (AF) interventions have a positive but variable effect on implementation of best practices. An expert group identified specific suggestions for optimizing the effectiveness of AF interventions. We aim to test an AF-based intervention incorporating these specific suggestions to improve transition practices and glycemic control in the first year after transfer from pediatric to adult diabetes care. METHODS: This is a pragmatic quasi-experimental study; a series of three cohort studies (pre-implementation, early-implementation, and post-implementation) to compare the baseline adjusted hemoglobin A1c (HbA1c) in the 12 months after the final pediatric visit in five pediatric diabetes centres within the Ontario Pediatric Diabetes Network in Ontario, Canada. The intervention includes three components: 1) centre-level feedback reports compiling data from chart abstraction, linked provincial administrative datasets, and patient-reported experience measures; 2) webinars for facilitated conversations/coaching about the feedback; and 3) online repository of curated transition resources for providers. The primary outcome will be analyzed using a multivariable linear regression model. We will conduct a qualitative process evaluation to understand intervention fidelity and to provide insight into the mechanisms of action of our results. DISCUSSION: There is a need to develop an innovative system-level approach to improve outcomes and the quality of care for young adults with type 1 diabetes during the vulnerable time when they transfer to adult care. Our research team, a collaboration of health services, implementation science, and quality improvement researchers, are designing, implementing, and evaluating an AF-based intervention using recommendations about how to optimize effectiveness. This knowledge will be generalizable to other care networks that aim to deliver uniformly high-quality care in diverse care settings. TRIAL REGISTRATION: ClinicalTrials.gov NCT03781973. Registered 13 December 2018. Date of enrolment of the first participant to the trial: June 1, 2019.


Asunto(s)
Glucemia/metabolismo , Diabetes Mellitus Tipo 1/terapia , Mejoramiento de la Calidad , Transición a la Atención de Adultos/organización & administración , Adolescente , Retroalimentación , Investigación sobre Servicios de Salud , Humanos , Auditoría Médica , Ontario , Proyectos de Investigación , Adulto Joven
16.
Qual Health Res ; 29(5): 758-773, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30296921

RESUMEN

Within mainstream cancer literature, policy documents, and clinical practice, "work" is typically characterized as being synonymous with paid employment, and the problem of work is situated within the "return to work" discourse. The work that patients perform in managing their health, care, and everyday life at times of illness, however, is largely overlooked and unsupported. Drawing on feminist political economy theory, we report on a qualitative study of 12 women living with cancer. Major findings show that the work of patienthood cut across multiple fields of practice and included both paid and unpaid labor. The most prevalent types of work included illness work, body work, identity work, everyday work, paid employment and/or the work of maintaining income, and coordination work. The findings of this study disrupt popular conceptualizations of work and illuminate the nuanced and often invisible work that cancer patients may encounter, and the health consequences and inequities therein.


Asunto(s)
Neoplasias/psicología , Pacientes/psicología , Rol del Enfermo , Salud de la Mujer , Trabajo/psicología , Adulto , Anciano , Antropología Cultural , Canadá , Empleo/psicología , Femenino , Feminismo , Identidad de Género , Humanos , Entrevistas como Asunto , Persona de Mediana Edad , Política
17.
Qual Health Res ; 27(12): 1765-1774, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28936929

RESUMEN

Critical qualitative health researchers typically occupy and navigate liminal academic spaces and statuses, with one foot planted in the arts and social sciences and the other in biomedical science. We are at once marginalized and empowered, and this liminality presents both challenges and opportunities. In this article, we draw on our experiences of being (often the lone) critical qualitative health scholars on thesis advisory committees and dissertation examinations, as well as our experiences of publishing and securing funding, to illuminate how power and knowledge relations create conditions that shape the nature of our roles. We share strategies we have developed for standing our theoretical and methodological ground. We discuss how we use the power of our liminality to hold firm, push back, and push forward, to ensure that critical qualitative research is not further relegated to the margins and its quality and integrity sustained.


Asunto(s)
Investigación sobre Servicios de Salud , Poder Psicológico , Investigación Cualitativa , Tesis Académicas como Asunto , Docentes Médicos , Investigación sobre Servicios de Salud/métodos , Investigación sobre Servicios de Salud/organización & administración , Investigación sobre Servicios de Salud/normas , Humanos , Publicaciones , Apoyo a la Investigación como Asunto
19.
Afr J AIDS Res ; 14(1): 51-6, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25920983

RESUMEN

This paper focuses on accounts of how having a disability and being HIV-positive influences experiences of work among 21 people (12 women, 9 men) in Lusaka, Zambia. In-depth semi-structured interviews were conducted in English, Bemba, Nyanja, or Zambian sign language. Descriptive and thematic analyses were conducted. Three major themes were generated. The first, a triple burden, describes the burden of having a disability, being HIV-positive, and being unemployed. The second theme, disability and HIV is not inability, describes participants' desire for work and their resistance to being regarded as objects of charity. Finally, how work influences HIV management, describes the practicalities of working and living with HIV. Together these themes highlight the limited options available to persons with disabilities with HIV in Lusaka, not only secondary to the effects of HIV influencing their physical capacity to work, but also because of the attendant social stigma of being a person with a disability and HIV-positive.


Asunto(s)
Personas con Discapacidad/psicología , Infecciones por VIH/psicología , Adulto , Femenino , Humanos , Masculino , Estigma Social , Trabajo , Adulto Joven , Zambia
20.
PLoS Med ; 11(2): e1001588, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24505216

RESUMEN

BACKGROUND: Printed educational materials for clinician education are one of the most commonly used approaches for quality improvement. The objective of this pragmatic cluster randomized trial was to evaluate the effectiveness of an educational toolkit focusing on cardiovascular disease screening and risk reduction in people with diabetes. METHODS AND FINDINGS: All 933,789 people aged ≥40 years with diagnosed diabetes in Ontario, Canada were studied using population-level administrative databases, with additional clinical outcome data collected from a random sample of 1,592 high risk patients. Family practices were randomly assigned to receive the educational toolkit in June 2009 (intervention group) or May 2010 (control group). The primary outcome in the administrative data study, death or non-fatal myocardial infarction, occurred in 11,736 (2.5%) patients in the intervention group and 11,536 (2.5%) in the control group (p = 0.77). The primary outcome in the clinical data study, use of a statin, occurred in 700 (88.1%) patients in the intervention group and 725 (90.1%) in the control group (p = 0.26). Pre-specified secondary outcomes, including other clinical events, processes of care, and measures of risk factor control, were also not improved by the intervention. A limitation is the high baseline rate of statin prescribing in this population. CONCLUSIONS: The educational toolkit did not improve quality of care or cardiovascular outcomes in a population with diabetes. Despite being relatively easy and inexpensive to implement, printed educational materials were not effective. The study highlights the need for a rigorous and scientifically based approach to the development, dissemination, and evaluation of quality improvement interventions. TRIAL REGISTRATION: http://www.ClinicalTrials.gov NCT01411865 and NCT01026688.


Asunto(s)
Técnicas de Apoyo para la Decisión , Complicaciones de la Diabetes/prevención & control , Diabetes Mellitus/terapia , Educación Médica Continua/métodos , Infarto del Miocardio/prevención & control , Mejoramiento de la Calidad , Indicadores de Calidad de la Atención de Salud , Adulto , Anciano , Algoritmos , Actitud del Personal de Salud , Complicaciones de la Diabetes/diagnóstico , Complicaciones de la Diabetes/etiología , Complicaciones de la Diabetes/mortalidad , Diabetes Mellitus/diagnóstico , Diabetes Mellitus/mortalidad , Medicina Familiar y Comunitaria , Femenino , Adhesión a Directriz , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Infarto del Miocardio/diagnóstico , Infarto del Miocardio/etiología , Infarto del Miocardio/mortalidad , Ontario , Guías de Práctica Clínica como Asunto , Medición de Riesgo , Factores de Riesgo , Resultado del Tratamiento
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