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Engagement of patients and the public in health research is crucial for ensuring research relevance and alignment with community needs. However, there is a lack of nuanced evaluations and examples that promote collaborative and reflective learning about partnerships with partners. The aim of this paper is to provide a case example of a participatory evaluation of the engagement of older adult partners in an aging-focused research centre. We outline our process of co-planning and implementing an evaluation of the McMaster Collaborative for Health and Aging's engagement strategy through the use of multiple methods, including a standardized tool and qualitative approaches. The team chose to explore and capture the engagement experiences and perspectives of the older adult partners within the Collaborative using a survey (the Public and Patient Engagement Evaluation Tool (PPEET)), an art-based method (photovoice), and a focus group. We present a brief summary of the findings but primarily focus this paper on the experiences of using each methodology and tool, with an emphasis on promoting dialogue on the benefits, limitations, and challenges. We reflect on the process of co-planning and the integration of both standardized tools and qualitative approaches to adopt a holistic approach to evaluating partnership within the Collaborative. Ultimately, this case example aims to provide practical guidance for other research groups navigating the complexities of partnership engagement and evaluation, thereby promoting meaningful partnerships in research.
Engaging older adults in research is important to match research study goals with older adult needs and interests and can lead to better health outcomes and a more equitable healthcare system. Yet, older adults are often excluded from research due to the idea that they can be a challenging group with whom to work. The McMaster Collaborative for Health and Aging is a provincial research centre established to engage patients, researchers, and other key partners to improve the health of and the healthcare system for older adults. The Collaborative partners with older adults and caregivers in all its activities and projects. For example, older adults mentor students and advise on patient-partnered research projects and co-facilitate workshops. There are many frameworks and models to support research partnerships with people with lived experience. Yet, evaluating the quality and impacts of these partnerships is less common. This paper presents a case example of a participatory evaluation of older adult partners' engagement in the Collaborative. Together, older adult partners and researchers decided on the project goals and methods. The evaluation used multiple methods to capture partners' experiences and perspectives on the process and impact of their engagement in research. First, a survey called the Public and Patient Engagement Evaluation Tool (PPEET) was completed. Second, photovoice was used (a method involving photography for self-expression). Finally, a focus group was conducted (discussions with partners facilitated by researchers). We reflect on the benefits and limitations of each method and make recommendations for future evaluations. The paper underscores considering partner preferences and abilities when choosing evaluation methods for patient-partnered research.
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BACKGROUND: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. METHODS: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). RESULTS: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. CONCLUSIONS: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.
Subject(s)
HIV Infections , Patient Reported Outcome Measures , Adult , United States , Humans , Ireland , Reproducibility of Results , Canada , United KingdomABSTRACT
Background: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. Methods: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; >0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; >0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). Results: 359 participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. Conclusions: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.
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INTRODUCTION: Our aim is to evaluate the implementation of an online telecoaching community-based exercise (CBE) intervention with the goal of reducing disability and enhancing physical activity and health among adults living with HIV. METHODS AND ANALYSIS: We will conduct a prospective longitudinal mixed-methods two-phased intervention study to pilot the implementation of an online CBE intervention with ~30 adults (≥18 years) living with HIV who consider themselves safe to participate in exercise. In the intervention phase (0-6 months), participants will take part in an online CBE intervention involving thrice weekly exercise (aerobic, resistance, balance and flexibility), with supervised biweekly personal training sessions with a fitness instructor, YMCA membership providing access to online exercise classes, wireless physical activity monitor to track physical activity and monthly online educational sessions on topics related to HIV, physical activity and health. In the follow-up phase (6-12 months), participants will be encouraged to continue independent exercise thrice weekly. Quantitative assessment: Bimonthly, we will assess cardiopulmonary fitness, strength, weight, body composition and flexibility, followed by administering self-reported questionnaires to assess disability, contextual factor outcomes (mastery, engagement in care, stigma, social support), implementation factors (cost, feasibility, technology), health status and self-reported physical activity. We will conduct a segmented regression analyses to describe the change in level and trend between the intervention and follow-up phases. Qualitative assessment: We will conduct online interviews with a subsample of ~10 participants and 5 CBE stakeholders at baseline (month 0), postintervention (month 6) and end of follow-up (month 12) to explore experiences, impact and implementation factors for online CBE. Interviews will be audiorecorded and analysed using content analytical techniques. ETHICS AND DISSEMINATION: Protocol approved by the University of Toronto Research Ethics Board (Protocol # 40410). Knowledge translation will occur in the form of presentations and publications in open-access peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05006391.
Subject(s)
HIV Infections , Implementation Science , Humans , Adult , Prospective Studies , Exercise , Exercise Therapy , Quality of LifeABSTRACT
OBJECTIVES: The Short-Form HIV Disability Questionnaire (SF-HDQ) was developed to measure the presence, severity and episodic nature of health challenges across six domains. Our aim was to assess the sensibility, utility and implementation of the SF-HDQ in clinical practice. DESIGN: Mixed methods study design involving semistructured interviews and questionnaire administration. PARTICIPANTS: We recruited adults living with HIV and HIV clinicians in Canada, Ireland and the USA. METHODS: We electronically administered the SF-HDQ followed by a Sensibility Questionnaire (face and content validity, ease of usage, format) and conducted semistructured interviews to explore the utility and implementation of the SF-HDQ in clinical practice. The threshold for sensibility was a median score of >5/7 (adults living with HIV) and>4/7 (HIV clinicians) for ≥80% of items. Qualitative interview data were analysed using directed content analysis. RESULTS: Median sensibility scores were >5 (adults living with HIV; n=29) and >4 (HIV clinicians; n=16) for 18/19 (95%) items. Interview data indicated that the SF-HDQ represents the health-related challenges of living with HIV and other concurrent health conditions; captures the daily episodic nature of HIV; and is easy to use. Clinical utility included measuring health challenges and change over time, guiding referral to specialists and services, setting goals, facilitating communication and fostering a multidisciplinary approach to care. Considerations for implementation included flexible, person-centred approaches to administration, and communicating scores based on personal preferences. CONCLUSIONS: The SF-HDQ possesses sensibility and utility for use in clinical settings with adults living with HIV and HIV clinicians in three countries.
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HIV Infections , Organizations , Adult , Canada , HIV Infections/diagnosis , Humans , Ireland , Surveys and QuestionnairesABSTRACT
BACKGROUND: People living with HIV (PLWH) who use drugs in harmful amounts, types and/or modes of consumption (e.g., drugs from unregulated sources) experience barriers to accessing conventional healthcare services. The overall experience of PLWH who use drugs while admitted to hospital directly influences their treatment engagement. Members of interdisciplinary care teams within hospitals can shape the experiences of PLWH who use drugs by virtue of direct practice. However, little discussion in the research literature articulates the self-reported experiences of PLWH who use drugs specific to their time spent in hospital METHODS: Semi-structured interviews were conducted with participants who: i) self-reported HIV ii) had a hospital admission in the past year; and iii) used drugs at time of admission. A structuration theory-guided thematic analysis was used to understand the beliefs and practices identified by participants that affect their hospital admission experience RESULTS: Participants (n = 22) identified two sets of rules that influence their hospital admission; personal rules, used for navigating the admission, and hospital rules (i.e., "their rules"). Participants indicated that healthcare providers' use of a constructed difficult patient identity shaped their experiences while admitted as hospital in-patients CONCLUSION: Healthcare equity is not possible when all people are treated the same; social practices occurring during a hospital admission privilege some (e.g., healthcare providers) and not others (e.g., PLWH who use drugs) and will continue to dictate the hospital admission experience of PLWH who use drugs. Hospitalized PLWH who use drugs can change their actions, ergo altering social practices between themselves and health care providers leading to a positive effect on the overall hospital admission experience. However, barriers experienced by PLWH who use drugs limit the degree to which they can implement effective positive change.
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HIV Infections , Delivery of Health Care , HIV Infections/drug therapy , Health Personnel , Hospitalization , Hospitals , Humans , Qualitative ResearchABSTRACT
OBJECTIVES: To describe the need for, and utility of, online community-based exercise (CBE) interventions with adults living with HIV and identify factors to consider in developing and implementing an online CBE intervention with adults living with HIV. DESIGN: Qualitative descriptive study using web-based semistructured interviews. PARTICIPANTS: We recruited adults representing at least one of five stakeholder groups with experience in CBE and/or HIV: (1) adults living with HIV, (2) rehabilitation professionals, (3) fitness personnel, (4) educators with eLearning experience and (5) representatives from HIV community-based organisations (CBOs). DATA COLLECTION: We asked participants to describe their experiences with online CBE, need and utility for online CBE and factors in developing and implementing online CBE interventions. We analysed data using a group-based thematic analytical approach. RESULTS: Among the 11 participants, most had experience working with adults living with HIV (73%) or with telehealth/rehabilitation/coaching in HIV or other chronic conditions (91%). Participants (eight women; two men; one non-binary; median age: 49 years), identified the need and utility for online CBE interventions to increase accessibility and continuity of care with adults living with HIV. Six factors to consider in developing and implementing online CBE included: (1) person-specific considerations (episodic nature of HIV, stigma, HIV disclosure), (2) accessibility of programme (physical space to exercise, reliable internet, access to devices, digital literacy), (3) programme delivery and technology (live vs prerecorded online classes, multiple online platforms for delivery, physical activity tracking, troubleshooting technology), (4) attributes of programme personnel (working with CBOs, relatable instructors, diverse staff), (5) programme content and design (tailored exercise classes, educational sessions) and (6) building community (shared experiences, peer support, social opportunities). CONCLUSIONS: There is a need and utility for online CBE in the context of HIV. Considerations for development and implementation span individual, structural and technical, and community dimensions. Results can inform the future development and implementation of online CBE with adults living with HIV and other chronic episodic conditions.
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HIV Infections , Adult , Exercise , Exercise Therapy , Female , HIV Infections/therapy , Humans , Male , Middle Aged , Qualitative Research , Social StigmaABSTRACT
INTRODUCTION: As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID. METHODS AND ANALYSIS: In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test-retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach's alphas (internal consistency reliability), and intraclass correlation coefficients (test-retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic-clinical-community partnership building on foundational work in ED measurement, Long COVID and rehabilitation. ETHICS AND DISSEMINATION: This study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.
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COVID-19 , HIV Infections , Adult , COVID-19/complications , Concept Formation , Disability Evaluation , HIV Infections/rehabilitation , Humans , Psychometrics/methods , Reproducibility of Results , SARS-CoV-2 , Surveys and Questionnaires , Post-Acute COVID-19 SyndromeABSTRACT
BACKGROUND: People who use drugs (PWUD), and especially those who inject drugs, are at increased risk of acquiring bloodborne infections (e.g., HIV and HCV), experiencing drug-related harms (e.g., abscesses and overdose), and being hospitalized and requiring inpatient parenteral antibiotic therapy delivered through a peripherally inserted central catheter (PICC). The use of PICC lines with PWUD is understood to be a source of tension in hospital settings but has not been well researched. Drawing on theoretical and analytic insights from "new materialism," we consider the assemblage of sociomaterial elements that inform the use of PICCs. METHODS: This paper draws on n = 50 interviews conducted across two related qualitative research projects within a program of research about the impact of substance use on hospital admissions from the perspective of healthcare providers (HCPs) and people living with HIV/HCV who use drugs. This paper focuses on data about PICC lines collected in both studies. RESULTS: The decision to provide, maintain, or remove a PICC is based on a complex assemblage of factors (e.g., infections, bodies, drugs, memories, relations, spaces, temporalities, and contingencies) beyond whether parenteral intravenous antibiotic therapy is clinically indicated. HCPs expressed concerns about the risk posed by past, current, and future drug use, and contact with non-clinical spaces (e.g., patient's homes and the surrounding community), with some opting for second-line treatments and removing PICCs. The majority of PWUD described being subjected to threats of discharge and increased monitoring despite being too ill to use their PICC lines during past hospital admissions. A subset of PWUD reported using their PICC lines to inject drugs as a harm reduction strategy, and a subset of HCPs reported providing harm reduction-centred care. CONCLUSION: Our analysis has implications for theorizing the role of PICC lines in the care of PWUD and identifies practical guidance for engaging them in productive and non-judgemental discussions about the risks of injecting into a PICC line, how to do it safely, and about medically supported alternatives.
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Catheterization, Central Venous , HIV Infections , Hepatitis C , Pharmaceutical Preparations , Catheterization, Central Venous/adverse effects , Catheters , HIV Infections/drug therapy , Hepatitis C/drug therapy , Hospitals , Humans , Retrospective Studies , Risk FactorsABSTRACT
BackgroundEvents associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. 'Living strategies' is a concept derived from the perspective of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic. MethodsAdults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June-August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least 'a few times a week' or 'everyday' during the pandemic. ResultsOf the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty (median 30; Interquartile range (IQR): 16, 43) and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p<0.001), severity (11.4; p<0.001), and episodic nature (9.3; p<0.05) of disability. Most participants (>60%) reported engaging a 'few times a week' or 'everyday' in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs. ConclusionsPeople living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic.
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BACKGROUND: Since many people now live with human immunodeficiency virus (HIV) as a complex, chronic health condition that may require frequent medical and psychosocial services, a potential new role for HIV-positive peers involves support during an inpatient admission that extends past discharge to improve the transition home from hospital. We sought to begin outlining scope of peer support in complex HIV care, by detailing a training curriculum alongside experiences and recommendations by Peer Volunteers. METHODS: A community-clinical partnership designed a personalized peer intervention for people living with HIV who were acutely hospitalized and struggling with antiretroviral adherence and substance use. Five Peer Volunteers delivered the program, which involved being matched with a participant for a pre-discharge in-person meeting followed by frequent phone contact in the 7 weeks following discharge. A 4-day peer training focused on active listening, structuring a call, use of self, boundaries, and facilitating program closure. The curriculum was informed by theories of change, motivational interviewing, and simulation. Peer Volunteers participated in pre-match and post-match interviews with peer researchers (also living with HIV). Thematic analysis was employed by four independent coders to understand how prepared peers were and areas for program improvement. CONCLUSIONS: Peers verified participant feelings and affirmed their experiences, followed-up on participant goals to track progress, disclosed their own relevant experiences to build rapport, and facilitated closure to enable program success. Peers struggled maintaining an emotional connection over the phone and were concerned when participants were nonresponsive. This article discusses how the training was piloted and adapted for practice.
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HIV Infections , Patient Discharge , Community-Based Participatory Research , HIV Infections/therapy , Hospitals , Humans , Peer GroupABSTRACT
BACKGROUND: People living with HIV and multiple comorbidities have high rates of health service use. This study evaluates system usage before and after admission to a community facility focused on HIV care. METHODS: We used Ontario administrative health databases to conduct a pre-post comparison of rates and costs of hospital admissions, emergency department visits, and family physician and home care visits among medically complex people with HIV in the year before and after admission to Casey House, an HIV-specific hospital in Toronto, for all individuals admitted between April 2009 and March 2015. Negative binomial regression was used to compare rates of health care utilization. We used Wilcoxon rank sum tests to compare associated health care costs, standardized to 2015 Canadian dollars. To contextualize our findings, we present rates and costs of health service use among Ontario residents living with HIV. RESULTS: During the study period, 268 people living with HIV were admitted to Casey House. Emergency department use declined from 4.6 to 2.5 visits per person-year (p = 0.02) after discharge from Casey House, and hospitalization rates declined from 1.4 to 1.1 admissions per person-year (p = 0.05). Conversely, home care visits increased from 24.3 to 35.6 visits per person-year (p = 0.01) and family physician visits increased from 18.3 to 22.6 visits per person-year (p < 0.001) in the year after discharge. These changes were associated with reduced overall costs to the health care system. The reduction in overall costs was not significant (p = 0.2); however, costs of emergency department visits (p < 0.001) and physician visits (p < 0.001) were significantly less. INTERPRETATION: Health care utilization by people with HIV was significantly different before and after admission to a community hospital focused on HIV care. This has implications for health care in other complex patient populations.
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HIV Infections , Home Care Services , Hospitals, Community , Hospitals, Special , Multiple Chronic Conditions , Patient Acceptance of Health Care/statistics & numerical data , Female , HIV Infections/economics , HIV Infections/epidemiology , HIV Infections/therapy , Health Care Costs , Home Care Services/economics , Home Care Services/statistics & numerical data , Hospitals, Community/economics , Hospitals, Community/statistics & numerical data , Hospitals, Special/economics , Hospitals, Special/statistics & numerical data , Humans , Male , Middle Aged , Multiple Chronic Conditions/economics , Multiple Chronic Conditions/epidemiology , Multiple Chronic Conditions/therapy , Ontario/epidemiology , Outcome and Process Assessment, Health Care , Patient Discharge/statistics & numerical dataABSTRACT
The needs of people living with HIV (PLWH) who have access to antiretroviral therapy have shifted from hospital to community care; however, little is known about physiotherapy within HIV community-based care. Our aim was to understand strengths and challenges of implementing physiotherapy within an interprofessional HIV day health program in Toronto, Ontario, Canada. We conducted a qualitative descriptive study using semi-structured interviews. Data were analyzed using inductive content analysis. Fifteen PLWH and 5 healthcare providers participated. Strengths included improved access to physiotherapy and fulfilling an unmet need for rehabilitation; a tailored approach to physiotherapy; co-location improved communication, coordination, and engagement in care; and improved health outcomes for PLWH (i.e. function, psychosocial outcomes, and quality of life). Challenges related to managing expectations; variable attendance at visits; and managing complex and diverse needs of PLWH. Results may be transferable to other community-based care settings that provide care for PLWH and complex multi-morbidity.
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Community Health Services/organization & administration , HIV Infections/rehabilitation , Health Services Accessibility , Physical Therapy Modalities , Quality of Life , Female , HIV Infections/psychology , Health Personnel , Humans , Interviews as Topic , Male , Middle Aged , Ontario , Qualitative ResearchABSTRACT
This qualitative longitudinal study examined the experiences of people living with HIV who engaged in a structured community-based exercise (CBE) program under the supervision of a fitness coach. Twenty people living with HIV were invited to participate in 3 semi-structured interviews over time. Participants engaged in exercise 3 times per week for 6 months with one weekly session supervised by a coach. Interviews were audio-recorded, transcribed verbatim and underwent longitudinal thematic analyses. Eleven participants were included representing a total of 30 interviews. Participants valued their experiences with the CBE program, particularly the motivation provided by the coach. Concerns about the environment, stigma and episodic health challenges affected their overall experience. To foster independence and promote self-management, health providers should consider these findings when encouraging CBE with people living with HIV. It is important to understand their goals and offer a variety of exercise options to meet their needs.
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Community Health Services , Exercise Therapy , Exercise/psychology , HIV Infections/therapy , Adult , Canada , Female , HIV Infections/drug therapy , HIV Infections/psychology , Humans , Interviews as Topic , Longitudinal Studies , Male , Middle Aged , Program Evaluation , Qualitative Research , Quality of LifeABSTRACT
OBJECTIVE: To evaluate the construct validity and responsiveness of the Rapid Assessment of Physical Activity (RAPA) for measuring physical activity (PA) in adults living with HIV. DESIGN: Secondary analysis of an interrupted time-series intervention study. SETTING: Community-based fitness facility in Toronto, Canada. PARTICIPANTS: Sixty-seven adults (N=67) living with HIV (n=5 women; mean age, 51.8±11.6 years) with available baseline data to assess for construct validity of the RAPA, of which 50 (n=4 women; age, 53.2±11.4 years) had follow-up data to evaluate responsiveness. INTERVENTIONS: Two months of a community-based exercise intervention involving thrice weekly multicomponent exercises. MAIN OUTCOME MEASURES: We used a single-item PA questionnaire as a convergent outcome to the RAPA, while peak oxygen consumption, general health status, and number of concurrent health conditions were divergent outcomes. We tested 11 a priori hypotheses (6 construct validity, 5 responsiveness) using Spearman ρ, Wilcoxon signed-rank tests, Cohen's d, standardized effect size (SES), and standardized response mean (SRM). We considered acceptable construct validity and responsiveness if >75% of hypotheses were confirmed. RESULTS: All of the hypotheses (100%) for construct validity were confirmed. The RAPA demonstrated moderate correlations with the single-item PA questionnaire (ρ=0.61), and negligible correlations with divergent outcome measures (ρ=0.08-0.21). Two of the 5 hypotheses (40.0%) for responsiveness were confirmed. RAPA scores were significantly greater after 2 months of training (P<.001) and demonstrated a small to moderate effect size (d=0.50, SES=0.47, SRM=0.48). There was a low correlation between change in RAPA scores and change in single-item PA questionnaire scores (ρ=0.48). CONCLUSIONS: The RAPA demonstrated acceptable construct validity and poor responsiveness in adults living with HIV. Therefore, the RAPA can be used cross-sectionally but may be used in conjunction with other measures of PA for adults living with HIV.
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INTRODUCTION: Supervised consumption services (SCS) reduce HIV risks and overdose for people who use drugs (PWUD) and are known to have wide-ranging public health benefits. Feasibility studies are often conducted as part of program/implementation development. We conducted a scoping review of SCS feasibility/pre-implementation studies to answer: what is known about stakeholders' opinions of SCS rules and eligibility criteria? METHODS: Using the PRISMA-ScR guidelines, we searched Medline, PsychINFO, Embase, CINAHL, and SCOPUS databases for: (a) empirical research, (b) reported in English, (c) focused on SCS, (d) pre-implementation feasibility studies (research conducted prior to implementation of SCS in a given context), (e) examining SCS operational rules and eligibility criteria. Abstracts were reviewed to verify appropriateness; full articles/reports were retrieved; data were extracted and charted. RESULTS: Of the 1,268 data sources identified/reviewed, 19 sources, were included. Manuscripts showed the following criteria that might be considered when determining who can and cannot use SCS: age, pregnancy status, and opioid substitution treatment status. To govern behaviours at SCS, manuscripts focused on: acceptable modes of drug consumption, assisted injections, sharing drugs on-site, pill injecting, and mandatory hand washing, etc. Stakeholders generally agreed that; eligibility restrictions and site rules should be minimal to establish low-barrier services. SCS are often forced to contend with the tension between adhering to a medical or public health model and creating low-barrier services. SCS rules are at the center of this intersection because rules and eligibility criteria implemented to mirror other health services may not align with the needs of PWUD. CONCLUSION: Given the public health significance of SCS, establishing best practices for service delivery is critical for increasing access and addressing implementation issues. Future research should examine other operational elements of SCS, such as design elements, staffing models, and ancillary services. Additional research should also focus on supervised smoking services.
Subject(s)
Drug Overdose , Attitude , Confidentiality , Feasibility Studies , Female , Humans , Pregnancy , Program DevelopmentABSTRACT
BACKGROUND: Transitions in care are a high-risk time for patients. Complex patients account for the largest proportion of healthcare costs but experience lower quality and discontinuity of care. The experiences of complex patients can be used to identify gaps in hospital discharge practices and design interventions to improve outcomes. METHODS: We used a case study approach with serial interviews and chart abstraction to explore the hospital discharge and transition experience over 6 weeks. Participants were recruited from a small hospital in Toronto that provides care to complex patients living with human immunodeficiency virus (HIV). Framework analysis was used to compare data across time-points and sources. RESULTS: Data were collected from 9 cases. Participants presented with complex medical and psychosocial challenges, including substance use (n = 9), mental health diagnoses (n = 8) and a mean of 5 medical comorbidities in addition to HIV. Data were analyzed and reported in 4 key themes: 1) social support; 2) discharge process and transition experience; 3) post-discharge follow-up; and 4) patient priorities. After hospital discharge, the complexity of participants' lives resulted in a change in priorities and subsequent divergence from the discharge plan. Despite the comprehensive discharge plans, with referrals designed to support their health and activities of daily living, participants experienced challenges with social support and referral uptake, resulting in a loss of stability achieved while in hospital. CONCLUSION: Further investigation and changes in practice are necessary to ensure that discharge plans for complex patients are realistic within the context of their lives outside of the hospital. Journal of Hospital Medicine 2017;12:5-10.
Subject(s)
Continuity of Patient Care , Longitudinal Studies , Patient Care Planning , Patient Discharge , Qualitative Research , Adult , Female , HIV Infections , Hospitals , Humans , Male , OntarioABSTRACT
This retrospective chart review provides a profile of an emerging population of vulnerable HIV patients with complex comorbidities. Data were abstracted from all 83 patients admitted in 2008 to Casey House, a community-based hospital dedicated to supportive and palliative care for persons with HIV in Toronto, Canada. We describe patient characteristics, including medical and psychiatric conditions, and use a Venn diagram and case study to illustrate the frequency and reality of co-occurring conditions that contribute to the complexity of patients' health and health care needs. The mean age at admission was 49.2 years (SD10.5). Sixty-seven patients (80.7%) were male. Patients experienced a mean of 5.9 medical comorbidities (SD2.3) and 1.9 psychiatric disorders (lifetime Axis I diagnoses). Forty patients (48.2%) experienced cognitive impairment including HIV-associated dementia. Patients were on a mean of 11.5 (SD5.3) medications at admission; 74.7% were on antiretroviral medications with 55.0% reporting full adherence. Current alcohol and drug use was common with 50.6% reporting active use at admission. Our Venn diagram illustrates the breadth of complexity in the clients with 8.4% of clients living in unstable housing with three or more medical comorbidities and two or more psychiatric diagnoses. Comprehensive HIV program planning should include interventions that can flexibly adapt to meet the multidimensional and complex needs of this segment of patients. Researchers, policy-makers, and clinicians need to have greater awareness of overlapping medical, psychiatric and psychosocial comorbidities. Inclusion of the needs of these most vulnerable patients in the development of evidence-based guidelines is an important step for effectively treating, preventing, and planning for the future of HIV/AIDS care.
Subject(s)
AIDS-Related Opportunistic Infections/therapy , Antiretroviral Therapy, Highly Active , HIV Infections/therapy , Mental Disorders/therapy , Patient Acceptance of Health Care , Substance-Related Disorders/therapy , AIDS-Related Opportunistic Infections/epidemiology , AIDS-Related Opportunistic Infections/psychology , Adult , Community Health Services , Comorbidity , Female , HIV Infections/epidemiology , HIV Infections/psychology , Humans , Male , Mental Disorders/epidemiology , Middle Aged , Needs Assessment , Palliative Care/methods , Patient Acceptance of Health Care/psychology , Retrospective Studies , Social Class , Substance-Related Disorders/epidemiology , Substance-Related Disorders/psychologyABSTRACT
OBJECTIVES: To investigate the risk of hospitalization for pneumonia in older adults in relation to biophysical environmental factors. DESIGN: Population-based case control study with collection of personal interview data. SETTING: Hamilton, Ontario, and Edmonton, Alberta, Canada. PARTICIPANTS: Seven hundred seventeen people aged 65 and older hospitalized for community-acquired pneumonia (CAP) from September 2002 to April 2005 and 867 controls aged 65 and older randomly selected from the same communities as the cases. MEASUREMENTS: Odds ratios (ORs) for risk of pneumonia in relation to environmental and other variables. RESULTS: Exposure to secondhand smoke in the previous month (OR=1.73, 95% confidence interval (CI)=1.04-2.90); poor nutritional score (OR=1.83, 95% CI=1.19-2.80); alcohol use per month (per gram; OR=1.69, 95% CI=1.08-2.61); history of regular exposure to gases, fumes, or chemicals at work (OR=3.69, 95% CI=2.37-5.75); history of regular exposure to fumes from solvents, paints, or gasoline at home (OR=3.31, 95% CI=1.59-6.87); and non-English language spoken at home (OR=5.31, 95% CI=2.60-10.87) were associated with a greater risk of pneumonia hospitalization in multivariable analysis. Age, congestive heart failure, chronic obstructive lung disease, dysphagia, renal disease, functional status, use of immunosuppressive disease medications, and lifetime history of smoking of more than 100 cigarettes were other variables associated with hospitalization for pneumonia. CONCLUSION: In elderly people, present and past exposures in the physical environmental are associated with hospitalization for CAP.
Subject(s)
Community-Acquired Infections/therapy , Hospitalization , Pneumonia/therapy , Age Factors , Aged , Alcohol Drinking , Deglutition Disorders/complications , Female , Heart Failure/complications , Humans , Immunosuppressive Agents , Kidney Diseases/complications , Male , Nutritional Status , Occupational Exposure , Pulmonary Disease, Chronic Obstructive/complications , Risk Factors , Tobacco Smoke PollutionABSTRACT
Attaching-effacing lesion-inducing Escherichia albertii and the related, but non-attaching-effacing organism, Hafnia alvei, are both implicated as enteric pathogens in humans. However, effects of these bacteria on epithelial cells are not well-characterized. Related enteropathogens, including enterohemorrhagic Escherichia coli O157:H7, decrease epithelial barrier function by disrupting intercellular tight junctions in polarized epithelia. Therefore, this study assessed epithelial barrier function and tight junction protein distribution in polarized epithelia following bacterial infections. Polarized epithelial (MDCK-I and T84) cells grown on filter supports were infected apically with E. coli O157:H7, E. albertii, and H. alvei for 16h at 37 degrees C. All strains decreased transepithelial electrical resistance and increased permeability to a dextran probe in a host cell-dependent manner. Immunofluorescence microscopy showed that both E. coli O157:H7 and E. albertii, but not H. alvei, caused a redistribution of the tight junction protein zona occludens-1. In contrast to E. coli O157:H7, E. albertii and H. alvei did not redistribute claudin-1. Western blotting of whole cell protein extracts demonstrated that each bacterium caused differential changes in tight junction protein expression, dependent on the host cell. These findings demonstrate that E. albertii and H. alvei are candidate enteric pathogens that have both strain-specific and host epithelial cell-dependent effects.