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OBJECTIVES: To assess a remote physiotherapist (PT) counselling intervention using self-monitoring tools for improving self-management ability, physical activity participation, and health outcomes in people with rheumatoid arthritis (RA). METHODS: Eligible participants were randomly assigned to receive group education, a Fitbit®, a self-monitoring app, and PT counselling phone calls (Immediate Group). The Delayed Group received a monthly e-newsletter until week 26, and then the intervention. The primary outcome was Patient Activation Measure (PAM-13). Participants were assessed at baseline, 27 weeks (the primary end point) and 53 weeks. Secondary outcomes included disease activity, pain, fatigue, depression, sitting/walking habits, daily physical activity time, and daily awake sedentary time. Generalized Linear Mixed-effect Models (GLMMs) were used to assess the effect of the intervention on the change of each outcome measure from the initiation to 27 weeks after the intervention. RESULTS: Analysis included 131 participants (91.6% women; 80.2% completed during the COVID-19 pandemic). The mean change of PAM-13 at 27 weeks was 4.6 (SD = 14.7) in the Immediate Group vs -1.6 (SD = 12.5) in the Delayed Group. The mean change in Delayed Group at 53 weeks (after the 26-week intervention) was 3.6 (SD = 14.6). Overall, the intervention improved PAM-13 at 27 weeks post-intervention from the GLMM analysis (adjusted coefficient: 5.3; 95% CI: 2.0, 8.7; p = <0.001). Favourable intervention effects were also found in disease activity, fatigue, depression, and self-reported walking habit. CONCLUSION: Remote counselling paired with self-monitoring tools improved self-management ability in people with RA. Findings of secondary outcomes indicate that the intervention had a positive effect on symptom management.
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IMPORTANCE: Parenting may influence perceptions of occupational balance (OB), particularly among parents of children with disabilities (PCWD). OBJECTIVE: To compare OB among PCWD and parents of typically developing children (PTDC), identify potential predictors of OB, and examine the association between OB and family quality of life (FQOL). DESIGN: Cross-sectional group-comparison design. SETTING: Two hospitals under the Hamad Medical Corporation, Doha, Qatar. Data were collected between November 2020 and February 2021. PARTICIPANTS: PCWD attending occupational therapy clinics and PTDC from the hospital staff and their relatives were recruited through convenience sampling. Participants were 89 PCWD and 89 PTDC, of whom 38% spoke Arabic, and 62% spoke English. OUTCOMES AND MEASURES: The revised 11-item Occupational Balance Questionnaire and the short version of the Family Quality of Life Survey-2006 were used to measure outcome variables. An investigator-developed demographic survey was used to collect information on independent variables. All data collection forms were available in English and Arabic. The hypothesis was generated before data were collected. RESULTS: Statistically significant but marginal differences were found in OB between PTDC and PCWD (M difference = 1.87, p = .02; 95% confidence interval [0.331, 3.339]). A moderate association existed between OB and FQOL among PCWD (r = .57, p = .001) and PTDC (r = .31, p = .003). CONCLUSIONS AND RELEVANCE: Occupational therapists working with families of young children may find it helpful to assess OB and address OB-related issues to facilitate better FQOL. What This Article Adds: Parenting young children affects OB regardless of the disability status of the child. Role satisfaction and spousal support are possible intervention targets to improve OB and thereby improve FQOL.
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Niños con Discapacidad , Calidad de Vida , Niño , Humanos , Preescolar , Estudios Transversales , Padres , Responsabilidad Parental , Encuestas y CuestionariosRESUMEN
INTRODUCTION: Using wearables to self-monitor physical activity is a promising approach to support arthritis self-management. Little is known, however, about the context in which ethical issues may be experienced when using a wearable in self-management. We used a relational ethics lens to better understand how persons with rheumatoid arthritis (RA) experience their use of a wearable as part of a physical activity counselling intervention study involving a physiotherapist (PT). METHODS: Constructivist grounded theory and a relational ethics lens guided the study design. This conceptual framework drew attention to benefits, downsides and tensions experienced in a context of relational settings (micro and macro) in which participants live. Fourteen initial and eleven follow-up interviews took place with persons with RA in British Columbia, Canada, following participation in a wearable-enabled intervention study. RESULTS: We created three main categories, exploring how experiences of benefits, downsides and tensions when using the intervention intertwined with shared moral values placed on self-control, trustworthiness, independence and productivity: (1) For some, using a wearable helped to 'do something right' by taking more control over reaching physical activity goals. Some, however, felt ambivalent, believing both there was nothing more they could do and that they had not done enough to reach their goal; (2) Some participants described how sharing wearable data supported and challenged mutual trustworthiness in their relationship with the PT; (3) For some, using a wearable affirmed or challenged their sense of self-respect as an independent and productive person. CONCLUSION: Participants in this study reported that using a wearable could support and challenge their arthritis self-management. Constructing moral identity, with qualities of self-control, trustworthiness, independence and productivity, within the relational settings in which participants live, was integral to ethical issues encountered. This study is a key step to advance understanding of ethical issues of using a wearable as an adjunct for engaging in physical activity from a patient's perspective. PATIENT OR PUBLIC CONTRIBUTION: Perspectives of persons with arthritis (mostly members of Arthritis Research Canada's Arthritis Patient Advisory Board) were sought to shape the research question and interpretations throughout data analysis.
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Artritis Reumatoide , Dispositivos Electrónicos Vestibles , Artritis Reumatoide/terapia , Colombia Británica , Ejercicio Físico , Teoría Fundamentada , HumanosRESUMEN
OBJECTIVES: This study aimed to explore the impact of the coronavirus disease 2019 (COVID-19) pandemic on self-care of individuals living with rheumatoid arthritis (RA). METHODS: Guided by a constructivist, qualitative design, we conducted one-to-one in-depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized-controlled trials. An inductive, reflexive thematic analysis approach was used. RESULTS: Twenty-six participants (aged 27-73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self-care describes how participants took measures to continue self-care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self-care. (2) Managing emotions describes resilience-building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. CONCLUSION: The insights gained may inform clinicians and researchers on ways to support the self-care strategies of individuals with RA and other chronic illnesses during and after the COVID-19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. PATIENT OR PUBLIC CONTRIBUTION: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.
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Artritis Reumatoide , COVID-19 , Adulto , Anciano , Artritis Reumatoide/psicología , Artritis Reumatoide/terapia , Colombia Británica , COVID-19/epidemiología , Femenino , Humanos , Persona de Mediana Edad , Pandemias , Investigación Cualitativa , AutocuidadoRESUMEN
STUDY DESIGN: Mixed-methods. OBJECTIVES: (1) To explore psychosocial and quality of life outcomes between those injured early versus later in life, and (2) to explore their post-injury experiences. SETTING: GF Strong Rehabilitation Centre, Vancouver, Canada. METHODS: For this community-based study, we recruited individuals with SCI (>55 years of age) who were either injured between the ages of 15-30 (n = 15) or after the age of 50 (n = 15). We collected quantitative data about participants' sociodemographics and participants completed standardised questionnaires assessing personal factors, environmental factors, life habits, and quality of life. An independent samples t test was performed for continuous variables and the Chi-square test was conducted for the categorical variables. Qualitative data were collected via semi-structured interviews. Thematic content analysis was performed on the interview transcripts. RESULTS: We found no statistically significant differences between the two groups on any of the psychosocial outcomes. However, those injured later in life were significantly more likely to be female, have a higher income, and live in residential care. We identified three main qualitative themes that were consistent across the two groups: 'dealing with health and changes in occupation', 'enacting interdependence', and 'living in the community'. Some sub-themes varied between groups. CONCLUSIONS: To facilitate better rehabilitation, clinicians need to be aware of disparities among people with SCI relating to age of injury. Across age cohorts, it is important to increase independence, provide greater support when entering or returning to the workforce, and reduce societal stigma.
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Traumatismos de la Médula Espinal , Adolescente , Adulto , Canadá , Femenino , Humanos , Masculino , Investigación Cualitativa , Calidad de Vida , Traumatismos de la Médula Espinal/rehabilitación , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Purpose There is an absence of evidence-based guidance to support workplace stakeholders in the effective delivery of return-to-work (RTW) messages. Our study examines the specific RTW communication practices and their impact on the management of work disability. Methods Within two large and complex healthcare organizations, semi-structured interviews were conducted with workplace stakeholders (e.g., supervisors, union representatives, disability management professionals and workers' compensation representatives) and workers who had previously experienced sickness absence related to an occupational injury or illness. For workplace stakeholders interview questions asked about their roles and responsibilities in the RTW process, and specific communication strategies and messages that were used at different phases of the RTW process. For worker participants, interview questions explored RTW experiences and the impact of communication on work re-integration. An interpretative descriptive approach was used to inductively examine themes from interviews to create ways of understanding phenomena that yielded applied findings. Results Forty participants were interviewed including workplace stakeholders and workers. Participants frequently described effective RTW communication as messages that were delivered by a workplace stakeholder that included the content required by an injured worker to navigate the organizational disability management process and utilized specific strategies to address the perceived attitudes and perceptions held by an injured worker regarding work re-integration. Workplace stakeholders described five specific communication strategies including relaying messages of support, optimizing the timing of communication, careful word choice, framing messages, and tailoring communication to the injured worker. Conclusion RTW communication is an active process that requires a strategic approach. Effective communication practices represent an important strategy for workplace stakeholders to address the barriers held by injured workers and foster early and sustained RTW.
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Traumatismos Ocupacionales , Reinserción al Trabajo , Comunicación , Humanos , Indemnización para Trabajadores , Lugar de TrabajoRESUMEN
IMPORTANCE: What occupational science (OS) knowledge may be essential to occupational therapy practice has not been systematically explored. OBJECTIVE: To identify and gain expert consensus on OS concepts viewed as essential to occupational therapy practice. DESIGN: A complex, convergent mixed-methods Delphi design with an international panel of OS experts randomly assigned to two parallel groups. In Round 1, each group generated OS concepts; in Rounds 2 and 3, they rated the degree to which each concept was essential to occupational therapy. Data were analyzed separately for each group. A fourth round combined the two groups and used carefully merged concept definitions from both groups to validate consensus on essential concepts arising from the prior rounds. PARTICIPANTS: Fifty-two nominated experts from 22 countries who met a priori criteria participated in the 14-mo study. RESULTS: Of 62 experts invited, 52 (Group A = 24, Group B = 28) participated in the first round, and 42 (81%) completed the full-group final round. Eleven concepts met the consensus threshold (≥70%) established for the study. Additional analysis compared parallel- and full-group results to carefully discern conceptual similarities and differences, especially with near-consensus concepts. CONCLUSIONS AND RELEVANCE: Substantial expert agreement was established for several OS concepts viewed as essential, providing a basis for future studies to refine the concepts for occupational therapy education and practice. What This Article Adds: The results of this research provide a systematically derived preliminary basis for selecting OS content for occupational therapy educational programs and preliminary concepts for organizing OS knowledge germane to occupational therapy practice.
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Terapia Ocupacional , Consenso , Técnica Delphi , Humanos , OcupacionesRESUMEN
BACKGROUND: Therapeutic interventions for people with inflammatory arthritis (IA) increasingly involve multidisciplinary teams and strive to foster patient-centred care and shared decision making. Participation in health-care decisions requires patients to assert themselves and negotiate power in encounters with clinicians; however, clinical contexts often afford less authority for patients than clinicians. This disadvantage may inhibit patients' involvement in their own health care. OBJECTIVE: To identify communication attributes, IA patients use to influence and negotiate their treatment with members of their health-care network. METHOD: A qualitative social network approach was used to analyse data from a larger study that investigated IA patients' overall experiences of multidisciplinary care. Fourteen patients with IA attended individual semi-structured interviews. Researchers used thematic analysis to identify patterns of assertiveness and influence in the data. RESULTS: Participants experienced loss of identity, control and agency in addition to the physical symptoms of IA. However, they had a sense of personal responsibility for managing their health care. Perceptions of health-care team support enhanced patients' influence in treatment negotiations. Notably, there appeared to be an underlying tension between being empowered or disempowered. DISCUSSION AND CONCLUSIONS: The findings have significant implications for treatment decision communication approaches to IA care. A social network perspective may provide a pathway for clinicians to better understand the complexities of communication with their patients. This approach may reduce unequal power dynamics that occur within clinician/patient interactions and afford people with IA agency, control and affirmation of identity within their health-care network.
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Artritis , Comunicación , Artritis/terapia , Toma de Decisiones Conjunta , Humanos , Participación del Paciente , Investigación Cualitativa , Red SocialRESUMEN
BACKGROUND: Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. OBJECTIVE: To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. METHODS: We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. RESULTS: Participants' experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team. CONCLUSIONS: The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research.
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Participación de la Comunidad , Participación del Paciente , Proyectos de Investigación , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , InvestigadoresRESUMEN
BACKGROUND: eHealth is a broad term referring to the application of information and communication technologies in the health sector, ranging from health records to telemedicine and multiple forms of health education and digital tools. By providing increased and anytime access to information, opportunities to exchange experiences with others, and self-management support, eHealth has been heralded as transformational. It has created a group of informed, engaged, and empowered patients as partners, equipped to take part in shared decision making and effectively self-manage chronic illness. Less attention has been given to health care professionals' (HCPs) experiences of the role of eHealth in patient encounters. OBJECTIVE: The objective of this study was to examine HCPs' perspectives on how eHealth affects their relationships with patients living with multiple chronic conditions, as well as its ethical and practical ramifications. METHODS: We interviewed HCPs about their experiences with eHealth and its impact on the office visit. Eligible participants needed to report a caseload of ≥25% of patients with multimorbidity to address issues of managing complex chronic conditions and coordination of care. We used a semistructured discussion guide for in-depth interviews, and follow-up interviews served to clarify and expand upon initial discussions. Constant comparisons and a narrative approach guided the analyses, and a relational ethics conceptual lens was applied to the data to identify emergent themes. RESULTS: A total of 12 physicians and nurses (6 male, 6 female; median years of practice=13) participated. eHealth tools most frequently described were Web-based educational resources for patients and Web-based resources for HCPs such as curated scientific summaries on diagnostic criteria, clinical therapies, and dosage calculators. Analysis centered on a grand theme of the two-way conversation between HCPs and patients, which addresses a general recentering of the ethical relationship between HCPs and patients around engagement. Subthemes explain the evolution of the two-way conversation, and having, using, and supporting the two-way conversation with patients, primarily as this relates to achieving adherence and health outcomes. CONCLUSIONS: Emerging ethical concerns were related to the ambiguity of the ideal of empowered patients and the ways in which health professionals described enacting those ideals in practice, showing how the cultural shift toward truly mutually respectful and collaborative practice is in transition. HCPs aim to act in the best interests of their patients; the challenge is to benefit from emergent technologies that may enhance patient-HCP interactions and effective care, while abiding by regulations, dealing with the strictures of the technology itself, and managing changing demands on their time.
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Personal de Salud/psicología , Multimorbilidad/tendencias , Visita a Consultorio Médico/tendencias , Telemedicina/normas , Femenino , Humanos , Entrevistas como Asunto , Masculino , Investigación CualitativaRESUMEN
We developed a reporting guideline to provide authors with guidance about what should be reported when writing a paper for publication in a scientific journal using a particular type of research design: the single-case experimental design. This report describes the methods used to develop the Single-Case Reporting guideline In BEhavioural interventions (SCRIBE) 2016. As a result of 2 online surveys and a 2-day meeting of experts, the SCRIBE 2016 checklist was developed, which is a set of 26 items that authors need to address when writing about single-case research. This article complements the more detailed SCRIBE 2016 Explanation and Elaboration article (Tate et al., 2016 ) that provides a rationale for each of the items and examples of adequate reporting from the literature. Both these resources will assist authors to prepare reports of single-case research with clarity, completeness, accuracy, and transparency. They will also provide journal reviewers and editors with a practical checklist against which such reports may be critically evaluated. We recommend that the SCRIBE 2016 is used by authors preparing manuscripts describing single-case research for publication, as well as journal reviewers and editors who are evaluating such manuscripts. SCIENTIFIC ABSTRACT Reporting guidelines, such as the Consolidated Standards of Reporting Trials (CONSORT) Statement, improve the reporting of research in the medical literature (Turner et al., 2012 ). Many such guidelines exist and the CONSORT Extension to Nonpharmacological Trials (Boutron et al., 2008 ) provides suitable guidance for reporting between-groups intervention studies in the behavioural sciences. The CONSORT Extension for N-of-1 Trials (CENT 2015) was developed for multiple crossover trials with single individuals in the medical sciences (Shamseer et al., 2015 ; Vohra et al., 2015 ), but there is no reporting guideline in the CONSORT tradition for single-case research used in the behavioural sciences. We developed the Single-Case Reporting guideline In BEhavioural interventions (SCRIBE) 2016 to meet this need. This Statement article describes the methodology of the development of the SCRIBE 2016, along with the outcome of 2 Delphi surveys and a consensus meeting of experts. We present the resulting 26-item SCRIBE 2016 checklist. The article complements the more detailed SCRIBE 2016 Explanation and Elaboration article (Tate et al., 2016 ) that provides a rationale for each of the items and examples of adequate reporting from the literature. Both these resources will assist authors to prepare reports of single-case research with clarity, completeness, accuracy, and transparency. They will also provide journal reviewers and editors with a practical checklist against which such reports may be critically evaluated.
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Terapia Conductista , Lista de Verificación , Guías como Asunto , Edición , Proyectos de Investigación , Informe de Investigación/normas , Humanos , Revisión de la Investigación por Pares/normasRESUMEN
Reporting guidelines, such as the Consolidated Standards of Reporting Trials (CONSORT) Statement, improve the reporting of research in the medical literature (Turner et al., 2012). Many such guidelines exist, and the CONSORT Extension to Nonpharmacological Trials (Boutron et al., 2008) provides suitable guidance for reporting between-groups intervention studies in the behavioral sciences. The CONSORT Extension for N-of-1 Trials (CENT 2015) was developed for multiple crossover trials with single individuals in the medical sciences (Shamseer et al., 2015; Vohra et al., 2015), but there is no reporting guideline in the CONSORT tradition for single-case research used in the behavioral sciences. We developed the Single-Case Reporting guideline In Behavioral interventions (SCRIBE) 2016 to meet this need. This Statement article describes the methodology of the development of the SCRIBE 2016, along with the outcome of 2 Delphi surveys and a consensus meeting of experts. We present the resulting 26-item SCRIBE 2016 checklist. The article complements the more detailed SCRIBE 2016 Explanation and Elaboration article (Tate et al., 2016) that provides a rationale for each of the items and examples of adequate reporting from the literature. Both these resources will assist authors to prepare reports of single-case research with clarity, completeness, accuracy, and transparency. They will also provide journal reviewers and editors with a practical checklist against which such reports may be critically evaluated.
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Ciencias de la Conducta/métodos , Lista de Verificación , Guías como Asunto , Edición/normas , Proyectos de Investigación , Informe de Investigación/normas , Técnica Delphi , HumanosRESUMEN
BACKGROUND: The rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient-health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support. OBJECTIVE: In this paper, we focus on patients' and HCPs' use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information. METHODS: We purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data. RESULTS: We recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs. CONCLUSIONS: Relational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs.
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Artritis , Información de Salud al Consumidor/estadística & datos numéricos , Internet , Participación del Paciente , Relaciones Profesional-Paciente/ética , Telemedicina/ética , Adulto , Anciano , Colombia Británica , Canadá , Enfermedad Crónica , Comorbilidad , Femenino , Grupos Focales , Teoría Fundamentada , Personal de Salud , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Terapia Ocupacional , Fisioterapeutas , Investigación Cualitativa , Reumatología , Autoinforme , Confianza , IncertidumbreRESUMEN
BACKGROUND: Arthritis and musculoskeletal conditions are the leading cause of long-term work disability (WD), an outcome with a major impact on quality of life and a high cost to society. The importance of decreased at-work productivity has also recently been recognized. Despite the importance of these problems, few interventions have been developed to reduce the impact of arthritis on employment. We have developed a novel intervention called "Making It Work", a program to help people with inflammatory arthritis (IA) deal with employment issues, prevent WD and improve at-work productivity. After favorable results in a proof-of-concept study, we converted the program to a web-based format for broader dissemination and improved accessibility. The objectives of this study are: 1) to evaluate in a randomized controlled trial (RCT) the effectiveness of the program at preventing work cessation and improving at-work productivity; 2) to perform a cost-utility analysis of the intervention. METHODS/DESIGN: 526 participants with IA will be recruited from British Columbia, Alberta, and Ontario in Canada. The intervention consists of a) 5 online group sessions; b) 5 web-based e-learning modules; c) consultations with an occupational therapist for an ergonomic work assessment and a vocational rehabilitation counselor. Questionnaires will be administered online at baseline and every 6 months to collect information about demographics, disease measures, costs, work-related risk factors for WD, quality of life, and work outcomes. Primary outcomes include at-work productivity and time to work cessation of > 6 months for any reason. Secondary outcomes include temporary work cessation, number of days missed from work per year, reduction in hours worked per week, quality adjusted life year for the cost utility analysis, and changes from baseline in employment risk factors. Analysis of Variance will evaluate the intervention's effect on at-work productivity, and multivariable Cox regression models will estimate the risk of work cessation associated with the intervention after controlling for risk factors for WD and other important predictors imbalanced at baseline. DISCUSSION: This program fills an important gap in arthritis health services and addresses an important and costly problem. Knowledge gained from the RCT will be useful to health care professionals, policy planners and arthritis stakeholders. TRIAL REGISTRATION: ClinicalTrials.gov NCT01852851; registered April 13, 2012; first participant randomized on July 6, 2013.
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Artritis/rehabilitación , Protocolos Clínicos , Empleo/normas , Evaluación de Programas y Proyectos de Salud , Adulto , Humanos , Persona de Mediana Edad , Desarrollo de ProgramaRESUMEN
PURPOSE: To examine men and women's perceptions of inter-role balance/imbalance in work, arthritis, and personal roles and its association with demographic, health and employment factors, including job stress, career satisfaction, job disruptions, absenteeism and perceived productivity losses. METHODS: Participants were employed, aged ≥40 years and diagnosed with osteoarthritis or inflammatory arthritis. They were recruited through community advertising and rheumatology clinics in two Canadian provinces. Respondents completed a 35-45 min telephone interview and a 20-min self-administered questionnaire assessing role perceptions [(arthritis negatively impacts work (A â W); work/personal life negatively impact arthritis (W/P â A); work as a positive role (W +))], demographic, health and work context information. Analyses included exploratory factor analysis and multivariate regressions. RESULTS: Findings revealed similarities between men (n = 104) and women (n = 248) in health, work and role perceptions, although women reported more benefits of working with arthritis (W+) than men. Some gender differences were found in factors associated with inter-role perceptions highlighting the importance of children, fatigue, unpredictable work hours, job control, and workplace activity limitations. Role perceptions were associated with work outcomes but only one perception, W/P â A, interacted with gender. Among men, greater perceptions that work and personal demands interfered with managing arthritis were associated with more job disruptions. CONCLUSIONS: This study revealed negative and positive inter-role perceptions related to working with a chronic illness and associations with work outcomes. It highlights potentially modifiable factors that could assess risk and inform interventions to improve role balance and working experiences.
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Artritis/epidemiología , Artritis/psicología , Empleo/psicología , Adulto , Colombia Británica/epidemiología , Conflicto Psicológico , Fatiga/epidemiología , Fatiga/psicología , Femenino , Humanos , Control Interno-Externo , Satisfacción en el Trabajo , Masculino , Persona de Mediana Edad , Ontario/epidemiología , Admisión y Programación de Personal , Rol , Factores Sexuales , Estrés Psicológico/epidemiología , Encuestas y Cuestionarios , Tolerancia al Trabajo Programado/fisiología , Tolerancia al Trabajo Programado/psicologíaRESUMEN
OBJECTIVE: To determine the impact of occupational therapy (OT) on the self-management of function, pain, fatigue, and lived experience for people living with rheumatoid arthritis (RA). METHODS: Five databases and gray literature were searched up to June 30, 2022. Three reviewers screened titles and abstracts, with two independently extracting and assessing full texts using the Cochrane risk of bias (quantitative) and Critical Appraisal Skills Programme (qualitative) tools to assess study quality. Studies were categorized into four intervention types. Grading of Recommendations, Assessment, Development and Evaluations (GRADE) (quantitative) and GRADE- Confidence in Evidence from Reviews of Qualitative research (qualitative) were used to assess the quality of evidence for each intervention type. RESULTS: Of 39 eligible papers, 29 were quantitative (n = 2,029), 4 qualitative (n = 50), and 6 mixed methods (n = 896). Good evidence supports patient education and behavior change programs for improving pain and function, particularly group sessions of joint protection education, but these do not translate to long-term improvements for RA (>24 months). Comprehensive OT had mixed evidence (limited to home OT and an arthritis gloves program), whereas limited evidence was available for qualitative insights, splints and assistive devices, and self-management for fatigue. CONCLUSION: Although patient education is promising for self-managing RA, no strong evidence was found to support OT programs for self-managing fatigue or patient experience and long-term effectiveness. More research is required on lived experience, and the long-term efficacy of self-management approaches incorporating OT, particularly timing programs to meet the individual's conditional needs (i.e., early or established RA) to build on the few studies to date.
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OBJECTIVE: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. METHODS: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. RESULTS: Thirty-nine participants (aged 26-86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) "upholding moral values of togetherness" because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) "relational autonomy-supports and challenges," because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) "differing trust in information sources," in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. CONCLUSION: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic.
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Artritis Reumatoide , COVID-19 , Femenino , Humanos , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/terapia , Artritis Reumatoide/psicología , Colombia Británica , COVID-19/prevención & control , Pandemias , Salud Pública , Autocuidado , Masculino , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
OBJECTIVE: To examine the relation between frequency of participation and confidence with using a manual wheelchair among community-living, older wheelchair users, and the moderating effect of sex. DESIGN: Cross-sectional. SETTING: Community. PARTICIPANTS: Participants (N=54) who were community-living manual wheelchair users (65% men), were ≥50 years of age (mean, 59y), used their wheelchair daily, and had ≥6 months experience using a wheelchair. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The 16-item Late Life Disability Instrument and the 65-item Wheelchair Use Confidence Scale measured participation and confidence, respectively. Age, sex, and wheelchair skill measured using the performance-based Wheelchair Skills Test were included as covariates in the multiple regression models. RESULTS: Significant and positive relations exist between participation and (1) confidence (ß=.83, P=.002) and (2) interaction term (ß=.33, P=.05). The R(2) change associated with confidence was 10% (P=.02), and 6% (P=.05) for the interaction term. Subsequent regression analyses revealed that the magnitude of the relation between higher confidence and greater participation is stronger for men (ß=1.05, P=.002) than for women (ß=.44, P=.05). CONCLUSIONS: Confidence with using a manual wheelchair is a positive and significant determinant of frequency of participation of older wheelchair users, after controlling for important covariates. Because the relation is moderated by sex, treatments addressing low confidence may lead to increased frequency of participation, especially for wheelchair users who are men.
Asunto(s)
Personas con Discapacidad/psicología , Actividad Motora/fisiología , Participación del Paciente/psicología , Autoimagen , Participación Social/psicología , Silla de Ruedas , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Análisis y Desempeño de TareasRESUMEN
BACKGROUND: Decision aids are evidence-based tools designed to inform people of the potential benefit and harm of treatment options, clarify their preferences and provide a shared decision-making structure for discussion at a clinic visit. For patients with rheumatoid arthritis (RA) who are considering methotrexate, we have developed a web-based patient decision aid called the ANSWER (Animated, Self-serve, Web-based Research Tool). This study aimed to: 1) assess the usability of the ANSWER prototype; 2) identify strengths and limitations of the ANSWER from the patient's perspective. METHODS: The ANSWER prototype consisted of: 1) six animated patient stories and narrated information on the evidence of methotrexate for RA; 2) interactive questionnaires to clarify patients' treatment preferences. Eligible participants for the usability test were patients with RA who had been prescribed methotrexate. They were asked to verbalize their thoughts (i.e., think aloud) while using the ANSWER, and to complete the System Usability Scale (SUS) to assess overall usability (range = 0-100; higher = more user friendly). Participants were audiotaped and observed, and field notes were taken. The testing continued until no new modifiable issues were found. We used descriptive statistics to summarize participant characteristics and the SUS scores. Content analysis was used to identified usability issues and navigation problems. RESULTS: 15 patients participated in the usability testing. The majority were aged 50 or over and were university/college graduates (n = 8, 53.4%). On average they took 56 minutes (SD = 34.8) to complete the tool. The mean SUS score was 81.2 (SD = 13.5). Content analysis of audiotapes and field notes revealed four categories of modifiable usability issues: 1) information delivery (i.e., clarity of the information and presentation style); 2) navigation control (i.e., difficulties in recognizing and using the navigation control buttons); 3) layout (i.e., position of the videos, text, diagrams and navigation buttons); 4) aesthetic (i.e., the colour, look and feel of the online tool). CONCLUSIONS: Although the SUS score indicated high usability before and after major modification, findings from the think-aloud sessions illustrated areas that required further refinement. Our results highlight the importance of formative evaluation in usability testing.
Asunto(s)
Artritis Reumatoide/tratamiento farmacológico , Técnicas de Apoyo para la Decisión , Educación del Paciente como Asunto/normas , Satisfacción del Paciente , Interfaz Usuario-Computador , Adulto , Anciano , Artritis Reumatoide/psicología , Femenino , Humanos , Internet/estadística & datos numéricos , Masculino , Metotrexato , Persona de Mediana EdadRESUMEN
BACKGROUND: Occupational therapists can support people with rheumatoid arthritis to self-manage their disease symptoms and engage in daily activities. This protocol reports a review to broaden understanding of what is known about the role of occupational therapy in the self-management of rheumatoid arthritis. METHODS: Studies involving adults with rheumatoid arthritis, having participated in self-management involving occupational therapy, will be included. Patient involvement will help develop the search strategy by identifying patient-centred interventions and outcomes to complement those identified by researchers. An electronic search will be performed using several bibliographic databases, including grey literature from subject-specific, health-related, and social care databases. Searches will run from the database inception until the date that the search is conducted (December 2021-May 2022). Retrieved studies will be de-duplicated, and the remaining titles and abstracts will be screened by three reviewers. Full texts of all eligible studies will be independently reviewed by the reviewers to select papers for data extraction and quality assessment. Outcomes are function, pain, fatigue and lived experience. For quantitative studies, data will be synthesised using descriptive statistics in text and tables, whereas for qualitative studies, data will be synthesised using thematic synthesis. DISCUSSION: This review will synthesise current evidence on how occupational therapy can help the self-management of rheumatoid arthritis. It will include evidence of best practice, including advice, education and training provided by occupational therapists. These findings can inform future research and the selection of strategies to promote quality of life for people with rheumatoid arthritis. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42022302205.