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1.
J Med Internet Res ; 20(1): e31, 2018 01 26.
Artigo em Inglês | MEDLINE | ID: mdl-29374004

RESUMO

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.


Assuntos
Pessoal de Saúde/psicologia , Multimorbidade/tendências , Visita a Consultório Médico/tendências , Telemedicina/normas , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa
2.
J Health Serv Res Policy ; 29(1): 22-30, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37632271

RESUMO

OBJECTIVES: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. METHODS: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. RESULTS: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. CONCLUSIONS: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.


Assuntos
Artrite , Humanos , Canadá , Motivação
3.
Arthritis Care Res (Hoboken) ; 74(9): 1520-1532, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-33644994

RESUMO

OBJECTIVE: We aimed to broaden understanding of the perspectives of persons with arthritis on their use of wearables to self-monitor physical activity, through a synthesis of evidence from qualitative studies. METHODS: We conducted a systematic search of 5 databases (including Medline, CINAHL, and Embase) from inception to 2018. Eligible studies qualitatively examined the use of wearables from the perspectives of persons with arthritis. All relevant data were extracted and coded inductively in a thematic synthesis. RESULTS: Of 4,358 records retrieved, 7 articles were included. Participants used a wearable during research participation in 3 studies and as part of usual self-management in 2 studies. In remaining studies, participants were shown a prototype they did not use. Themes identified were: 1) the potential to change dynamics in patient-health professional communication: articles reported a common opinion that sharing wearable data could possibly enable patients to improve communication with health professionals; 2) wearable-enabled self-awareness, whether a benefit or downside: there was agreement that wearables could increase self-awareness of physical activity levels, but perspectives were mixed on whether this increased self-awareness motivated more physical activity; 3) designing a wearable for everyday life: participants generally felt that the technology was not obtrusive in their everyday lives, but certain prototypes may possibly embarrass or stigmatize persons with arthritis. CONCLUSION: Themes hint toward an ethical dimension, as participants perceive that their use of wearables may positively or negatively influence their capacity to shape their everyday self-management. We suggest ethical questions pertinent to the use of wearables in arthritis self-management for further exploration.


Assuntos
Artrite , Autogestão , Dispositivos Eletrônicos Vestíveis , Artrite/diagnóstico , Artrite/terapia , Exercício Físico , Humanos , Pesquisa Qualitativa
4.
Arthritis Care Res (Hoboken) ; 71(2): 227-236, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30295430

RESUMO

OBJECTIVE: To compare and contrast the perspectives of patients with arthritis and those of rehabilitation professionals regarding starting and sustaining use of physical activity trackers (PATs). METHODS: We conducted focus group sessions with patients, physiotherapists, and occupational therapists in Ontario, Alberta, or British Columbia, Canada. To be eligible, patients must have self-reported a diagnosis of inflammatory or osteoarthritis. Rehabilitation professionals reported that at least 40% of their caseload was dedicated to arthritis care. Participants had any level of experience with PATs. A thematic analytic approach was used. RESULTS: The following 3 themes were identified: 1) anticipating sharing objective measures of physical activity. Participants agreed that use of PATs had the potential to improve consultations between patients with arthritis and rehabilitation professionals but were uncertain how to achieve this potential; 2) perceived or experienced barriers to start or continue using a PAT. Participants shared doubts about whether existing PATs would meet specific needs of patients with arthritis and expressed concerns about possible negative impacts; and 3) bolstering motivation? Although there was agreement that use of PATs could bolster the motivation of patients who were already active, patients and rehabilitation professionals had different opinions regarding whether use of PATs alone would motivate patients to start increasing activity levels. CONCLUSION: Our study highlights similarities and differences between the perspectives of patients and rehabilitation professionals regarding the potential value and risks of integrating PATs into arthritis self-management. Despite agreement about the potential of PATs, participants were uncertain how to effectively incorporate these tools to enhance patient-clinician consultations and had differing views about whether use of PATs would support a patient's motivation to be active.


Assuntos
Artrite/reabilitação , Exercício Físico/fisiologia , Monitores de Aptidão Física/normas , Fisioterapeutas/normas , Pesquisa Qualitativa , Autogestão/métodos , Adulto , Idoso , Artrite/diagnóstico , Artrite/epidemiologia , Atitude do Pessoal de Saúde , Colúmbia Britânica/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ontário/epidemiologia , Adulto Jovem
5.
Arthritis Care Res (Hoboken) ; 70(3): 343-352, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28544648

RESUMO

OBJECTIVE: To assess the extent to which ANSWER-2, an interactive online patient decision aid, reduces patients' decisional conflict and improves their medication-related knowledge and self-management capacity. METHODS: We used a pre-post study design. Eligible participants had a diagnosis of rheumatoid arthritis (RA), had been recommended to start using a biologic agent or small-molecule agent or to switch to a new one, and had internet access. Access to ANSWER-2 was provided immediately after enrollment. Outcome measures included 1) the Decisional Conflict Scale (DCS), 2) the Medication Education Impact Questionnaire (MeiQ), and 3) the Partners in Health Scale (PIHS). A paired t-test was used to assess differences pre- and postintervention. RESULTS: The majority of the 50 participants were women (n = 40), and the mean ± SD age of participants was 49.6 ± 12.2 years. The median disease duration was 5 years (25th, 75th percentile: 2, 10 years). The mean ± SD DCS score was 45.9 ± 25.1 preintervention and 25.1 ± 21.8 postintervention (mean change of -21.2 of 100 [95% confidence interval (95% CI) -28.1, -14.4], P < 0.001). Before using ANSWER-2, 20% of participants had a DCS score of <25, compared to 52% of participants after the intervention. Similar results were observed in the PIHS (mean ± SD 25.3 ± 14.8 preintervention and 20.4 ± 13.0 postintervention; mean change of -3.7 of 88 [95% CI -6.3, -1.0], P = 0.009). Findings from the MeiQ were mixed, with statistically significant differences found only in the self-management subscales. CONCLUSION: Patients' decisional conflict decreased and perceived self-management capacity improved after using ANSWER-2. Future research comparing the effectiveness of ANSWER-2 with that of educational material on biologic agents will provide further insight into its value in RA management.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Comportamento de Escolha , Técnicas de Apoio para a Decisão , Conhecimentos, Atitudes e Prática em Saúde , Internet , Educação de Pacientes como Assunto/métodos , Adulto , Idoso , Antirreumáticos/efeitos adversos , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/psicologia , Produtos Biológicos/efeitos adversos , Conflito Psicológico , Substituição de Medicamentos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Estudo de Prova de Conceito , Autocuidado , Adulto Jovem
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