Patient Representatives’ Perspectives on Healthcare at the Time of COVID-19 and Suggestions for Care Redesign After the Pandemic: A Qualitative Study in Twenty-Four Countries

Stamm, Tanja; Seidler, Yuki; Andrews, Margaret R; Eghbali, Mohammad; Kiguli, Juliet; Ritschl, Valentin; Omara, Maisa; Schaffer, Gertraud; Mosor, Erika

doi:10.2147/jmdh.s341010

Cited by 5 publications

(4 citation statements)

References 30 publications

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“…Similar findings were observed in another study for challenges with VC in Canada [31]. Patient representatives' perspectives on health care during the pandemic across World Health Organization regions found that telehealth is indispensable in the future but not a solution for everything [32]. Patient representatives were identified as essential connectors and influencers during the pandemic who played an important role in VC implementation.…”

Section: Previous Literaturesupporting

confidence: 80%

Exploring Patient Advisors’ Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study

Braund¹,

Dalgarno²,

Chan-Nguyen³

et al. 2023

J Med Internet Res

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Background While virtual care services existed prior to the emergence of COVID-19, the pandemic catalyzed a rapid transition from in-person to virtual care service delivery across the Canadian health care system. Virtual care includes synchronous or asynchronous delivery of health care services through video visits, telephone visits, or secure messaging. Patient advisors are people with patient and caregiving experiences who collaborate within the health care system to share insights and experiences in order to improve health care. Objective This study aimed to understand patient advisors’ perceptions related to virtual care and potential impacts on health care quality. Methods We adopted a phenomenological approach, whereby we interviewed 20 participants who were patient advisors across Canada using a semistructured interview protocol. The protocol was developed by content experts and medical education researchers. The interviews were audio-recorded, transcribed verbatim, and analyzed thematically. Data collection stopped once thematic saturation was reached. The study was conducted at Queen’s University, Kingston, Ontario. We recruited 20 participants from 5 Canadian provinces (17 female participants and 3 male participants). Results Six themes were identified: (1) characteristics of effective health care, (2) experiences with virtual care, (3) modality preferences, (4) involvement of others, (5) risks associated with virtual care encounters, and (6) vulnerable populations. Participants reported that high-quality health care included building relationships and treating patients holistically. In general, participants described positive experiences with virtual care during the pandemic, including greater efficiency, increased accessibility, and that virtual care was less stressful and more patient centered. Participants comparing virtual care with in-person care reported that time, scheduling, and content of interactions were similar across modalities. However, participants also shared the perception that certain modalities were more appropriate for specific clinical encounters (eg, prescription renewals and follow-up appointments). Perspectives related to the involvement of family members and medical trainees were positive. Potential risks included miscommunication, privacy concerns, and inaccurate patient assessments. All participants agreed that stakeholders should be proactive in applying strategies to support vulnerable patients. Participants also recommended education for patients and providers to improve virtual care delivery. Conclusions Participant-reported experiences of virtual care encounters were relatively positive. Future work could focus on delivering training and resources for providers and patients. While initial experiences are positive, there is a need for ongoing stakeholder engagement and evaluation to improve patient and caregiver experiences with virtual care.

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Section: Previous Literaturesupporting

confidence: 80%

Exploring Patient Advisors’ Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study

Braund¹,

Dalgarno²,

Chan-Nguyen³

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

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“…This is needed to make a significant contribution to a successful health system response. This was supported by Stamm et al (2022), who stated that disadvantaged individuals suffered a level of healthcare disparity never seen before because of a lack of technology to implement telemedicine. Coronavirus disease 2019 stigma varies throughout cultures and countries, especially in the African region with some patients rejecting telehealth when offered (Gcabashe & Matambo 2020).…”

Section: Shift From Traditional Chronic Care To Digital Care Servicesmentioning

confidence: 93%

“…Tiotiu et al ( 2021 ) affirm that few practitioners had a systematic strategy and indicated worries about patients who were already poorly controlled, and there was no transition to digital support that could detect and contact high-risk patients for early follow-up. In addition, Stamm et al ( 2022 ) indicate that previous healthcare disparities for underprivileged people worsen during difficult times. Between 5.6% to 14.6% of participants in a study in Asia experienced worsening NCDs and socioeconomic crises along with decreased access to care (Singh, Kaushik & Johnson 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Strategies that enabled access to chronic care during the COVID-19 pandemic and beyond in South Africa

Mboweni

2024

Health SA Gesondheid

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Background: The COVID-19 epidemic has revealed disturbing information about how chronic diseases are treated globally. Healthcare providers and coronavirus response teams have primarily reported on how individuals with chronic conditions sought care and treatment. However, individuals’ experiences of patients are yet unknown.Aim: This study aimed to explore those strategies that enabled patients with chronic diseases access to chronic care and treatment during and beyond the COVID-19 pandemic.Setting: The study was conducted in the predominantly rural district of the Northwest Province, South Africa.Methods: An explorative qualitative research design was followed. Information-rich participants were chosen using a purposive sampling technique. Individual face-to-face interviews were used to gather data. Data saturation was achieved after interviewing n = 28 people in total. The six steps of Braun and Clarke thematic data analysis were used to analyse the data.Results: The study revealed three themes, which includes improved healthcare structural systems, shift from traditional chronic care to digital care services and medication refill and buddy system.Conclusion: The findings of this study revealed a range of effective and noteworthy approaches that facilitated access to treatment and continuity of care. As a result, enhancing telemedicine as well as structural systems such as appointment scheduling, decanting choices, mobile and medication home delivery can improve access to care and treatment.Contribution: The burden of disease and avoidable death will be eventually addressed by maximising the use of telemedicine and sustaining the new norm of ongoing care through digital and remote care and decanting strategies.

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“…In many countries people have reported reduced access to HIV care during the COVID-19 pandemic [ 22 , 23 ]. HIV care and test facilities were closed down due to healthcare personnel needing to focus on the treatment of patients with COVID-19, making it more difficult for some to access antiretroviral treatment [ 22 , 24 ]. Concerns have also been raised that stigma related to COVID-19 could contribute to layered stigma for people living with HIV [ 23 ].…”

Section: Introductionmentioning

confidence: 99%

COVID-19-related stigma among infected people in Sweden; psychometric properties and levels of stigma in two cohorts as measured by a COVID-19 stigma scale

Reinius,

Svedhem,

Bruchfeld

et al. 2023

PLoS ONE

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Background Epidemics have historically been accompanied by stigma and discrimination. Disease-related stigma has often been shown to have severe consequences for physical, mental and social wellbeing and lead to barriers to diagnosis, treatment and prevention. The aims of this study were to investigate if a HIV-related stigma measure could be adapted and valid and reliable to measure COVID-19-related stigma, and also to investigate levels of self-reported stigma and related factors among people in Sweden with experience of COVID-19 and compare levels of COVID-19-related stigma versus HIV-related stigma among persons living with HIV who had experienced a COVID-19 event. Methods Cognitive interviews (n = 11) and cross-sectional surveys were made after the acute phase of the illness using a new 12-item COVID-19 Stigma Scale and the established 12-item HIV Stigma Scale in two cohorts (people who had experienced COVID-19 (n = 166/209, 79%) and people living with HIV who had experienced a COVID-19 event (n = 50/91, 55%). Psychometric analysis of the COVID-19 Stigma Scale was performed by calculating floor and ceiling effects, Cronbach’s α and exploratory factor analysis. Levels of COVID-19 stigma between groups were analysed using the Mann-Whitney U test. Levels of COVID-19 and HIV stigma among people living with HIV with a COVID-19 event were compared using the Wilcoxon signed-rank test. Results The COVID-19 cohort consisted of 88 (53%) men and 78 (47%) women, mean age 51 (19–80); 143 (87%) living in a higher and 22 (13%) in a lower income area. The HIV + COVID-19 cohort consisted of 34 (68%) men and 16 (32%) women, mean age 51 (26–79); 20 (40%) living in a higher and 30 (60%) in a lower income area. The cognitive interviews showed that the stigma items were easy to understand. Factor analysis suggested a four-factor solution accounting for 77% of the total variance. There were no cross loadings, but two items loaded on factors differing from the original scale. All subscales had acceptable internal consistency, showed high floor and no ceiling effects. There was no statistically significant difference between COVID-19 stigma scores between the two cohorts or between genders. People living in lower income areas reported more negative self-image and concerns about public attitudes related to COVID-19 than people in higher income areas (median score 3 vs 3 and 4 vs 3 on a scale from 3–12, Z = -1.980, p = 0.048 and Z = -2.023, p = 0.024, respectively). People from the HIV + COVID-19 cohort reported more HIV than COVID-19 stigma. Conclusions The adapted 12-item COVID-19 Stigma Scale may be valid and reliable for measurement of COVID-19-related stigma. However, specific items may need to be rephrased or replaced to better correspond to the COVID-19 context. People who had experienced COVID-19 reported low levels of COVID-19-related stigma in general but people from lower income areas had higher levels of negative self-image and concerns about public attitudes related to COVID-19 than people from areas with higher income, which may call for targeted interventions. Although exhibiting more pronounced HIV stigma levels, people living with HIV who had experienced COVID-19 reported COVID-19-related stigma of the same low magnitude as their peers not living with HIV.

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Patient Representatives’ Perspectives on Healthcare at the Time of COVID-19 and Suggestions for Care Redesign After the Pandemic: A Qualitative Study in Twenty-Four Countries

Cited by 5 publications

References 30 publications

Exploring Patient Advisors’ Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study

Exploring Patient Advisors’ Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study

Strategies that enabled access to chronic care during the COVID-19 pandemic and beyond in South Africa

COVID-19-related stigma among infected people in Sweden; psychometric properties and levels of stigma in two cohorts as measured by a COVID-19 stigma scale

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