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1.
Transl Behav Med ; 13(7): 442-452, 2023 Jul 01.
Article in English | MEDLINE | ID: covidwho-2287113

ABSTRACT

The SPIN-CHAT Program was designed to support mental health among individuals with systemic sclerosis (SSc; commonly known as scleroderma) and at least mild anxiety symptoms at the onset of COVID-19. The program was formally evaluated in the SPIN-CHAT Trial. Little is known about program and trial acceptability, and factors impacting implementation from the perspectives of research team members and trial participants. Thus, the propose of this follow-up study was to explore research team members' and trial participants' experiences with the program and trial to identify factors impacting acceptability and successful implementation. Data were collected cross-sectionally through one-on-one, videoconference-based, semi-structured interviews with 22 research team members and 30 purposefully recruited trial participants (Mage = 54.9, SD = 13.0 years). A social constructivist paradigm was adopted, and data were analyzed thematically. Data were organized into seven themes: (i) getting started: the importance of prolonged engagement and exceeding expectations; (ii) designing the program and trial: including multiple features; (iii) training: research team members are critical to positive program and trial experiences; (iv) offering the program and trial: it needs to be flexible and patient-oriented; (v) maximizing engagement: navigating and managing group dynamics; (vi) delivering a videoconference-based supportive care intervention: necessary, appreciated, and associated with some barriers; and (vii) refining the program and trial: considering modification when offered beyond the period of COVID-19 restrictions. Trial participants were satisfied with and found the SPIN-CHAT Program and Trial to be acceptable. Results offer implementation data that can guide the design, development, and refinement of other supportive care programs seeking to promote psychological health during and beyond COVID-19.


The Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program, a videoconference-based supportive care program, was designed to protect and enhance mental health in individuals affected by systemic sclerosis (commonly known as scleroderma) with at least mild anxiety symptoms during the COVID-19 pandemic. A trial was conducted to evaluate the SPIN-CHAT Program, and results were generally positive. However, important gaps in knowledge remained. Specifically, research team members' and participants' perceptions of SPIN-CHAT Trial acceptability (including satisfaction) and factors impacting implementation of the SPIN-CHAT Program had not yet been explored. To fill this gap, we conducted one-on-one, videoconference-based, semi-structured interviewed with 22 research team members and 30 purposefully recruited trial participants. Interviews sought to gain insights into research team members' and trial participants' experiences within the SPIN-CHAT Program, delivery preferences, and aspects that were/were not beneficial. Findings suggest research team members and participants valued the SPIN-CHAT Program and found the trial to be acceptable. Results also highlight important factors to consider when designing, developing, and/or refining videoconference-based supportive care programs.


Subject(s)
COVID-19 , Scleroderma, Systemic , Humans , Follow-Up Studies , Qualitative Research , Scleroderma, Systemic/therapy , Videoconferencing
2.
J Adolesc Health ; 2022 Oct 03.
Article in English | MEDLINE | ID: covidwho-2285772

ABSTRACT

PURPOSE: Global studies show an increase in hospitalizations for pediatric eating disorders (EDs). No published Canadian studies have confirmed these findings in pediatric ED programs for one-year post onset of the COVID-19 pandemic. The primary objective was to examine health administrative data from two pediatric tertiary care ED programs: Alberta Children's Hospital (ACH) and Hospital for Sick Children (SickKids) to determine the number of pediatric hospitalizations with the most responsible discharge diagnosis of anorexia nervosa (AN). METHODS: This hospital-based design explored monthly pediatric hospitalizations in seven-year-olds to 18-year-olds between March 11, 2014 and March 11, 2021 using the Discharge Abstract databases. The analysis used negative binomial regression with robust standard errors to compare hospitalization counts in the months preceding and following the World Health Organization pandemic declaration (March 11, 2020). RESULTS: Hospitalizations due to pediatric AN increased by 63% and 132% at SickKids (p < .001) and ACH (p < .001), respectively, in the first year of the pandemic compared to the previous six years. The total number of non-ED hospitalizations decreased by 29.3% and 2.4% at SickKids and ACH, respectively. DISCUSSION: This is the first Canadian study to show a rise in pediatric hospitalizations over one year due to AN in two tertiary care hospitals following the onset of the pandemic, confirming the impact that the pandemic has had on children and adolescents with AN in Canada.

4.
Int J Eat Disord ; 2022 Apr 05.
Article in English | MEDLINE | ID: covidwho-2229452

ABSTRACT

OBJECTIVE: A growing body of evidence suggests that individuals with eating disorders (EDs) have experienced deteriorating symptoms, increased isolation, and an increase in hospital admissions as a result of the COVID-19 pandemic. Despite this, no systematic reviews have been conducted examining the COVID-19 and ED peer-reviewed literature. Therefore, this systematic review aimed to synthesize the impact of the COVID-19 pandemic on individuals with EDs. METHOD: Database searches of the peer-reviewed literature were completed in the subsequent databases: CINAHL, Embase, MEDLINE, and PsycINFO (from November 2019 to October 20, 2021). All research reporting on the relationship between the COVID-19 pandemic on individuals with EDs were included. RESULTS: Fifty-three studies met the inclusion criteria, including 36,485 individuals with EDs. The pooled hospital admissions across the studies demonstrated on average a 48% (pre = 591, post = 876, n = 10 studies) increase in admissions during the pandemic compared to previous pre-pandemic timepoints. In this review, 36% of studies (n = 19) documented increases in eating disorder symptoms during the pandemic, this increase in eating disorder symptoms were documented in AN, BED, BN, and OFSED patients. Studies also demonstrated increases in anxiety (n = 9) and depression (n = 8), however patterns of change appeared to be diagnostic and timing specific (e.g., lockdowns). DISCUSSION: We found a large increase in the number of hospitalizations and an increase in ED symptoms, anxiety, depression, and changes to BMI in ED patients during the pandemic. However, these changes appeared to be diagnostic and timing specific. Many qualitative studies described deterioration in ED symptomatology due to decreased access to care and treatment, changes to routine and loss of structure, negative influence of the media, and social isolation. Future studies are needed to focus on pediatric populations, new ED diagnoses, and severity of illness at presentation. PUBLIC SIGNIFICANCE: The scientific literature suggests that individuals with eating disorders have experienced deteriorating symptoms, increased isolation, and an increase in hospital admissions as a result of the COVID-19 pandemic. This study synthesized 53 articles and explored the impact of the COVID-19 pandemic on patients with eating disorders. We found increases in eating disorder symptoms during the pandemic; this increase in eating disorder symptoms was documented in patients with common eating disorders including anorexia nervosa, binge-eating disorder, bulimia nervosa, and other specified feeding and eating disorders. This review also demonstrated changes in body mass index (an index used to classify underweight, overweight, and obesity in adults) and increases in anxiety and depression during the pandemic compared to previous timepoints; patterns of change appeared to be related to timing of lockdowns. This review provides important information on the impact of COVID-19 on the physical and mental health of individuals with eating disorders.


OBJETIVO: Un creciente conjunto de evidencia sugiere que las personas con trastornos de la conducta alimentaria (TCA) han experimentado síntomas de deterioro, mayor aislamiento y un aumento en los ingresos hospitalarios como resultado de la pandemia de COVID-19. A pesar de esto, no se han realizado revisiones sistemáticas que examinen la literatura revisada por pares de COVID-19 y TCA. Por lo tanto, esta revisión sistemática tuvo como objetivo sintetizar el impacto de la pandemia de COVID-19 en las personas con TCA. MÉTODO: Las búsquedas en las bases de datos de la literatura revisada por pares se completaron en las bases de datos posteriores: CINAHL, Embase, MEDLINE y PsycINFO (de noviembre de 2019 al 20 de octubre de 2021). Se incluyeron todos los informes de investigación sobre la relación entre la pandemia de COVID-19 en individuos con TCA. RESULTADOS: Cincuenta y tres estudios cumplieron los criterios de inclusión, incluyendo 36,485 individuos con TCA. Los ingresos hospitalarios agrupados en los estudios demostraron en promedio un aumento del 48% (antes = 591, después = 876, n = 10 estudios) en los ingresos durante la pandemia en comparación con los puntos de tiempo previos a la pandemia. En esta revisión, el 36% de los estudios (n = 19) documentaron aumentos en los síntomas del trastorno alimentario durante la pandemia, este aumento en los síntomas del trastorno de la conducta alimentaria se documentó en pacientes con AN, TpA, BN y OSFED. Los estudios también demostraron aumentos en la ansiedad (n = 9) y la depresión (n = 8), sin embargo, los patrones de cambio parecían ser diagnósticos y específicos del momento (por ejemplo, encierros). DISCUSIÓN: Encontramos un gran aumento en el número de hospitalizaciones y un aumento en los síntomas de TCA, ansiedad, depresión y los cambios en el IMC en pacientes con TCA durante la pandemia. Sin embargo, estos cambios parecían ser diagnósticos y específicos del momento. Muchos estudios cualitativos describieron un deterioro en la sintomatología del trastorno de la conducta alimentaria (TCA) debido a la disminución del acceso a la atención y el tratamiento, los cambios en la rutina y la pérdida de estructura, la influencia negativa de los medios de comunicación y el aislamiento social. Se necesitan estudios futuros para centrarse en las poblaciones pediátricas, los nuevos diagnósticos de TCA y la gravedad de la enfermedad al momento de la presentación. PALABRAS CLAVE: trastornos de la conducta alimentaria, pandemia, COVID-19.

5.
Disabil Rehabil ; : 1-13, 2023 Jan 28.
Article in English | MEDLINE | ID: covidwho-2212432

ABSTRACT

PURPOSE: Explore trial participants' and research team members' perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc). METHODS: Data were collected cross-sectionally. A social constructivist paradigm was adopted, and one-on-one videoconference-based, semi-structured interviews were conducted with SPIN-CHAT Trial participants and research team members. A hybrid inductive-deductive approach and reflexive thematic analysis were used. RESULTS: Of the 40 SPIN-CHAT Trial participants and 28 research team members approached, 30 trial participants (Mean age = 54.9; SD = 13.0 years) and 22 research team members agreed to participate. Those who took part in interviews had similar characteristics to those who declined. Five themes were identified: (1) The SPIN-CHAT Program conferred a range of positive psychological health outcomes, (2) People who don't have SSc don't get it: The importance of SSc-specific programming, (3) The group-based format of the SPIN-CHAT Program created a safe space to connect and meet similar others, (4) The structure and schedule of the SPIN-CHAT Program reduced feelings of boredom and contributed to enhanced psychological health, (5) The necessity of knowledge, skills, and tools to self-manage SSc and navigate COVID-19. CONCLUSION: Participants' and research team members' perspectives elucidated SPIN-CHAT Program benefits and how these benefits may have been realized. Results underscore the importance of social support from similar others, structure, and self-management to enhance psychological health during COVID-19. TRIAL REGISTRATION: clinicaltrials.gov (NCT04335279)IMPLICATIONS FOR REHABILITATIONThe videoconference-based, supportive care SPIN-CHAT Program enhanced psychological health amongst individuals affected by systemic sclerosis.SPIN-CHAT Program participants and research team members shared that being around similar others, program structure, and self-management support were important and may have contributed to enhanced psychological health.Further efforts are required to explore experiences within supportive care programs to better understand if and how psychological health is impacted.

6.
PLoS One ; 17(9): e0275310, 2022.
Article in English | MEDLINE | ID: covidwho-2054375

ABSTRACT

BACKGROUND: Family visitation in intensive care units (ICU) has been impacted by the severe acute respiratory syndrome coronavirus 2 (COVID-19) pandemic. While studies report on perceptions of families completely restricted from ICUs, little is known about the burden experienced by designated family caregivers allowed to visit their critically ill loved one. This study sought the perspectives of family caregivers of critically ill patients on the impact of one-person designated visitor policies mandated in ICUs during the COVID-19 pandemic. METHODS: Throughout the study period a restricted visitation policy was mandated capturing the first (April 2020) and second (December 2020) waves of the pandemic that allowed one designated family caregiver (i.e., spouses or adult children) per patient to visit the ICU. Designated family caregivers of critically ill patients admitted to ICU September 2020 to November 2020 took part in individual 60-minute, semi-structured interviews at 6-months after discharge from the index ICU admission. Themes from family interviews were summarized with representative quotations. RESULTS: Key themes identified following thematic analysis from six participants included: one visitor rule, patient advocate role, information needs, emotional distress, strategies for coping with challenges, practicing empathy, and appreciation of growth. CONCLUSION: Designated family caregivers of critically ill patients admitted to ICU during the COVID-19 pandemic perceived a complex and highly stressful experience. Support from ICU family liaisons and psychologists may help ameliorate the impact.


Subject(s)
COVID-19 , Adult , COVID-19/epidemiology , Caregivers/psychology , Child , Critical Illness , Family , Humans , Intensive Care Units , Pandemics , Qualitative Research
7.
The Journal of adolescent health : official publication of the Society for Adolescent Medicine ; 2022.
Article in English | EuropePMC | ID: covidwho-2046977

ABSTRACT

databases. The analysis used negative binomial regression with robust standard errors to compare hospitalization counts in the months preceding and following the World Health Organization pandemic declaration (March 11, 2020). Results Hospitalizations due to pediatric AN increased by 63% and 132% at SickKids (p < .001) and ACH (p < .001), respectively, in the first year of the pandemic compared to the previous six years. The total number of non-ED hospitalizations decreased by 29.3% and 2.4% at SickKids and ACH, respectively. Discussion This is the first Canadian study to show a rise in pediatric hospitalizations over one year due to AN in two tertiary care hospitals following the onset of the pandemic, confirming the impact that the pandemic has had on children and adolescents with AN in Canada.

8.
Alzheimer's & Dementia ; 17(S7):e049559, 2021.
Article in English | Wiley | ID: covidwho-1664344

ABSTRACT

Background The emergence of COVID-19 (SARS-CoV-2) as a novel coronavirus in late 2019 necessitated public health measures that have impacted the provision of care for people living with dementia and their families. The rapid shift to virtual care across health and social care sectors meant that providers did not have the opportunity to benefit from an evidence-based understanding about how and which services can safely and effectively be delivered virtually prior to public health measures being implemented. Additionally, isolation resulting from social distancing may be harming well-being for families as formal and informal supports become less accessible. Method To understand lived experiences and necessary changes in models of care delivery for people living with dementia during the COVID-19 pandemic in Canada, we remotely interviewed 20 dyads of people living with dementia and their care partners who normally attend a dementia specialty clinic in Calgary, Alberta, during a period where essential businesses were closed and health care had abruptly transitioned to telemedicine. Participants were 50% female and a majority of clinic patients in the dyad had a diagnosis of Alzheimer?s Disease (75%). A reflexive thematic analysis was used to analyze the interview and field note data. Result Themes regarding virtual service provision emerged through the iterative qualitative data analysis: (1) continuation of community-based services for care partners and families delivered in innovative ways to meet support needs during the pandemic;(2) guidance in adapting to technology to enable accessible and effective treatment in a virtual care environment;(3) adapting the process and structure of virtual appointments to operationalize critical information provision while maintaining dignity for the person living with dementia. Conclusion The rapid move to virtual healthcare has influenced how and when people access health services. Health system innovation in the way we structure service models and care provision can mitigate barriers to maintaining high quality virtual health care for people living with dementia. In-depth understandings of how health systems can provide high-quality care in new virtual settings is key to maintaining quality of life for community-dwelling people living with dementia and care partners in times of public health emergencies.

10.
Crit Care ; 25(1): 347, 2021 09 25.
Article in English | MEDLINE | ID: covidwho-1438304

ABSTRACT

BACKGROUND: Restricted visitation policies in acute care settings because of the COVID-19 pandemic have negative consequences. The objective of this scoping review is to identify impacts of restricted visitation policies in acute care settings, and describe perspectives and mitigation approaches among patients, families, and healthcare professionals. METHODS: We searched Medline, Embase, PsycINFO, Healthstar, CINAHL, Cochrane Central Register of Controlled Trials on January 01/2021, unrestricted, for published primary research records reporting any study design. We included secondary (e.g., reviews) and non-research records (e.g., commentaries), and performed manual searches in web-based resources. We excluded records that did not report primary data. Two reviewers independently abstracted data in duplicate. RESULTS: Of 7810 citations, we included 155 records. Sixty-six records (43%) were primary research; 29 (44%) case reports or case series, and 26 (39%) cohort studies; 21 (14%) were literature reviews and 8 (5%) were expert recommendations; 54 (35%) were commentary, editorial, or opinion pieces. Restricted visitation policies impacted coping and daily function (n = 31, 20%) and mental health outcomes (n = 29, 19%) of patients, families, and healthcare professionals. Participants described a need for coping and support (n = 107, 69%), connection and communication (n = 107, 69%), and awareness of state of well-being (n = 101, 65%). Eighty-seven approaches to mitigate impact of restricted visitation were identified, targeting families (n = 61, 70%), patients (n = 51, 59%), and healthcare professionals (n = 40, 46%). CONCLUSIONS: Patients, families, and healthcare professionals were impacted by restricted visitation polices in acute care settings during COVID-19. The consequences of this approach on patients and families are understudied and warrant evaluation of approaches to mitigate their impact. Future pandemic policy development should include the perspectives of patients, families, and healthcare professionals. TRIAL REGISTRATION: The review was registered on PROSPERO (CRD42020221662) and a protocol peer-reviewed prior to data extraction.


Subject(s)
COVID-19/prevention & control , Critical Care , Family , Health Policy , Inpatients , Physical Distancing , Visitors to Patients , COVID-19/psychology , COVID-19/transmission , Communication , Family/psychology , Health Personnel/psychology , Humans , Inpatients/psychology , Mental Health Services , Pandemics , Psychological Distress , SARS-CoV-2 , Telephone , Visitors to Patients/psychology
11.
BMJ Open ; 11(9): e048227, 2021 09 23.
Article in English | MEDLINE | ID: covidwho-1438083

ABSTRACT

INTRODUCTION: Flexible visitation policies in hospitals are an important component of care that contributes to reduced stress and increased satisfaction among patients and their family members. Early evidence suggests restricted visitation policies enacted in hospitals during the COVID-19 pandemic are having unintended consequences on patients, family members and healthcare providers. There is a need for a comprehensive summary of the impacts of restricted visitation policies on key stakeholders and approaches to mitigate that impact. METHODS AND ANALYSIS: We will conduct a scoping review as per the Arksey-O'Malley 5-stage scoping review method and the Scoping Review Methods Manual by the Joanna Briggs Institute. We will search relevant electronic databases (eg, CINAHL, MEDLINE, PsycINFO), grey literature and preprint repositories. We will include all study designs including qualitative and quantitative methodologies (excluding protocols) as well as reports, opinions and editorials, to identify the broad impact of restricted hospital visitation policies due to the COVID-19 pandemic on patients, family members or healthcare providers of hospitalised patients, and approaches taken or proposed to mitigate this impact. Two reviewers will calibrate the screening criteria and data abstraction form and will independently screen studies and abstract the data. Narrative synthesis with thematic analysis will be performed. ETHICS AND DISSEMINATION: Ethical approval is not applicable as this review will be conducted on published literature only. This scoping review will identify, describe and categorise impacts of restricted hospital visitation policies due to the COVID-19 pandemic on patients, family members and healthcare providers of hospitalised patients, and approaches that have been taken to mitigate impact. We will provide a comprehensive synthesis by developing a framework of restricted visitation policies and associated impacts. Our results will inform the development of consensus statements on restricted visitation policies to be implemented in future pandemics. PROSPERO REGISTRATION NUMBER: CRD42020221662.


Subject(s)
COVID-19 , Pandemics , Family , Health Personnel , Hospitals , Humans , Policy , Research Design , Review Literature as Topic , SARS-CoV-2
12.
Can J Anaesth ; 68(10): 1474-1484, 2021 10.
Article in English | MEDLINE | ID: covidwho-1392019

ABSTRACT

PURPOSE: In response to the rapid spread of SARS-CoV-2, hospitals in Canada enacted temporary visitor restrictions to limit the spread of COVID-19 and preserve personal protective equipment supplies. This study describes the extent, variation, and fluctuation of Canadian adult intensive care unit (ICU) visitation policies before and during the first wave of the COVID-19 pandemic. METHODS: We conducted an environmental scan of Canadian hospital visitation policies throughout the first wave of the pandemic. We conducted a two-phased study analyzing both quantitative and qualitative data. RESULTS: We collected 257 documents with reference to visitation policies (preCOVID, 101 [39%]; midCOVID, 71 [28%]; and lateCOVID, 85 [33%]). Of these 257 documents, 38 (15%) were ICU-specific and 70 (27%) referenced the ICU. Most policies during the midCOVID/lateCOVID pandemic period allowed no visitors with specific exceptions (e.g., end-of-life). Framework analysis revealed five overarching themes: 1) reasons for restricted visitation policies; 2) visitation policies and expectations; 3) exceptions to visitation policy; 4) patient and family-centred care; and 5) communication and transparency. CONCLUSIONS: During the first wave of the COVID-19 pandemic, most Canadian hospitals had public-facing visitor restriction policies with specific exception categories, most commonly for patients at end-of-life, patients requiring assistance, or COVID-19 positive patients (varying from not allowed to case-by-case). Further studies are needed to understand the consistency with which visitation policies were operationalized and how they may have impacted patient- and family-centred care.


RéSUMé: OBJECTIF: En réponse à la propagation rapide du SRAS-CoV-2, les hôpitaux du Canada ont adopté des restrictions temporaires pour les visites afin de limiter la propagation de la COVID-19 et de préserver les stocks d'équipements de protection individuelle. Cette étude décrit l'ampleur, les variations et fluctuations des politiques canadiennes concernant les visites aux unités de soins intensifs (USI) pour adultes avant et pendant la première vague de la pandémie de COVID-19. MéTHODE: Nous avons réalisé une étude de milieu des politiques hospitalières canadiennes concernant les visites tout au long de la première vague de la pandémie. Nous avons mené une étude en deux phases analysant des données quantitatives et qualitatives. RéSULTATS: Nous avons recueilli 257 documents faisant référence aux politiques de visites (pré-COVID, 101 [39 %]; mid-COVID, 71 [28 %]; et COVID-tardif, 85 [33 %]). Sur ces 257 documents, 38 (15 %) étaient spécifiques aux USI et 70 (27 %) faisaient référence aux USI. La plupart des politiques au cours de la période pandémique mid-COVID/COVID-tardif ne permettaient aucune visite sauf exception spécifique (p. ex., fin de vie). L'analyse du cadre a révélé cinq thèmes généraux : 1) les raisons des restrictions des politiques de visites; 2) les politiques et attentes en matière de visites; 3) les exceptions aux politiques de visites; 4) les soins aux patients et centrés sur la famille; et 5) la communication et la transparence. CONCLUSION: Au cours de la première vague de la pandémie de COVID-19, la plupart des hôpitaux canadiens avaient des politiques de restriction des visites s'appliquant au public avec des catégories d'exception spécifiques, le plus souvent pour les patients en fin de vie, les patients nécessitant de l'aide ou les patients COVID-positifs (variant d'une interdiction au cas par cas). D'autres études sont nécessaires pour comprendre l'uniformité avec laquelle les politiques de visites ont été mises en œuvre et comment elles ont pu avoir une incidence sur les soins centrés sur le patient et la famille.


Subject(s)
COVID-19 , Pandemics , Adult , Canada , Humans , Intensive Care Units , Organizational Policy , Policy , SARS-CoV-2 , Visitors to Patients
14.
Dementia (London) ; 20(6): 2007-2023, 2021 Aug.
Article in English | MEDLINE | ID: covidwho-1004307

ABSTRACT

The COVID-19 pandemic has necessitated public health measures that have impacted the provision of care for people living with dementia and their families. Additionally, the isolation that results from social distancing may be harming well-being for families as formal and informal supports become less accessible. For those living with dementia and experiencing agitation, social distancing may be even harder to maintain, or social distancing could potentially aggravate dementia-related neuropsychiatric symptoms. To understand the lived experience of social and physical distancing during the COVID-19 pandemic in Canada, we remotely interviewed 21 participants who normally attend a dementia specialty clinic in Calgary, Alberta, during a period where essential businesses were closed and health care had abruptly transitioned to telemedicine. A reflexive thematic analysis was used to analyze the interview and field note data. The impacts of the public health measures in response to the pandemic emerged through iterative analysis in three main categories of experience: (1) personal, (2) health services, and (3) health status (of both persons living with dementia and care partner). Isolation and mental health needs emerged as important impacts to family experiences. This in-depth understanding of the needs and experiences of the pandemic for people living with dementia suggests that innovative means are urgently needed to facilitate provision of remote medicine and also social interaction and integration.


Subject(s)
COVID-19 , Caregivers , Dementia , Pandemics , COVID-19/epidemiology , COVID-19/psychology , Canada/epidemiology , Caregivers/psychology , Dementia/psychology , Dementia/therapy , Humans , Mental Health , Telemedicine
15.
Epilepsy Behav ; 113: 107599, 2020 12.
Article in English | MEDLINE | ID: covidwho-907171

ABSTRACT

OBJECTIVE: The emergence of SARS-CoV-2 (COVID-19) as a novel coronavirus resulted in a global pandemic that necessitated the implementation of social distancing measures. These public health measures may have affected the provision of care for patients with epilepsy. Social isolation may have also adversely affected well-being and quality of life due to informal and formal support networks becoming less accessible. The purpose of this qualitative study was to examine the lived experiences of patients with epilepsy and to see how their quality of life and healthcare has been affected by the COVID-19 pandemic. METHODS: From April 27 to May 15, 2020 we performed remote interviews with 18 participants who had virtual appointments with their healthcare providers and were enrolled in the Calgary Comprehensive Epilepsy Program registry. Interviews were recorded and transcribed, after which transcripts were analyzed and coded into relevant themes using NVivo 12. RESULTS: Three broad themes emerged throughout the interviews:1) impact of pandemic on informal and formal support systems; 2) impact of pandemic on healthcare provision; and 3) concerns about the impact of the pandemic on personal situations and society in the future. Participants reported anxiety and stress about decreased social engagement and activity cessations. Although face-to-face appointments were preferred, virtual care was well-received. Common concerns about the future included securing employment and burnout from balancing family responsibilities. Some patients also feared they would be stigmatized as society adapted to the situation. SIGNIFICANCE: This study highlights the need for additional research in anticipation of the implementation of remote medicine in the management and treatment of epilepsy. It also highlights the tenacity of those living with epilepsy during difficult periods despite social and familial pressures. Raising awareness during this time about the lives and experiences of epilepsy patients can help challenge misconceptions and stigma in the workplace and wider society.


Subject(s)
COVID-19/epidemiology , COVID-19/psychology , Epilepsy/epidemiology , Epilepsy/psychology , Social Isolation/psychology , Telemedicine/trends , Adult , Aged , Aged, 80 and over , Alberta/epidemiology , Epilepsy/therapy , Female , Health Personnel/psychology , Health Personnel/trends , Humans , Male , Middle Aged , Pandemics , Qualitative Research , Quality of Life/psychology , Telemedicine/methods , Young Adult
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