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1.
JAMA Health Forum ; 4(6): e231310, 2023 Jun 02.
Article in English | MEDLINE | ID: covidwho-20245714

ABSTRACT

This Viewpoint discusses how the COVID-19 pandemic has spotlighted the critical role of unpaid family caregiving.


Subject(s)
Caregivers , Gender Equity , Humans
2.
Aging Clin Exp Res ; 35(7): 1565-1569, 2023 Jul.
Article in English | MEDLINE | ID: covidwho-20238956

ABSTRACT

We cross sectionally evaluated COVID-19 and seasonal flu vaccination rates among 94 dyads consisting of informal caregiver family member and non-institutionalized patient with dementia observed in family-medicine practice in Zagreb, Croatia. COVID-19 vaccination rates in caregivers (78.7%) and patients with dementia (82.9%) were significantly higher than in general population. Caregiver and patient COVID-19 vaccination status (CVS) did not correlate. Among caregivers, seasonal flu vaccination (P = 0.004) but no other investigated factors related to caregiving or dementia severity showed significant association with CVS. Among patients with dementia, CVS was significantly associated with lower number of caregiver hours dedicated per week (P = 0.017), higher caregiver SF-36 role emotional HRQoL (P = 0.017), younger patient age (P = 0.027), higher MMSE (P = 0.030), higher Barthel index (P = 0.006), absence of neuropsychiatric symptoms of agitation and aggression (P = 0.031), lower overall caregiver burden (P = 0.034), lower burden of personal strain (P = 0.023) and lower burden of frustration (P = 0.016). Caregiving and severity of dementia-related factors significantly affect patient, but not caregiver CVS.


Subject(s)
COVID-19 , Dementia , Humans , Caregivers/psychology , Cross-Sectional Studies , Caregiver Burden , COVID-19 Vaccines , Cost of Illness , COVID-19/prevention & control , Family/psychology , Dementia/epidemiology
3.
J Med Internet Res ; 25: e45045, 2023 05 25.
Article in English | MEDLINE | ID: covidwho-20238685

ABSTRACT

BACKGROUND: Telehealth has gained substantial attention during the COVID-19 pandemic, and reimbursement policies in health care settings have increased access to remote modes of care delivery. Telehealth has the potential to mitigate care concerns for people living with dementia and their family caregivers. There is a paucity of knowledge on the performance of telehealth services and user experiences, especially among caregiving dyads during the pandemic. OBJECTIVE: This study aims to describe the implementation, effectiveness, user experience, and barriers to accessing and using telehealth services for people living with dementia and their caregivers during the COVID-19 pandemic. METHODS: Following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched 7 databases (PubMed, PsycINFO, AgeLine, CINAHL, Social Services Abstracts, Web of Science, and Scopus) and a web-based search engine (Google Scholar). The inclusion criteria for peer-reviewed English publications from March 2020 to August 2022 consisted of studies related to telehealth services for people living with dementia and their family caregivers and studies conducted during the COVID-19 pandemic. RESULTS: A total of 24 articles (10 quantitative and 14 qualitative studies) from 10 different countries were included. The major findings of the reviewed articles were extracted and organized into the following 4 themes: study design characteristics-strategies were adopted to improve the accessibility and experience of people living with dementia-caregiver dyads; efficacy outcomes of telehealth services-robust evidence is lacking on the comparative effectiveness of in-person services; perceived experiences of people living with dementia and caregivers-most reviewed studies reported positive experiences of using telehealth services and perceived personal and social benefits from their participants; and barriers to accessing and using telehealth services-several barriers related to individuals, infrastructure, and telehealth environments were identified. CONCLUSIONS: Although evidence of its effectiveness is still limited, telehealth is widely accepted as a viable alternative to in-person care for high-risk groups, such as people living with dementia and their caregivers. Future research should include expanding digital access for those with limited resources and low technology literacy, adopting randomized controlled trial designs to establish the comparative effectiveness of different modes of service delivery, and increasing the sample diversity.


Subject(s)
COVID-19 , Dementia , Telemedicine , Humans , Caregivers , Dementia/therapy , Pandemics
4.
BMC Palliat Care ; 22(1): 70, 2023 Jun 13.
Article in English | MEDLINE | ID: covidwho-20243871

ABSTRACT

BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond.


Subject(s)
COVID-19 , Caregivers , Humans , Female , Aged , Middle Aged , Male , Pandemics , Hospitals , Medical Assistance
5.
BMJ Open ; 13(6): e071023, 2023 06 01.
Article in English | MEDLINE | ID: covidwho-20243297

ABSTRACT

INTRODUCTION: Globally, no person has been untouched by the COVID-19 pandemic. Yet, little attention has been given to children and adolescents in policy, provision and services. Moreover, there is a dearth of knowledge regarding the impact of COVID-19-associated orphanhood and caregiver loss on children. This study aims to provide early insights into the mental health and well-being of children and adolescents experiencing orphanhood or caregiver loss in South Africa. METHODS AND ANALYSIS: Data will be drawn from a quantitative longitudinal study in Cape Town, South Africa. A sample of children and adolescents between the ages of 9 and 18 years, experiencing parental or caregiver loss from COVID-19, will be recruited together with a comparison group of children in similar environments who did not experience loss. The study aims to recruit 500 children in both groups. Mental health and well-being among children will be explored through the use of validated and study-specific measures. Participants will be interviewed at two time points, with follow-up data being collected 12-18 months after baseline. A combination of analytical techniques (including descriptive statistics, regression modelling and structural equation modelling) will be used to understand the experience and inform future policy and service provision. ETHICS AND DISSEMINATION: This study received ethical approval from the Health Research Ethics Committee at Stellenbosch University (N 22/04/040). Results will be disseminated via academic and policy publications, as well as national and international presentations including high-level meetings with technical experts. Findings will also be disseminated at a community level via various platforms.


Subject(s)
COVID-19 , Humans , Child , Adolescent , Cohort Studies , COVID-19/epidemiology , Longitudinal Studies , Caregivers , Pandemics , South Africa/epidemiology
6.
J Gerontol Nurs ; 49(6): 19-26, 2023 Jun.
Article in English | MEDLINE | ID: covidwho-20243197

ABSTRACT

Black American individuals have a higher rate of Alzheimer's disease and related dementias (ADRD) diagnoses compared to other racial/ethnic groups, and their family caregiver population is expected to increase rapidly over the next 2 decades. The current study aimed to explore Black American women's experiences caring for family members with ADRD. An interpretative phenomenology approach was used to gain a deeper understanding of the caregiving experiences of Black American women. Participants in the study were all Black American married women aged 63 to 81 years (mean = 71.3 years, SD = 6.6 years). Key themes that emerged from the study included: (a) Family Care Obligation, (b) Caregiving Journey, (c) Prioritizing Health Concerns, (d) Coping Behaviors, and (e) Support Needs and Challenges. Family caregivers require ongoing support, education, and guidance. Implications for nursing practice include focusing on family assessments, increased education and awareness, and collaboration with interdisciplinary teams to provide the best resources. [Journal of Gerontological Nursing, 49(6), 19-26.].


Subject(s)
Alzheimer Disease , Dementia , Female , Humans , Black or African American , Caregivers , Family , Qualitative Research , Middle Aged , Aged , Aged, 80 and over
7.
BMC Health Serv Res ; 23(1): 530, 2023 May 23.
Article in English | MEDLINE | ID: covidwho-20241851

ABSTRACT

BACKGROUND: The purpose of thispaper is to explore the experiences of parents and carers of children with chronic health conditions in accessing healthcare during the Covid-19 pandemic. Children with chronic conditions typically rely on both planned and unplanned care, and contact with healthcare professionals over extensive periods of time. Their distinct care needs render these children vulnerable to even to minor changes in healthcare provision. The wide-ranging care disruptions during the pandemic were therefore likely drastically to affect their health and wellbeing; an assessment of the effects of Covid-19 policies on healthcare access and quality of care delivered for this group is needed. METHODS: From 25/01/2022 to 25/05/2022, four focus groups were held with parents/carers of children with diabetes, neurodivergence, mental health conditions, and medical complexities to explore their experiences in navigating the healthcare system during the pandemic. Interviews were transcribed and then subjected to thematic analysis using NVivo qualitative research software. RESULTS: Our results indicate that children with chronic health conditions (and their parents/carers) experienced difficulties accessing healthcare during the pandemic. Problems with late diagnosis, prolonged waiting times, and deficiencies with telemedicine were identified, as were impacts of healthcare disruptions on children's wellbeing, and the wellbeing of wider families. We found that children with neurodivergence and those with mental health conditions were particularly affected with their health needs repeatedly de-prioritised. Furthermore, the loss of contact with multi-specialty clinical teams profoundly affected parents and carers, leaving them feeling isolated in managing their children's health. These diminished relationships became another vector for uncertainty in supporting children's health. CONCLUSION: The effects of healthcare disruptions on the welfare of children with chronic conditions (and their families), are well evidenced in this work, providing deeper understandings of the relationships between these children, their families and clinicians. The evidence in this paper aims to inform future policy and ethical guidelines so that the needs of children with long-term health conditions can be properly considered in times of crisis.


Subject(s)
COVID-19 , Telemedicine , Humans , Child , Caregivers , Pandemics , Health Services Accessibility , Chronic Disease , Parents , Policy
8.
Trials ; 24(1): 316, 2023 May 08.
Article in English | MEDLINE | ID: covidwho-20240937

ABSTRACT

BACKGROUND: Most people with dementia live in the community, not in residential care. Therefore, quality informal care for them is critical for managing behavioural and psychological symptoms of dementia (BPSD). Music therapy has been shown to reduce BPSD. However, no randomised controlled trial has examined the effects of music interventions delivered by caregivers in home settings. The HOME-based caregiver-delivered music intervention for people living with dementia (HOMESIDE) trial aims to evaluate the effectiveness of a 12-week music intervention in addition to standard care for BPSD. This article describes the statistical analysis plan. METHODS AND ANALYSIS: HOMESIDE is a large, pragmatic international three-arm parallel-group randomised controlled trial. Dyads (persons with dementia and caregiver) in Australia, Germany, the UK, Poland and Norway were randomised to receive music and standard care, reading and standard care or standard care alone. The primary outcome is BPSD (proxy) of the person living with dementia, measured using the Neuropsychiatric Inventory-Questionnaire (NPI-Q) at 90 and 180 days post-randomisation. Longitudinal analysis will compare NPI-Q severity between music and standard care versus standard care alone. Secondary outcomes include quality of life and depression (both person with dementia and caregiver), cognition (person with dementia only), distress, resilience, competence and caregiver-patient relationship (caregiver only). Treatment effects will be obtained at 90 and 180 days post-randomisation, where applicable. Safety outcomes (adverse events, hospitalisations, deaths) will be summarised. DISCUSSION: This statistical analysis plan provides a detailed methodology for the analysis of HOMESIDE and will improve the validity of the study and reduce the potential for bias. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001799246. Registered on November 05, 2018. CLINICALTRIALS: gov NCT03907748. Registered on April 09, 2019.


Subject(s)
Dementia , Music , Humans , Caregivers , Australia , Quality of Life , Reading , Dementia/diagnosis , Dementia/therapy
9.
Rev Infirm ; 72(291): 35-36, 2023 May.
Article in French | MEDLINE | ID: covidwho-20233484

ABSTRACT

Foot reflexology is the use of massage and acupressure techniques on the feet, which represent each organ of the human body. The reflexologist knows precisely the anatomy of the body and the reflex points on the feet in order to relieve and treat the person's problems. A team from the University Hospital of Clermont-Ferrand shares a very positive experience, unfortunately interrupted by the Covid-19 health crisis.


Subject(s)
COVID-19 , Palliative Care , Humans , Caregivers , Foot , Massage/methods
10.
Dementia (London) ; 22(6): 1292-1313, 2023 Aug.
Article in English | MEDLINE | ID: covidwho-20233464

ABSTRACT

Use of digital technologies to support meaningful engagement of people with dementia and carers increased during the COVID-19 pandemic. The purpose of this scoping review was to determine the effectiveness of digital technologies in supporting the engagement and wellbeing of people with dementia and family carers at home and in care homes. Studies published in peer reviewed literature were identified across four databases (CINAHL, Medline, PUBMED, PsychINFO). Sixteen studies met the inclusion criteria. Findings indicate that digital technologies can potentially support the wellbeing of people with dementia and family carers, although only a few studies had measured impact on wellbeing, as many were reporting on technology at proof-of-concept stage rather than commercially ready products. Moreover, current studies lacked meaningful involvement of people with dementia, family carers, and care professionals in the design of the technology. Future research should bring together people with dementia, family carers, care professionals and designers to coproduce digital technologies with researchers and evaluate them using robust methodologies. Codesign should start early in the intervention development phase and continue until implementation. There is a need for real world applications that nurture social relationships by focusing on how digital technologies can support more personalised, adaptive forms of care. Developing the evidence base to identify what makes digital technologies effective in supporting the wellbeing of people with dementia is crucial. Future interventions should therefore consider the needs and preferences of people with dementia, their families, and professional carers, as well as the suitability and sensitivity of wellbeing outcome measures.


Subject(s)
COVID-19 , Dementia , Humans , Caregivers , Digital Technology , Pandemics
11.
J Frailty Aging ; 11(3): 335-336, 2022.
Article in English | MEDLINE | ID: covidwho-20240841

Subject(s)
COVID-19 , Caregivers , Humans
12.
Prim Health Care Res Dev ; 24: e41, 2023 05 25.
Article in English | MEDLINE | ID: covidwho-20231075

ABSTRACT

AIM: The present study explored the family caregivers' perspectives and elicited their experience while managing dementia care during the COVID-19 pandemic in Odisha, India. BACKGROUND: The onset of the COVID-19 pandemic has diverted the attention of health systems away from chronic disease management and health services delivery. Psychiatric care particularly for dementia and the elderly is found to be more compromised in such situation. METHODS: We adopted an inductive phenomenological approach to garner key insights into the care continuity for people living with dementia in the context of the COVID-19 pandemic. Telephonic in-depth interviews (IDIs) were carried out with 17 immediate caregivers. All IDIs were digitally recorded, transcribed, and analysed using a thematic approach. FINDINGS: Caregivers did not perceive dementia as an overwhelming challenge; instead viewed it as a part of the ageing process. Caring for dementia was being done by family members as a collective responsibility with task-sharing. The caregivers primarily relied on their usual physician for the continuity of dementia care and took utmost precautions to prevent exposure to COVID-19 risk. However, they found it more challenging to ensure adequate care for the multiple illnesses (multimorbidity) coexisting with dementia. Towards this, they adopted all possible measures to keep the chronic conditions under control, lest the vulnerability to COVID-19 infection might heighten. The fear of visiting a hospital, prevailing restrictions in mobility, and diverted attention of health systems to pandemic containment created impediments towards maintaining multimorbidity care. The support of local administration, neighbourhood pharmacy and diagnostic laboratories and teleconsultation with the physicians were vital for care continuity. Caregivers adapted by reducing or deferring physical consultation and seeking treatment via telephonic advice of the treating physicians. Our findings suggest leveraging digitally enabled health care technology and augmenting caregiver activation for home-based dementia care to cruise through any similar catastrophic situations.


Subject(s)
COVID-19 , Dementia , Aged , Humans , Caregivers , Pandemics , India , Dementia/therapy
13.
J Gerontol Nurs ; 49(3): 19-26, 2023 Mar.
Article in English | MEDLINE | ID: covidwho-20231047

ABSTRACT

The coronavirus disease 2019 (COVID-19) pandemic placed new strains on informal caregivers, who are already vulnerable to negative psychosocial effects due to demands of the caregiving role. The current study aimed to explore the early impact of COVID-19 on caregivers living with and apart from care recipients. Semi-structured qualitative interviews with seven cohabitating and 10 distanced caregivers of patients in a home-based primary care program were conducted from April to November 2020. A framework matrix was used to identify patterns in caregiver experiences. Cohabitating and distanced caregivers reported shared concerns about COVID-19 and unique concerns dependent on cohabitation status. Cohabitating caregivers reported financial worries, care recipients with dementia being unable to understand restrictions, and concerns about community business changes. Distanced caregivers reported communication challenges with cognitively impaired care recipients and challenges with visitation policies. During pandemics, caregivers' clinical and policy support needs may differ depending on their place of residence relative to care recipients. [Journal of Gerontological Nursing, 49(3), 19-26.].


Subject(s)
COVID-19 , Geriatric Nursing , Home Care Services , Humans , Aged , Caregivers , Communication
14.
Scand J Caring Sci ; 37(2): 350-363, 2023 Jun.
Article in English | MEDLINE | ID: covidwho-2322670

ABSTRACT

BACKGROUND: In this study, we investigate how socio-demographic characteristics (age, gender and education) and informal care relationship characteristics (e.g., time spent on care, number of informal caregivers, professional care) are linked with informal care burden during the COVID-19 pandemic. In addition, we expect this burden to differ by personality characteristics, degree of resilience, and-in this specific context-perceived the COVID-19 threat. METHOD: We used the fifth wave of a longitudinal study to identify 258 informal caregivers. These online survey data came from a five-wave longitudinal study in Flanders, Belgium that ran from April 2020 to April 2021. Data were representative of the adult population by age and gender. Analyses include t-tests, ANOVA, SEM and binomial logistic regression. RESULTS: We found that the informal care burden was strongly linked with a socio-economic gradient, time investment changes in care since the start of the pandemic, and whether there was more than one informal caregiver. Personality traits such as agreeableness and openness to experience, and the perceived threat of COVID-19 were also related to care burden. CONCLUSIONS: During the pandemic, informal caregivers were put under extra considerable pressure: restrictive government measures sometimes led to the temporary suspension of some or all professional care for persons with care needs, which may have resulted in a growing psychosocial burden. We recommend that, in the future, the focus should be on supporting the mental wellbeing and social participation of caregivers along with measures to protect caregivers and their relatives from COVID-19. Support structures for informal caregivers should be kept running during crises now and in the future, but it is also important to adopt a case-by-case basis to consider support for informal caregivers.


Subject(s)
COVID-19 , Pandemics , Adult , Humans , Caregiver Burden , Belgium/epidemiology , Longitudinal Studies , COVID-19/epidemiology , Patient Care , Caregivers/psychology , Personality
15.
Dementia (London) ; 22(6): 1241-1258, 2023 Aug.
Article in English | MEDLINE | ID: covidwho-2322592

ABSTRACT

The prevalence of dementia is growing as the population and longevity increase. Caregivers of adults with dementia report stress and fatigue and often neglect their health. They also indicate the need for information to address health-related issues, including nutritional problems, of their family members with dementia (FMWD). This study examined the impact of coaching to improve family caregiver (FCG) stress and well-being and to increase the protein intake of both FCGs and their FMWD. All participants received nutrition education including a protein prescription (1.2 g/kg body weight/day) and FCGs received stress-reduction materials. Coached-group randomized participants also received weekly diet coaching and stress-reduction coaching. At baseline and 8 weeks, anthropometrics, a mini-nutritional assessment questionnaire, and diet (protein intake) were assessed in FCGs and FMWD; well-being, fatigue and strain were assessed in FCGs. Repeated two words measures analysis of variance and Fisher's exact tests examined within group and intervention effects. Twenty-five FCGs (13 coached group, 12 not-coached group) and 23 FMWD (12 coached group, 11 not-coached group) completed the study. No significant differences were found between coached and not-coached FCGs and FMWD at baseline. After 8- weeks, FCGs' protein intake significantly increased from 1.00 ± 0.17 to 1.35 ± 0.23 g/kg/body weight in the coached group and from 0.91 ± 0.19 to 1.01 ± 0.33 g/kg/body weight in the not-coached group; there was also an intervention effect (p=.01, η2 = .24). The percentage of FCGs with baseline protein intake less than prescription guidelines and with an end-of-study protein intake meeting/exceeding the prescription significantly differed, with 60% of coached FCGs versus 10% of not coached FCGs meeting the prescription. No intervention effects were shown for protein intake in FMWD or for well-being, fatigue or strain among FCGs. Diet coaching with nutrition education successfully assisted FCGs with improving their protein intake versus nutrition education alone.


Subject(s)
COVID-19 , Dementia , Mentoring , Telemedicine , Adult , Humans , Body Weight , Caregivers/education , Dietary Proteins , Family , Fatigue
16.
BMC Health Serv Res ; 23(1): 499, 2023 May 17.
Article in English | MEDLINE | ID: covidwho-2324008

ABSTRACT

BACKGROUND: Hospital at home (HaH) provides acute healthcare services in patients' homes instead of traditional in-patient care. Research has reported positive outcomes for patients and reduced costs. Although HaH has developed into a global concept, we have little knowledge about the involvement and role of family caregivers (FCs) of adults. The aim of this study was to explore FC involvement and role during HaH treatment as perceived by patients and FCs in a Norwegian healthcare context. METHODS: A qualitative study was carried out among seven patients and nine FCs in Mid-Norway. The data was obtained through fifteen semi-structured interviews; fourteen were performed individually and one as duad interview. The age of the participants varied between 31 and 73 years, and mean age of 57 years. A hermeneutic phenomenological approach was used, and the analysis was performed according to Kvale and Brinkmann's description of interpretation. RESULTS: We identified three main categories and seven subcategories regarding FC involvement and role in HaH: (1) Preparing for something new and unfamiliar, including the subcategories `Lack of involvement in the decision process` and `Information overload affecting caregiver readiness`, (2) Adjusting to a new everyday life at home, including the subcategories `The critical first days at home`, `Coherent care and support in a novel situation`, and `Prior established family roles influencing the new everyday life at home`, (3) FCs` role gradually diminishes and looking back, including the subcategories `A smooth transition to life beyond hospital at home` and `Finding meaning and motivation in providing care`. CONCLUSIONS: FCs played an important role in HaH, although their tasks, involvement and effort varied across different phases during HaH treatment. The study findings contribute to a greater understanding of the dynamic nature of the caregiver experiences during HaH treatment, which can guide healthcare professionals on how they can provide timely and appropriate support to FCs in HaH over time. Such knowledge is important to decrease the risk of caregiver distress during HaH treatment. Further work, such as longitudinal studies, should be done to examine the course of caregiving in HaH over time to correct or support the phases described in this study.


Subject(s)
Caregivers , Home Care Services , Humans , Adult , Middle Aged , Aged , Hospitals , Qualitative Research , Norway , Family
17.
BMC Health Serv Res ; 23(1): 453, 2023 May 08.
Article in English | MEDLINE | ID: covidwho-2323631

ABSTRACT

BACKGROUND: The goal of Project Austin, an initiative to improve emergency care for rural children who are medically complex (CMC), is to provide an Emergency Information Form (EIF) to their parents/caregivers, to local Emergency Medical Services, and Emergency Departments. EIFs are standard forms recommended by the American Academy of Pediatrics that provide pre-planned rapid response instructions, including medical conditions, medications, and care recommendations, for emergency providers. Our objective is to describe the workflows and perceived utility of the provided emergency information forms (EIFs) in the acute medical management of CMC. METHODS: We sampled from two key stakeholder groups in the acute management of CMC: four focus groups with emergency medical providers from rural and urban settings and eight key informant interviews with parents/caregivers enrolled in an emergency medical management program for CMC. Transcripts were thematically analyzed in NVivo© by two coders using a content analysis approach. The thematic codes were combined into a codebook and revised the themes present through combining relevant themes and developing of sub-themes until they reached consensus. RESULTS: All parents/caregivers interviewed were enrolled in Project Austin and had an EIF. Emergency medical providers and parents/caregivers supported the usage of EIFs for CMC. Parents/caregivers also felt EIFs made emergency medical providers more prepared for their child. Providers identified that EIFs helped provide individualized care, however they were not confident the data was current and so felt unsure they could rely on the recommendations on the EIF. CONCLUSION: EIFs are an easy way to engage parents, caregivers, and emergency medical providers about the specifics of a care for CMC during an emergency. Timely updates and electronic access to EIFs could improve their value for medical providers.


Subject(s)
Caregivers , Emergency Medical Services , Child , Humans , Workflow , Emergency Service, Hospital , Academies and Institutes
18.
Palliat Med ; 37(7): 1025-1033, 2023 Jul.
Article in English | MEDLINE | ID: covidwho-2323255

ABSTRACT

BACKGROUND: COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. AIM: Based on routinely collected bereaved family reports, actionable practices were identified to maintain and improve care in the last month of life, with potential application to all seriously ill patients. DESIGN: The Veterans Health Administration's Bereaved Family Survey is used nationally to gather routine feedback from families and caregivers of recent in-patient decedents; the survey includes multiple structured items as well as space for open narrative responses. The responses were analyzed using qualitative content analysis with dual review. SETTING/PARTICIPANTS: Between February 2020 and March 2021, there were 5372 responses to the free response questions of which 1000 (18.6%) responses were randomly selected. The 445 (44.5%) responses from 377 unique individuals included actionable practices. RESULTS: Bereaved family members and caregivers identified four opportunities with a total of 32 actionable practices. Opportunity 1: Facilitate the use of video communication, included four actionable practices. Opportunity 2: Provide timely and accurate responses to family concerns, included 17 actionable practices. Opportunity 3: Accommodate family/caregiver visitation, included eight actionable practices. Opportunity 4: Offer physical presence to the patient when family/caregivers are unable to visit, included three actionable practices. CONCLUSION: The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.


Subject(s)
COVID-19 , Terminal Care , Humans , Critical Care , Critical Illness , Quality of Health Care , Family , Caregivers , Palliative Care
19.
J Community Health ; 48(3): 390-397, 2023 06.
Article in English | MEDLINE | ID: covidwho-2326732

ABSTRACT

The more than one million COVID-19 deaths in the United States include parents, grandparents, and other caregivers for children. These losses can disrupt the social, emotional, and economic well-being of children, their families, and their communities, and understanding the number and characteristics of affected children is a critical step in responding. We estimate the number of children who lost a parent or other co-residing caregiver to COVID-19 in the U.S. and identify racial, ethnic, and geographic disparities by aligning COVID-19 death counts through mid-May 2022 with household information from a representative sample of individuals. We estimate that 216,617 children lost a co-residing caregiver to COVID-19; 77,283 lost a parent and more than 17,000 children lost the only caregiver with whom they lived. Non-White children were more than twice as likely as White children to experience caregiver loss, and children under 14 years old experienced 70% of caregiver loss. These losses are a salient threat to the functioning of families and the communities in which COVID-19 deaths are concentrated, compounding additional challenges to physical and mental health and economic stability disproportionately imposed by the pandemic on historically disadvantaged populations. Policymakers and systems should take steps to ensure access to appropriate supports.


Subject(s)
COVID-19 , Humans , Child , United States/epidemiology , Adolescent , COVID-19/epidemiology , Caregivers/psychology , Prevalence , Parents , Family Characteristics
20.
Actas Esp Psiquiatr ; 51(2): 56-64, 2023 Mar.
Article in English | MEDLINE | ID: covidwho-2324769

ABSTRACT

The lockdown during the first wave of COV- ID-19 in Spain has been related to higher levels of anxiety in the general population. However, the emotional impact on Spanish caregivers of individuals with neurodevelopmental disorders (NDD) has not been studied so far.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Down Syndrome , Williams Syndrome , Humans , Williams Syndrome/psychology , Autism Spectrum Disorder/psychology , Caregivers/psychology , COVID-19/psychology , Spain/epidemiology , Communicable Disease Control , Anxiety/epidemiology
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