ABSTRACT
The current descriptive qualitative study explored the perceived impact of the coronavirus disease 2019 pandemic on sleep disturbances and nighttime agitation; the reported use of antipsychotics and other sedating medications; and the overall well-being of older adults with Alzheimer's disease and related dementias (ADRD) and their caregivers. One investigator conducted in-depth, phone interviews with caregivers of nursing home residents with ADRD (four family caregivers [FCs], three nurse practitioners [NPs]) and seven FCs of older adults with ADRD who lived with them at home. Caregivers described multiple sleep disturbances. Nighttime agitation symptoms were perceived to continue or worsen, and sedating medications and nonpharmacological interventions were required. Adverse impacts on reported well-being were significant, and impacts were grouped into emotional, social, and physical themes. Caregivers said, "Please don't forget us," and requested telehealth support for those at home and technology and human resources for nursing homes to reduce adverse impacts. [Research in Gerontological Nursing, 15(5), 217-228.].
Subject(s)
Alzheimer Disease , Antipsychotic Agents , COVID-19 , Sleep Wake Disorders , Aged , Caregivers/psychology , Humans , PandemicsABSTRACT
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 CharacteristicsABSTRACT
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/epidemiologyABSTRACT
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 , PersonalityABSTRACT
OBJECTIVE: This study aimed to develop a measure of contributory factors to safety incidents in care homes to be completed by residents and/or their unpaid carers. INTRODUCTION: Care home residents are particularly vulnerable to patient safety incidents, due to higher likelihood of frailty, multimorbidity and cognitive decline. However, despite residents and their carers wanting to be involved in safety initiatives, there are few mechanisms for them to contribute and make meaningful safety improvements to practice. METHODS: We developed 73 evidence-based items from synthesis and existing measures, which we presented to a panel of stakeholders (residents/carers, health/social care professionals and researchers). We used two online rounds of Delphi to generate consensus (80%) on items important to include in the Resident Measure of Safety in Care Homes (RMOS); a consensus meeting was later held. The draft RMOS developed through the Delphi was presented to participants during 'Think Aloud' interviews using cognitive testing techniques. RESULTS: The 29-item RMOS was developed. Forty-three participants completed Delphi round 1, and 27 participants completed round 2, 11 participants attended the consensus meeting and 12 'Think Aloud' interviews were conducted. Of the 73 original items, 42 items that did not meet consensus in Delphi round 1 were presented in round 2. After the consensus meeting, it was agreed that 35 items would comprise the RMOS questionnaire and were presented in the 'Think Aloud' interviews. Participants suggested numerous changes to items mostly to improve comprehension and ability to answer. CONCLUSION: We have a developed an evidence-based RMOS, with good face validity, to assess contributory factors to safety in care homes from a resident/carer perspective. Future work will involve psychometrically testing the items in a pilot and developing a complementary simplified, dementia-friendly version to promote inclusivity. PATIENT OR PUBLIC INVOLVEMENT: Four patient and public contributors worked with researchers to develop the online questionnaires. Patients (residents) and carers participated on the consensus panel. One member of the research team is an expert by lived experience and was involved in design and analysis decisions. The item list and instructions for the questionnaires were reviewed for face validity, understanding and acceptability by a patient and public involvement group and modified.
Subject(s)
Caregivers , Health Personnel , Humans , Delphi Technique , Caregivers/psychology , Research Design , Surveys and QuestionnairesABSTRACT
INTRODUCTION: Providing informal care to one's romantic partner who is ill may become a highly distressing and demanding task. Based on the innovative dyadic coping model, several support interventions have been developed to alleviate informal caregivers' burden, including both caregivers' and care receivers' needs. Considering the unique challenges characterising the caregiving phenomenon, such as geographical barriers and time restrictions, digital solutions should be considered. However, there is a lack of research examining the effectiveness of dyadic digital solutions. Thus, this review aims to examine the existing literature on the efficacy of dyadic digital psychological interventions designed for caregivers and their care-receivers couples within the illness context. METHODS AND ANALYSIS: Randomised controlled trials targeting caregivers' burden among dyads of informal caregivers and care receivers will be identified via an electronic search of the following databases: PubMed, Embase, the Cochrane Library, Cinhal, Scopus, PsycINFO, MEDLINE and supplemented by hand searching of previous systematic reviews. The search will be undertaken following the PICO (population, intervention, comparison and outcome) elements. If possible, a meta-analysis will be conducted to examine: (1) the effectiveness of dyadic digital psychological interventions for reducing caregivers' burden (primary outcome) among caregivers who are in a romantic relationship with the care receivers; (2) the effectiveness of dyadic digital psychological interventions on secondary outcomes such as anxiety, depression, stress, quality of life, well-being and self-efficacy among caregivers and care receivers; and (3) moderating effects of clinical and methodological factors on caregivers' burden. Prior to inclusion in the review, retrieved papers will be critically appraised by two independent reviewers. The Cochrane Risk of Bias tool will assess the risk of bias for randomised controlled trials. ETHICS AND DISSEMINATION: Ethical approval is not required as no primary data will be collected. Findings will be disseminated through peer-reviewed publications, presentations at academic conferences and lay summaries for various stakeholders. PROSPERO REGISTRATION NUMBER: CRD42022299125.
Subject(s)
Caregiver Burden , Quality of Life , Humans , Psychosocial Intervention , Adaptation, Psychological , Anxiety , Caregivers/psychology , Systematic Reviews as Topic , Meta-Analysis as TopicABSTRACT
BACKGROUND: Autism is a neurodevelopmental disability affecting over 1% of UK children. The period following a child's autism diagnosis can present real challenges in adaptation for families. Twenty to 50% of caregivers show clinically significant levels of mental health need within the post-diagnostic period and on an ongoing basis. Best practice guidelines recommend timely post-diagnostic family support. Current provision is patchy, largely unevidenced, and a source of dissatisfaction for both families and professionals. There is a pressing need for an evidenced programme of post-diagnostic support focusing on caregiver mental health and adjustment, alongside autism psycho-education. This trial tests the clinical and cost-effectiveness of a new brief manualised psychosocial intervention designed to address this gap. METHODS: This is a multi-centre two-parallel-group single (researcher)-blinded randomised controlled trial of the Empower-Autism programme plus treatment-as-usual versus usual local post-diagnostic offer plus treatment-as-usual. Caregivers of children aged 2-15 years with a recent autism diagnosis will be recruited from North West England NHS or local authority centres. Randomisation is individually by child, with one "index" caregiver per child, stratified by centre, using 2:1 randomisation ratio to assist recruitment and timely intervention. Empower-Autism is a group-based, manualised, post-diagnostic programme that combines autism psycho-education and psychotherapeutic components based on Acceptance and Commitment Therapy to support caregiver mental health, stress management and adjustment to their child's diagnosis. The comparator is any usual local group-based post-diagnostic psycho-education offer. Receipt of services will be specified through health economic data. PRIMARY OUTCOME: caregiver mental health (General Health Questionnaire-30) at 52-week follow-up. SECONDARY OUTCOMES: key caregiver measures (wellbeing, self-efficacy, adjustment, autism knowledge) at 12-, 26- and 52-week follow-up and family and child outcomes (wellbeing and functioning) at 52-week endpoint. SAMPLE: N=380 (approximately 253 intervention/127 treatment-as-usual). Primary analysis will follow intention-to-treat principles using linear mixed models with random intercepts for group membership and repeated measures. Cost-effectiveness acceptability analyses will be over 52 weeks, with decision modelling to extrapolate to longer time periods. DISCUSSION: If effective, this new approach will fill a key gap in the provision of evidence-based care pathways for autistic children and their families. TRIAL REGISTRATION: ISRCTN 45412843 . Prospectively registered on 11 September 2019.
Subject(s)
Acceptance and Commitment Therapy , Autism Spectrum Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Caregivers/psychology , Child , Cost-Benefit Analysis , Humans , Mental Health , Quality of Life , United KingdomABSTRACT
OBJECTIVES: To explore the impact of the COVID-19 pandemic on the experiences of caregivers of children with tracheostomies. DESIGN: Qualitative semistructured interviews. SETTING: All participants were currently, or had previously cared for, a tracheostomised child who had attended a tertiary care centre in the North of England. Health professionals were purposively sampled to include accounts from a range of professions from primary, community, secondary and tertiary care. PARTICIPANTS: Carers of children with tracheostomies (n=34), including health professionals (n=17) and parents (n=17). INTERVENTIONS: Interviews were undertaken between July 2020 and February 2021 by telephone or video link. MAIN OUTCOME MEASURE: Qualitative reflexive thematic analysis with QSR NVivo V.12. RESULTS: The pandemic has presented an additional and, for some, substantial challenge when caring for tracheostomised children, but this was not always felt to be the most overriding concern. Interviews demonstrated rapid adaptation, normalisation and varying degrees of stoicism and citizenship around constantly changing pandemic-related requirements, rules and regulations. This paper focuses on four key themes: 'reconceptualising safe care and safe places'; 'disrupted support and isolation'; 'relationships, trust and communication'; and 'coping with uncertainty and shifting boundaries of responsibility'. These are described within the context of the impact on the child, the emotional and physical well-being of carers and the challenges to maintaining the values of family-centred care. CONCLUSIONS: As we move to the next phase of the pandemic, we need to understand the impact on vulnerable groups so that their needs can be prioritised.
Subject(s)
COVID-19/epidemiology , Caregivers/psychology , Parents/psychology , Tracheostomy , Adaptation, Psychological , Child , Humans , Pandemics , Patient Care Team , Professional-Family Relations , SARS-CoV-2 , Social Isolation , Social Support , TrustABSTRACT
BACKGROUND: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. METHODS: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). RESULTS: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). CONCLUSIONS: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. TRIAL REGISTRATION: N/A.
Subject(s)
Parkinson Disease , Quality of Life , Humans , Female , Middle Aged , Male , Quality of Life/psychology , Parkinson Disease/therapy , Parkinson Disease/psychology , Cost of Illness , Caregivers/psychology , Health Status , Surveys and QuestionnairesABSTRACT
BACKGROUND: Tuberous sclerosis complex (TSC) is a rare genetic condition commonly accompanied by neurological and neuropsychological disorders, resulting in a high burden of illness for individuals and a substantial impact on their caregivers. Due to the diversity and complexity of clinical manifestations, patients with TSC need aligned multidisciplinary healthcare services starting in childhood through to adulthood. However, patients and caregivers are sometimes dissatisfied with the care provided, for which one of the most common reasons is a lack of involvement in clinical decision-making. Shared decision-making, whereby clinicians make clinical management decisions together with patients and their caregivers, is advocated for in the management of epilepsy, but evidence of its benefit in managing TSC is currently lacking. In this cross-sectional, UK-based analysis we used an online survey to capture the experiences of primary caregivers for individuals with TSC, including the impact on work productivity, clinical shared decision-making, satisfaction with care, and the impact of the coronavirus disease 2019 (COVID-19) pandemic. RESULTS: In total, 73 eligible caregivers provided consent (analysis set), with 14 completing the survey partially and 59 completing the full survey. Many caregivers (72%) reported receiving recommendations about new treatments from their doctor and discussing the treatment together, with a high proportion (89%) preferring that treatment was initiated at a low dose. Most caregivers (69%) were satisfied or extremely satisfied with pediatric TSC healthcare services, but only 25% were satisfied or extremely satisfied with the transition to adult TSC healthcare services. Several (n = 30) caregivers specified the impact of caring on their work productivity and career in optional open-ended survey responses. Finally, 80% of caregivers indicated that the COVID-19 pandemic had a "large" or "very large" impact on their caring activities, negatively affecting the emotional wellbeing and behavior of individuals with TSC, and caregivers' ability to work and arrange medical appointments. CONCLUSIONS: Caregivers largely feel involved in treatment decisions, and the majority were satisfied with healthcare services for children with TSC. However, many highlighted the need for an improved transition from pediatric to adult healthcare services. The survey also showed that COVID-19 has considerably affected caregivers and individuals with TSC.
Subject(s)
COVID-19 , Tuberous Sclerosis , Adult , Humans , Child , Caregivers/psychology , Tuberous Sclerosis/complications , Cross-Sectional Studies , Pandemics , COVID-19/complications , United KingdomABSTRACT
Background: Coronavirus disease-19 (COVID-19) is a widespread disease all over the world that has caused many psychological complications such as health anxiety (HA) and low quality of life (QOL). Mindfulness-based approaches could improve these complications. Therefore, this study aimed to investigate the effect of Internet-delivered mindfulness stress reduction combined with acceptance and commitment therapy (IMSR-ACT) on QOL and HA of caregivers of patients infected by COVID-19. Methods: In this randomized clinical trial, 72 people from Golpayegan city, Iran, who had a patient with COVID-19 in their family were selected from March to June 2020. A caregiver with a score above 27 on the Health Anxiety inventory (HAI-18) was selected using simple random sampling. Participants were assigned in the intervention or control group by permuted block random allocation. The intervention group was trained by MSR and ACT techniques for 9 weeks accomplished via WhatsApp. All participants completed the QOLQuestionnaire-12 (SF-12) items and HAI-18 before and after completing IMSR-ACT sessions. The data were analyzed through SPSS-23 software, using Chi square, independent and paired t-test, and analysis of covariance, and P-value<0.05 was considered as significant. Results: The results showed that the intervention group compared to the control group had a significant decrease in all subscales of HAI after the intervention including worry about consequences (5.78±2.66 vs. 7.37±1.34, P=0.004) and awareness of bodily sensation or changes (8.90±2.77 vs. 11.75±2.30, P=0.001), worry about health (10.94±2.38 vs. 13.09±1.92, P=0.001), and total score of HAI (25.62±4.93 vs. 32.25±3.93, P=0.001). Also, the intervention group compared to the control group had better QOL after the intervention in general health perceptions (3.03±0.96 vs. 2.43±0.95, P=0.01), mental health (7.12±2.25 vs. 6.34±1.85 and P=0.01) and mental component summary) 16.78±3.75 vs. 15.43±3.05, P=0.01), physical component summary (16.06±2.66 vs. 15.19±2.25, P=0.01), and total score of SF-12 (32.84±5.39 vs. 30.62±4.34, P=0.004). Conclusion: Internet-delivered MSR combined with ACT could improve the HA and QOL of caregivers with patients infected by COVID-19. Thus, it can used in other similar situations for now and future. Also, it seems to be a useful approach for caregivers of the other illnesses. Trial Registration Number: IRCT20180909040974N.
Subject(s)
Acceptance and Commitment Therapy , COVID-19 , Mindfulness , Humans , Quality of Life , COVID-19/therapy , Caregivers/psychology , Anxiety/therapy , InternetABSTRACT
OBJECTIVE: The primary objective was to quantify psychosocial risk in family caregivers (FCs) of children with medical complexity (CMC) during the COVID-19 pandemic using the Psychosocial Assessment Tool (PAT). The secondary objectives were to compare this finding with the average PAT score of this population before the COVID-19 pandemic and to examine potential clinical predictors of psychosocial risk in FCs of CMC. DESIGN: Cross-sectional study. PARTICIPANTS: FCs of CMC were recruited from the Long-Term Ventilation Clinic at The Hospital for Sick Children, Toronto, Ontario, Canada. A total of 91 completed the demographic and PAT questionnaires online from 10 June 2021 through 13 December 2021. MAIN OUTCOME MEASURES: Mean PAT scores in FCs were categorised as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic and clinical variables on overall PAT scores was assessed using multiple linear regression analysis. Comparisons with a previous study were made using Mann-Whitney tests and χ2 analysis. RESULTS: Mean (SD) PAT score was 1.34 (0.69). Thirty-one (34%) caregivers were classified as Universal, 43 (47%) as Targeted and 17 (19%) as Clinical. The mean PAT score (1.34) was significantly higher compared with the mean PAT score (1.17) found prior to the COVID-19 pandemic. Multiple linear regression analysis demonstrated an overall significant model, with the number of hospital admissions since the onset of COVID-19 being the only variable associated with the overall PAT score. CONCLUSION: FCs of CMC are experiencing significant psychosocial stress during the COVID-19 pandemic. Timely and effective interventions are warranted to ensure these individuals receive the appropriate support.
Subject(s)
COVID-19 , Caregivers , Child , Humans , Caregivers/psychology , Cross-Sectional Studies , Pandemics , COVID-19/epidemiology , Ontario/epidemiologyABSTRACT
Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.
Subject(s)
Bereavement , COVID-19 , Neoplasms , Humans , Young Adult , Adult , Adolescent , Caregivers/psychology , Pandemics , COVID-19/epidemiology , Neoplasms/epidemiology , Neoplasms/psychology , DeathABSTRACT
OBJECTIVES: Engaging with finances has become increasingly digitalised in recent years, particularly since the COVID-19 pandemic, yet it is unknown how finance management has been affected in people living with dementia. The aim of this qualitative study was therefore to explore how digitalisation and the recent pandemic have affected finance management skills in people with dementia. METHODS: Semi-structured interviews were conducted remotely with people with dementia and unpaid carers living in the UK via phone or Zoom between February and May 2022. Transcripts were coded by one of four different research team members, including two unpaid carers who were public advisers on the project. Data were analysed using inductive thematic analysis. RESULTS: Thirty carers and people with dementia participated, and five overarching themes were identified. Managing finances has been both simplified and made more complicated by digitalising how money is spent and managed, with people with dementia and unpaid carers reporting advantages of using direct debits and debit cards, as well as digital illiteracy barriers for older relatives with dementia. Unpaid carers have received no support in managing their relative's finances, and were found to be burdened by the additional caring duties. CONCLUSIONS: Carers need to be supported in managing their relative's finances as well as with their general well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they develop dementia, and improved access to a computer/tablet/smart phone.
Subject(s)
COVID-19 , Dementia , Middle Aged , Humans , Aged , Dementia/psychology , Pandemics , Caregivers/psychology , Qualitative ResearchABSTRACT
The study aimed to characterize and understand the difficulties experienced by informal caregivers from a bio-psychosocial and environmental perspective, taking into account the socio-demographic and health characteristics of the informal caregiver and the person cared for, quality of life, perceived burden, social support, and the impact of the COVID-19 pandemic on the informal caregiver and the person cared for. The participants were 371 informal primary caregivers, 80.9% female, aged between 25 and 85 years, mean 53.17 (SD = 11.45) years. Only 16.4% of the informal caregivers benefited from monitoring and training for informal caregiver skills; 34.8% received information on the rights of the person being cared for; 7.8% received advice or guidance on the rights and duties of the informal caregiver; 11.9% of the caregivers benefited from psychological support; and 5.7% participated in self-help groups. A convenience sample was used, and data were collected via an online questionnaire. The main findings show that the major difficulties experienced by caregivers are related to social constraints, the demands of caring, and the reactions of the person cared for. The results reveal that the burden of the main informal caregivers is explained by the level of education, quality of life, level of dependence of the person cared for, level of difficulties, and social support. The COVID-19 pandemic impacted caregiving by increasing the perceived difficulty of accessing support services, such as consultations, services, and support; causing distress feelings in the caregiver, such as, anxiety and worry; increasing the needs and symptoms of the person cared for; and increasing the degree of isolation, for both, the informal caregiver and the person cared for.
Subject(s)
COVID-19 , Caregivers , Humans , Female , Adult , Middle Aged , Aged , Aged, 80 and over , Male , Caregivers/psychology , Quality of Life , Pandemics , COVID-19/epidemiology , Public PolicyABSTRACT
OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.
Subject(s)
COVID-19 , Neoplasms , Humans , Caregivers/psychology , Pandemics , Neoplasms/therapy , Neoplasms/psychology , Information ServicesABSTRACT
ABSTRACTIn this paper, we explored how vulnerable, immunocompromised groups and caregivers of the elderly experienced and perceived the onset of the Covid-19 pandemic in South Africa. Semi-structured interviews were conducted remotely between the 5th andthe 18th of April 2020 in the three South African provinces hardest hit by Covid-19, namely Gauteng, KwaZulu-Natal and the Western Cape. In total, 60 qualitative key informant interviews and one focus group discussion were conducted. Study participants expressed concerns for elderly people and people with underlying health conditions because of their increased vulnerability to Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2). People living with HIV expressed an increased fear of infection following the advent of the Covid-19 pandemic in South Africa. The sidelining of healthcare services and stock-outs of medication proved to be an added concern in particular for vulnerable and immunocompromised groups. Overall, the data suggest that the fear of infection is ubiquitous for people who live in unstable environments such as overcrowded townships and informal settlements. Given the increased fears of infection brought on by the Covid-19 pandemic, the mental health of vulnerable communities and those caring for them becomes an added burden for people living in unstable environments.
Subject(s)
COVID-19 , HIV Infections , Humans , Aged , Caregivers/psychology , HIV Infections/epidemiology , HIV Infections/psychology , South Africa/epidemiology , Pandemics , SARS-CoV-2ABSTRACT
Background: The implementation of quarantine and social distancing measures to control the COVID-19 pandemic led to restrictions at the community level and most of in-person psychiatric services were discontinued. This situation could affect the psychopathology of the patients and the burden of their caregivers. The aim of this study was to investigate the effects of COVID-19 pandemic on people with severe mental illnesses (SMIs) and their caregivers' burden. Method: The study sample consisted of 86 patients with severe mental illness and 86 caregivers. The mental status, relapse rate, and rehospitalization rate of the patients and the general health status and burden of caregivers were investigated in three waves, including before and 3 and 6 months after the COVID-19 pandemic. Results: The relapse rate of the patients was 14%, 33.7%, and 43% (p = 0.000) and the rehospitalization rate was 4.7%, 7%, and 10.5% in waves 0, 1, and 2, respectively (p = 0.000). Most of the psychopathological scales increased in three waves (p = 0.000). The caregivers' burden and health condition worsened during the nine months of the study as well (p = 0.000). Conclusion: The COVID-19 pandemic led to the exacerbation of symptoms and increased the relapse rate in people with SMIs. It also worsened the caregivers' condition. People with severe mental illnesses (SMIs) and their caregivers are one of the most vulnerable groups on which the COVID-19 pandemic had a marked negative effect.
Subject(s)
COVID-19 , Mental Disorders , Humans , Caregivers/psychology , Pandemics , Cost of Illness , Chronic DiseaseABSTRACT
Background: Families of individuals hospitalized in an intensive care unit (ICU) with severe illnesses, such as COVID-19, are experiencing a range of physical and emotional stressors. Identifying the challenges faced by family members and providing support to loved ones battling life-threatening diseases can lead to improved treatment and care for the said family members in a healthcare setting. Aim: The current study was conducted to explore and understand the experiences of family caregivers caring for their loved ones battling COVID-19 in an ICU. Methods: This descriptive qualitative study was conducted from January 2021 to February 2022, based on the experiences of 12 family caregivers of patients with COVID-19 hospitalized in the ICU. Data collection was conducted through purposeful sampling using semi-structured interviews. MAXQDA10 software was used for data management, and conventional content analysis was used for qualitative data analysis. Results: The present study conducted interviews with caregivers to understand their experiences while caring for a loved one in an ICU. Three main themes emerged from the analysis of these interviews: hardship of care trajectory, pre-loss mourning, and contributing factors in resolving family health crises. The first theme, the hardship of care trajectories, encompasses categories such as immersion in the unknown, lack of care facilities, negligence in care, neglect of families by healthcare providers, self-ignorance, and perceived stigma. The second these was pre-loss mourning that included some categories such as emotional and psychological turmoil, witnessing the exhaustion of loved ones, separation suffering, the fearing of loss, anticipatory grief, blame related to the disease causative agents, and perceived helplessness and despair. The third theme was contributing factors in resolving family health crises that included categories of the critical role of family caregivers in health engagement, the role of healthcare professionals in health engagement, and the role of interpersonal factors in health engagement. A total of 80 subcategories were also obtained based on the experiences of the family caregivers. Conclusion: This study's findings indicate that families can play an important role in resolving their loved ones' health problems in life-threatening situations such as the COVID-19 pandemic. Moreover, healthcare providers must recognize and prioritize family-based care and trust the families' ability to effectively manage health crises. Healthcare providers should also be attentive to the needs of both the patient and their family members.