Re-imagining care in comics: an interview with Susan MacLeod, Simon Grennan, Ernesto Priego and Peter Wilkins

As an existential practice, predicated on human interdependencies and labour, care attains remarkable significance in sustaining the life of the ill/disabled and is an indelible part of families and healthcare. Families, medicine, and institutional caring centres (such as old age homes, hospices among others) justify their commitment to care through emotional and practical/ technical approaches towards illness/disability. COVID-19 pandemic has just made human interdependency and significance of care exceptionally visible through laying bare the inevitable physical and social vulnerabilities. However, in the contemporary neoliberal society that favour autonomy and efficiency, care is overlooked, undermined, undervalued, and often linked with vulnerability and precarity. Graphic caregiving memoirs drawn by caregivers themselves are ideal sites for re-imagining, validating, depicting and reconceptualising experiences of care. In this email interview graphic artists Susan MacLeod, Simon Grennan, Ernesto Priego and Peter Wilkins reflect on care, the wide range of issues concerning its practice and suggest an alternative perspective towards caregiving. In Part A titled Of Comics and Care the authors respond to generic questions about their interest in comics, works, life, among others. In Part B titled What was I expecting? Compassion? Validation? The authors respond to questions related to their respective graphic narratives. [ FROM AUTHOR] Copyright of Journal of Graphic Novels & Comics is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

'Caring beyond capacity' during the COVID-19 pandemic: resilience and family carers of people with dementia from the IDEAL cohort

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study is to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes describe the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

(Re)designing the continuum of care for older adults: The future of long-term care settings

This book broadens the visioning on new care environments that are designed to be inclusive, progressive, and convergent with the needs of an aging population. The contents cover a range of long-term care (LTC) settings in a single collection to address the needs of a wide audience. Due to the recent COVID-19 pandemic, rethinking the spatial design of care facilities in order to prepare for future respiratory and contagious pathogens is one of the prime concerns across the globe, along with social connectedness and autonomy in care settings. This book contributes to the next generation of knowledge and understanding of the growing field of the design of technology, programs, and environments for LTC that are more effective in infection prevention and control as well as social connectedness. To address these issues, the chapters are organized in four sections: Part I: Home- and community-based care;Part II: Facility-based care;Part III: Memory care and end-of-life care;and Part IV: Evidence-based applied projects and next steps. (Re)designing the Continuum of Care for Older Adults is an essential resource for researchers, practitioners, educators, policymakers, and students associated with LTC home and healthcare settings. With diverse topics in theory, substantive issues, and methods, the contributions from notable researchers and scholars cover a range of innovative programming, environments, and technologies which can impact the changing needs and support for older adults and their families across the continuum of care. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Care work in a situation of poverty: the involvement of stakeholders

The aim of this research was to describe the participation of the providers of socially organized care (State, families, market and community) in caregiving tasks among families living in poverty in the province of Buenos Aires, Argentina. The study used a descriptive quantitative design involving surveys conducted virtually in the framework of the COVID-19 pandemic.Families, particularly their female members, faced a notable burden in terms of taking responsibility for and implementing caregiving. It was also observed that there were low levels of State involvement other than through financial transfers, but community organizations did have a presence, particularly in the context of the pandemic and the socioeconomic crisis that exacerbated it. Market-based care provision was restricted to hiring women from the same families as mentioned before to undertake caregiving tasks in households with greater purchasing power.

Caregiving for Older Adults With Dementia During the Time of COVID-19: A Multi-State Exploratory Qualitative Study.

This qualitative semi-structured interview study explores how 64 family caregivers for older adults with Alzheimer's Disease and related dementias across eight states experienced and executed caregiving decisions before and during the COVID-19 pandemic. First, caregivers experienced challenges communicating with loved ones and healthcare workers in all care settings. Second, caregivers displayed resilient coping strategies in adapting to pandemic restrictions, finding novel strategies to balance risks while preserving communication, oversight, and safety. Third, many caregivers modified care arrangements, with some avoiding and others embracing institutional care. Finally, caregivers reflected on the benefits and challenges of pandemic-related innovations. Certain policy changes reduced caregiver burden and could improve care access if made permanent. Telemedicine's increasing use highlights the need for reliable internet access and accommodations for individuals with cognitive deficits. Public policies must pay greater attention to challenges faced by family caregivers, whose labor is both essential and undervalued.

Assessment of psychological distress and quality of life of family caregivers caring for patients with chronic diseases at home.

Introduction: Caring for the chronically ill at home is a particularly demanding process that can place a great burden on the caregiver. International and Greek studies underline and confirm this problem. In addition, family caregivers are not supported by the health systems of the different countries, especially in Greece, where the system relies mainly on the family to care for these patients, which is even more challenging during the Covid-19 pandemic. Aim: The aim of this study is to evaluate the psychological burden of family caregivers of the chronically ill and the outcomes of care for these individuals. It also aims to assess the intensity of burden and changes in quality of life of family caregivers by demographic characteristics. Methods: The sample of the study was a random sample and consisted of 102 family caregivers of chronically ill patients registered in home care of "Metaxa" hospital. The scales (BAKAS/BCOS) and (HADS) were used for data collection. SPSS 25 statistical package was used for statistical analysis of the results. Results: The results of the study, calculated with the BCOS scale, show a low burden (-0.93) of family caregivers, patients with chronic diseases and moderate depression and anxiety. The results of the analysis associate the intensity of family caregiver burden with increased levels of anxiety and depression. The factors that affect burden are gender, with women having higher burden, living with the patient, and low education level. According to the HADS anxiety scale, family caregivers had an average score of 11, indicating a moderate level of anxiety, and for depression, the average score was 10.4, also indicating a moderate level of depression. The results indicate that the state needs to support family caregivers and take immediate action to create structures and implement actions to help families continue in their difficult roles in a pain-free manner.

Developmental Manifestations of Grief in Children and Adolescents: Caregivers as Key Grief Facilitators.

The death of a loved one represents one of the most distressing and potentially traumatic life events in childhood and adolescence. Grief reactions in youth are influenced by ongoing developmental processes and manifest differently depending on the child's age and developmental stage. These grief-related processes unfold within youths' caregiving context, as children and adolescents rely heavily on the adults in their environment to navigate and cope with the death of a loved one. Despite the field's increasing recognition of the potential for maladaptive grief reactions to impede functioning over time, few longitudinal research studies on childhood grief currently exist. In this article, we will (a) provide a brief overview of the childhood bereavement literature; (b) review the new DSM-5 and ICD-11 Prolonged Grief Disorder diagnostic criteria through a developmentally-informed lens; (c) describe how grief reactions manifest in children and adolescents of different ages through the lenses of multidimensional grief theory and relational developmental systems theory; (d) highlight key moderating factors that may influence grief in youth, and (e) discuss a primary moderating factor, the caregiving environment, and the potential mechanisms through which caregivers influence children's grief.

"My Biggest Fear Is She'll Die Alone": Care Partner Perspectives of Institutional COVID-19 Visitor Restrictions in Ontario, Canada.

In March 2020, the Government of Ontario, Canada implemented public health measures, including visitor restrictions in institutional care settings, to protect vulnerable populations, including older adults (> 65 years), against COVID-19 infection. Prior research has shown that visitor restrictions can negatively influence older adults' physical and mental health and can cause increased stress and anxiety for care partners. This study explores the experiences of care partners separated from the person they care for because of institutional visitor restrictions during the COVID-19 pandemic. We interviewed 14 care partners between the ages of 50 and 89; 11 were female. The main themes that emerged were changing public health and infection prevention and control policies, shifting care partner roles as a result of visitor restrictions, resident isolation and deterioration from the care partner perspective, communication challenges, and reflections on the impacts of visitor restrictions. Findings may be used to inform future health policy and system reforms.

Caring Through COVID Findings from a Quality Improvement Project

This multisite quality improvement (QI) project reports on a psychotherapy group for family care partners of persons living with neurodegenerative conditions. Following the plan-do-study-act model, a team of geropsychologists iteratively developed, implemented, and refined the 8-week "Caring Through COVID" psychotherapy group across five cycles from January 2021 to April 2022. Participants were 21 spouses or adult children of persons living with neurodegenerative conditions. Across two clinics, participants evidenced moderate improvements in caregiver burden (d = .59), self-efficacy for caregiving (d = -.64), and self-efficacy for emotion regulation (d = -.60). The group was perceived positively by participants. This QI project demonstrates the real-world implementation of a psychotherapy group developed during the COVID-19 pandemic and refined to remain ongoing.

A Workplace Environmental Scan of Employed Carers During COVID-19.

The carer-employee experience has undergone multiple shifts during the COVID-19 pandemic. This study seeks to understand how changes in the workplace as a result of the pandemic have impacted employed carers with their ability to perform both care obligations and paid work responsibilities. Using an online workplace-wide survey at a large Canadian firm, we conducted an environmental scan of: the current state of workplace supports and accommodations, supervisor attitudes, and carer-employee burden and health. Our findings demonstrate that while employees are generally in good health, care burden and time spent caregiving has been higher during COVID-19. Notably, employee presenteeism is higher during the pandemic than it was previously, with carer-employees experiencing significantly reduced levels of co-worker support. The most common workplace adaptation to COVID-19, work-from-home, was preferred by all employees as it allowed greater schedule control. However, this comes at the cost of reduced communications and sense of workplace culture, especially for carer-employees. We identified several actionable changes within the workplace, including: greater visibility of existing carer resources, and standardized training of managers on carer issues.

Mental health, social integration and support of informal caregivers during the second wave of the COVID-19 pandemic: A population-based representative study from Germany.

INTRODUCTION: The study analyzed mental health, social integration and social support of informal caregivers of individuals aged ≥60 years compared to non-caregivers during the second wave of the COVID-19 pandemic. METHODS: A quantitative, cross-sectional study was conducted with a sample drawn randomly from the nationally representative online panel forsa.omninet in Germany between March 4th and 19th 2021. In total, 3022 adults aged ≥40 years from Germany were questioned, including 489 adults providing informal care for adults aged ≥60 years between December 2020 and March 2021. Depressive (PHQ-9) and anxiety symptoms (GAD-7), loneliness (De Jong Gierveld Scale), social exclusion (Bude & Lantermann Scale) and social network support (Lubben's Social Network Scale) were measured. Adjusted OLS regression analyses and additional moderator analyses (moderators: perceived restrictions and danger of infection due to the COVID-19 pandemic) were conducted. RESULTS: Significant higher levels of depressive and anxiety symptoms and more social support were found among informal caregivers compared to non-caregivers. Loneliness and social exclusion did not differ between both groups. Perceived restrictions by the pandemic significantly moderated the association between informal caregiving and social support - social support was stronger among caregivers with higher levels of perceived restrictions by the pandemic. CONCLUSION: Informal caregivers are faced with worse mental health than non-caregivers during the pandemic, although their social support was stronger, in particular in dependence of higher levels of perceived restrictions by the pandemic. Thus, results indicate a need for an informal-care-specific policy and more professional support for informal caregivers during a health crisis.

Caring for a Relative With Dementia in Long-Term Care During the COVID-19 Pandemic: A Prospective Longitudinal Study.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic introduced unprecedented threats and disruptions for caregivers of people with dementia living in residential long-term care (LTC) facilities. Qualitative and cross-sectional studies have reported substantial negative effects of the pandemic on dementia caregivers' well-being, but little to no prospective research has examined the impact of COVID-19 on caregiver well-being using pre-pandemic assessments. The present study used longitudinal data from an ongoing randomized controlled trial of a psychosocial intervention to support family caregivers whose relatives had entered LTC. Research Design and Methods: Data collection began in 2016 and continued through 2021. Caregivers (N = 132) completed up to 7 assessments measuring their depressive symptoms, self-efficacy, and burden. Results: Latent growth curve models testing preregistered hypotheses revealed no significant effects of the pandemic on caregiver outcomes on average, though caregivers varied in terms of individual intercepts and slopes. Furthermore, factors such as caregiver-care recipient relationship closeness, care recipient's COVID-19 infection status, and caregivers' ratings of LTC facilities' COVID-19 policies did not significantly moderate trajectories of well-being. Discussion and Implications: Findings highlight the heterogeneity of caregivers' experiences during the pandemic, and suggest caution when interpreting cross-sectional findings on the impacts of the COVID-19 pandemic on caregiver well-being and distress.

Family caregiver involvement and role in hospital at home for adults: the patients' and family caregivers' perspective - a Norwegian qualitative study.

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.

Physical activity, sedentary behaviour and quality of life in children with autism: insights from Romania and Greece.

Background: The COVID-19 pandemic has accentuated sedentarism in children, including those with autism. Given the importance of the topic for long-term health, this study aimed to explore the post-pandemic relationship between physical activity, sedentary behaviours and quality of life (QOL) in children with autism from Romania and Greece. Methods: An online questionnaire collected information regarding physical activity levels in children and their parents, children's sedentary behaviours and QOL from 83 Romanian parents (m1age = 40.1; sd1age = 6.37) and 42 Greek parents (m2age = 39.5; sd2age = 5.45) between March and July 2022. Results: Most Greek children (95%) had 2 or 3 weekly hours of physical education at school/kindergarten, while only 64% of Romanian children had the same level of physical education. Romanian parents reported being more active (χ2weekdays= 33.7, df = 3, p < .001; (χ2leisure= 41.8, df = 2, p < .001) than the Greek counterparts. Contrary to expectations, the parents' physical activity did not correlate with the child's physical activity. Sedentary behaviour time was significantly higher in Greek than Romanian children during working days and the weekends. Sedentary behaviour during weekdays predicted the child' QOL. Conclusions: This exploratory study offers insight into Romanian and Greek children's patterns of physical and sedentary activities. The results stress the need to increase physical activity and decrease sedentary behaviours in children with autism from Romania and Greece. The practical implications and limits of this exploratory approach were further discussed.

Caregiving experiences of nurses working in a newly established intensive care unit during the COVID-19 pandemic: A qualitative study.

BACKGROUND: The coronavirus disease 2019 (COVID-19) has adversely affected intensive care nurses; for instance, they have fought against an unknown disease, and their workload has increased. In addition, the COVID-19 pandemic has led intensive care nurses to work in new settings and with new teams. OBJECTIVE: The aim of this study was to explore and describe the caregiving experiences of nurses who were working in a new COVID-19 intensive care unit in Turkey and providing care for patients infected with SARS-CoV-2. METHOD: In this descriptive qualitative study, semi-structured interviews were held from 22 July to 31 August 2020 and were recorded and analysed based on thematic analysis. The researchers followed the COREQ checklist in reporting the study. FINDINGS: From interviews held with 11 nurses, four main themes (uncertainty and challenges in the 'danger zone', emotional and psychosocial changes, professional effects of the pandemic and being ready for a future pandemic) were derived from 11 sub-themes. CONCLUSIONS: The new setting and the ever-changing team make caring for the COVID-19 patient even more difficult. A good organization, an experienced permanent team, a known setting and good working conditions are essential to be prepared for possible pandemics in the future.

The Twelve Ds: An Update to Edwards and Benson's Reasons for Non-Parental Caregiving.

This qualitative study examined the prevalence of the "Nine Ds," a framework developed by Edwards and Benson for understanding the heterogeneity of reasons for which grandparents assume care of grandchildren (i.e., death, disease, detention, divorce, departure, drugs, desertion, delivery, deployment) in a contemporary sample. Using a nationwide sample of custodial grandparents (N = 322) and foster parents (N = 105), caregivers were asked their reason for assuming care of the grandchild or foster child within their care. The results of the study suggest that the Nine Ds are a useful framework, but accounted for only 21.74% of responses, indicating the Nine Ds fail to capture many of the reasons for assuming care. Three new themes-dollars, duty, and daily grind-were identified using semantic thematic analysis and are applicable to both grandfamilies and foster families. These themes represent different motivations for assuming care and provide insight into the social structures that may act as barriers to family formation. This study provides a foundation for future research examining the impact of assumed care by non-parental attachment figures on the health and well-being of both grandchildren and foster children.

Caregiver Experience of Tele-dementia Care for Older Veterans.

BACKGROUND: For the 5 million persons living with dementia (PLWD) in the USA, telemedicine may improve access to specialty care from their homes. OBJECTIVE: To elicit informal caregiver perceptions of tele-dementia care provided during COVID-19. DESIGN: Qualitative, observational study using grounded theory. PARTICIPANTS: Informal caregivers aged 18 + who cared for an older adult who received tele-dementia services at two major VA healthcare systems participated in 30-60-min semi-structured telephone interviews. INTERVENTIONS: Interviews were designed using Fortney's Access to Care model. MAIN MEASURES: Thirty caregivers (mean age = 67, SD = 12, 87% women) were interviewed. KEY RESULTS: Five major themes were (1) Tele-dementia care avoids routine disruption and pre-visit stress; (2) Transportation barriers to in-person visits include not only travel logistics but navigating the sequelae of dementia and comorbid medical conditions. These include cognitive, behavioral, physical, and emotional challenges such as balance issues, incontinence, and agitation in traffic; (3) Tele-dementia care saves time and money and improves access to specialists; (4) Tele-dementia facilitated communication between caregiver and provider without hindering communication between PLWD and provider; and (5) Caregivers described ideal future dementia care as a combination of virtual and in-person modalities with in-home help, financial and medical support, and dementia-sensitive caregiver access. Caregivers interviewed saved 2.6 h ± 1.5 h (range: 0.5 to 6 h) of travel time. Multiple caregivers described disruption of routines as difficult in PLWD and appreciated the limited preparation and immediate return to routine post telemedicine visit as positives. CONCLUSIONS: Caregivers found tele-dementia care convenient, comfortable, stress reducing, timesaving, and highly satisfactory. Caregivers would prefer a combination of in-person and telemedicine visits, with an opportunity to communicate with providers privately. This intervention prioritizes care for older Veterans with dementia who have high care needs and are at higher risk for hospitalization than their same age counterparts without dementia.

Availability and Burden of Family Caregivers in Caring for a Recurrent Stroke Survivor in the Community During a Pandemic

Family caregivers significantly influence the ability of stroke survivors to thrive in the community despite of their disability. Recently, family caregivers are faced with the challenges of fulfilling their domestic duties while acting as the coordinators of medical and nursing care to their patient. Caring for a family member with disability is already a challenging task that may even be magnified by the presence of calamities and state emergencies. This paper examined the burdens and challenges experienced by family caregivers during the COVID-19 threat. This research utilized an illustrative case study approach, which typically focuses on one or two instances of an event to illustrate a phenomenon while highlighting the contextual elements of the case. It was discovered that the emergence of a highly contagious and deadly virus required a major adjustment in the lives of family caregivers caring for family members with disabilities, especially in communities where local transmission is rampant. Despite having local policies that have been set in place to prevent the continuing transmission of new COVID-19 infections, these restrictions highly affected the way of life in the communities and accentuates the lack of community resources for medical emergencies. © 2023 The Authors.

Impacts of the COVID-19 response on populations with chronic conditions and developmental disabilities

People with chronic conditions faced a type of double jeopardy during the COVID-19 pandemic. Their pre-existing health conditions made them more likely to become severely ill-and more likely to be admitted to intensive care, intubated, and die-if infected with SARS-CoV-2, the virus that causes COVID-19. At the same time, access to needed screening, testing, and treatment was often limited due to the cancelation of primary care services by healthcare providers and systems overwhelmed by the need to treat patients with COVID-19. Patients with chronic conditions feared being exposed to COVID-19 while receiving care. The resulting stress, fear, and anxiety made the management of chronic diseases even more difficult. Several subsets of patients with certain medical conditions, including immunodeficiencies and disabilities, were particularly impacted. The COVID-19 pandemic, and the response to it, also impacted support and services available to caregivers and heightened stress, particularly among parents and caregivers. © 2023 The authors.