Living with autism in the pandemic era - how the health crisis affected the disability welfare policy in the region of lesser Poland

Our chapter focuses on the situation of children and adolescents with autism spectrum disorders (ASD) and their families in the context of the COVID-19 pandemic. We present the results of a qualitative study aimed at outlining the state of policies dedicated to individuals with ASD prior to and during the global health crisis. We conducted desk research based on documents published by third sector organisations dedicated to individuals with ASD and categorised in our study as epistemic communities. Next, we carried out interviews with parents and professionals on the social practices of supporting children and adolescents with ASD during the period of the COVID-19 pandemic in the region of Lesser Poland [PL: Małopolska]. The discourse of NGOs enabled us to identify the greatest challenges of individuals with ASD and their families and solutions introduced prior to and during the pandemic. Based on the accounts of parents and professionals, we found that as many as every single person with ASD struggled with the epidemic in an individual manner, ceasing pre-pandemic habits, adapting to the new school context, and missing contacts with peers were the major difficulties. © 2023 Anna Prokop-Dorner, Natalia Ozegalska-Łukasik and Maria Światkiewicz-Mósny. All rights reserved.

Should Cash Subsidy Be Offered to Family Caregivers for the Elderly? The Case of Hong Kong.

Hong Kong's Covid-19 epidemic circumstances have given us a valuable opportunity to reflect on Hong Kong's elderly care policies. This essay argues that Hong Kong should learn from the West and provide a subsidy to family caregivers for proper elderly care. We rebut the social and moralistic reasons for not introducing such a subsidy in Hong Kong. We indicate that providing cash subsidy to family caregivers does not monetize or tarnish Confucian filial obligation to take care of elderly people, but enable adult children from low-income families to undertake this obligation effectively. In addition, we contend that providing such a subsidy would not significantly affect the job market in Hong Kong and that incurred financial and manpower costs for monitoring family care are controllable.

School nursing: New ways of working with children and young people during the Covid-19 pandemic: A scoping review.

AIM: To examine how school nurse practice evolved as a result of the Covid-19 pandemic. DESIGN: A scoping review of international literature, conducted and reported in line with Arksey and O'Malley's (2005) framework. DATA SOURCES: Searches were conducted in September 2021. Ten databases were searched: The British Nursing Database, CINAHL, Cochrane Library, Consumer Health Database, Health and Medicine, Nursing and Allied Health, Public Health, PsycINFO, PubMed and Web of Science. Relevant grey literature was identified through hand searching. REVIEW METHODS: A minimum of three reviewers independently screened articles and two reviewers independently undertook data extraction, with any decisions made collaboratively with the wider team. Much of the literature was not empirical work and so it was not possible to apply a traditional quality appraisal framework. RESULTS: Searches identified 554 papers (after deduplication) which were screened against title and abstract. Following the full-text review, 38 articles underwent data extraction and analysis. The review findings highlighted that school nurses adapted their practice to ensure they were able to continue providing their formal and informal school health offer to children, young people and their families and continued working closely with the multidisciplinary team. In addition, the expanded public health role generated by Covid-19 for school nurses' work was considerable, multi-layered and added to their routine workload. School nurses displayed resilience, adaptability and creativity in their response to delivering services during Covid-19. CONCLUSION: School nurses took on a leading public health role during the Covid-19 pandemic. Some developments and practices were highlighted as beneficial to continue beyond the pandemic. However, formal evaluation is needed to identify which practices may merit integration into routine practice. Continued investment in staff and infrastructure will be essential to ensuring school nurses continue to expand their practice and influence as public health experts.

Efforts of a Psychiatric Liaison Team in a ward with patients with severe coronavirus disease 2019.

The rapid increase in inpatients during the coronavirus disease 2019 (COVID-19) pandemic acutely increased the workload of physicians and nurses caring for severely ill patients. Moreover, family visits were restricted for infection control purposes, and family members were unable to be briefed regarding a patient's condition because they tested positive or they had been in close contact with an infectious patient, thus increasing the burden on the patient's family and the medical staff. Therefore, our psychiatric liaison team intervened by attending briefing sessions for family members and online patient visits while also conducting sessions to provide information about mental health and relaxation sessions for the hospital's nurses to reduce their burden as much as possible. These efforts provided mental support for the patients' families while also reducing the challenges of and the burden on medical staff. If the number of severely ill patients increases rapidly and the burden on patients' families and medical staff increases, then we hope that these efforts will help to provide better psychological support to both families and staff.

Social support among persons with depressive disorders during COVID-19 pandemic.

Context: The extent of depressive disorders is wide in the Indian population as reported by epidemiological studies, warranting a necessary area of intervention to cover the rampant treatment gap. Social support is known to vary as per the community-level changes, which may be attributed to events kickstarted by COVID-19. Objectives: This study aimed to assess the social support among persons with depressive disorders. Methods: This was a cross-sectional study conducted among 75 individuals of age ranging from 18 to 46 years from multi-ethnic communities across India. We used the Beck Depression Inventory-II and Multidimensional Scale of Perceived Social Support. Results: This sample had a mean age of 32 years (SD: 7.88 years), and recurrent depressive disorder was the larger prevalent psychopathology diagnosed during their routine clinical consultation in the hospital (69.3%). The majority of the respondents experienced moderate depression (n = 42), followed by mild depression (n = 14) and severe depression (n = 5). Social support and resilience were found to be mildly correlated with each other for persons with mild depression (r = 0.620; P = 0.018). Conclusion: Persons with mild depressive features may benefit from low-cost and community-based interventions directed to enhance social support and thus impact resilience. Psychosocial interventions must address the impact of moderate depression and recurrent depressive disorder and include social support at all spousal, family, and societal levels.

The lived experiences of family members who visit their relatives in Covid-19 intensive care unit for the first time: A phenomenological study.

BACKGROUND: COVID-19 patient experiences in the intensive care unit (ICU) are marked by family separation. Families understand the importance of isolation and hospital visiting policies, but they consider it necessary to visit their loved ones and use personal protective equipment. OBJECTIVE: To describe the lived experiences of family members in their first contact with a relative in a COVID-ICU. METHODS: A phenomenological study was conducted using Cohen's method. The subjects were interviewed using an open-question format to allow them full freedom of expression. Twelve family members were recruited between February and March 2021. RESULTS: Analysis of the qualitative data resulted in five major themes: (1) fear of contagion related to donning/doffing procedures, (2) positive emotions related to first contact with the hospitalized relative, (3) concern for the emotional state of the hospitalized relative, (4) impact of the COVID-ICU and comparisons between imagination and reality regarding the severity of the disease, and (5) recognition of and gratitude toward healthcare professionals. CONCLUSIONS: It has been confirmed that visits to the ICU reduce anxiety among family members. Our findings constitute an internationally relevant contribution to understanding of the needs of relatives who meet loved ones for the first time while wearing personal protective equipment.

'No one was clapping for us': care, social justice and family carer wellbeing during the COVID-19 pandemic in Wales

The inequalities laid bare by the COVID-19 pandemic have had particular implications for the wellbeing of family carers. This article considers these impacts from a social justice perspective, drawing on elements of the ethics of care and the capabilities approach, as well as findings from interviews with 30 family carers in Wales, UK, during the initial months of 'lockdown' in 2020. In the interviews, key themes emerged around the sense of loss, poorer outcomes, 'caring solidarity' and its absence, and concerns about the dominant discourse on care. Although rooted in the specifics of the pandemic experience, all have wider implications for how we understand wellbeing itself, and, in particular, its application to questions of social justice. We argue for the value of an extended conception of wellbeing - one that avoids the individualistic tendencies of some accounts and incorporates the importance of relationality and extrinsic material factors.

The Psychological Impact of COVID-19 among Women Accessing Family Care Centers during Pregnancy and the Postnatal Period in Italy.

There has been concern about the impact of the COVID-19 outbreak on women's mental health during the perinatal period. We conducted a cross-sectional web-based study aimed at evaluating the psychological impact (BSI-18) of the COVID-19 pandemic on this population and collecting information on the perinatal experiences (COPE-IS) during the second Italian wave. Overall, 1168 pregnant women, and 940 within the first six months after childbirth, were recruited in selected Italian Family Care Centers from October 2020 to May 2021. The prevalence of psychological distress symptoms during pregnancy was 12.1% and 9.3% in the postnatal group. Financial difficulties, a previous mood or anxiety disorder and lack of perceived social support and of support provided by health professionals were associated to psychological distress symptoms in both groups. A third of the women felt unsupported by their social network; 61.7% of the pregnant women experienced changes in antenatal care; 21.2% of those in the postnatal period gave birth alone; more than 80% of the participants identified access to medical and mental health care and self-help as important resources in the present context. Health services should assure enhanced support to the most vulnerable women who face the perinatal period during the pandemic.

Caring for a person with dementia during the COVID-19 pandemic: a qualitative study with family care-givers

The aim of this study was to explore the experience of family care-givers of people with dementia during the COVID-19 pandemic in the Veneto region of Italy to understand how and to what extent the emergency has affected care-givers' lives and care routines. Twenty adult children of an ill person were interviewed via phone and video call, in adherence with the restrictions against COVID-19. Thematic analysis showed five main themes: the care-giver's experience, the care recipient's experience, relationships with care recipients, changes in the care routine and resources. Results pointed out that the time needed in the care routine and everyday activities increased during the pandemic, together with the need to find alternatives to physical activity at home. Depending on one's personal experience of COVID-19 and approach to preventive rules, the availability of resources, and formal and informal support, three main approaches to care were identified: apprehensive, mindful and fatalistic ones. The pandemic amplified the differences among these already-existing approaches to care as well as the typical challenges and difficulties experienced by family care-givers, and it resulted in an increased burden connected to practical difficulties, emotional stress and difficulties in reaching for help. These results underline the importance of strengthening the external support network for older people to help family care-givers, especially during emergencies.

Family Care, Economic Stress, and Depressive Symptoms Among Chinese Adults During the COVID-19 Outbreak: Difference by Urban and Rural Areas.

Background: Although several studies have shown an association of family care with a high level of depressive symptoms, the relationship between them remains indistinguishable. Objective: This study aims to examine the associations between family care, economic stress, and depressive symptoms among Chinese adults in urban and rural areas during the COVID-19 outbreak. Methods: Based on cross-sectional data collected through online surveys from February 1st to 10th 2020 in China the present study recruited 2,858 adults. It used multiple linear regression to examine the association between family care and depressive symptoms, while economic stress was examined as moderators on the above relationship. Results: The results showed that caring for both the elderly and children was significantly associated with higher depressive symptoms compared with non-caregivers (B = 2.584, 95%CI: 1.254, 3.915), and a similar result was also found in urban areas. Also, caring for the elderly only was also had a higher level of depressive symptoms than non-caregivers in rural areas (B = 3.135, 95%CI: 0.745, 5.525). Meeting the care needs was significantly associated with lower depressive symptoms compared with unmet care needs, while for rural caregivers, the results were not significant. Besides, economic stress strengthened the effect of family care needs on depressive symptoms for sandwich-generation caregivers who provide care to both the elderly and children (B = 0.605, 95%CI: 0.077, 1.134). While in rural areas, the moderation effects of economic stress were only found for elderly caregivers (B = 1.106, 95%CI: 0.178, 2.035). Conclusion: These findings suggest that we should pay more attention to the family caregiver's mental health during the COVID-19 outbreak. In addition, more effective policies should be developed to provide financial support for family caregivers, especially for sandwich-generation caregivers and rural elderly caregivers.

The lived experiences of family members of Covid-19 patients admitted to intensive care unit: A phenomenological study.

INTRODUCTION: The family members of a patient admitted to a COVID Intensive Care Unit (COVID-ICU) could not communicate with and stay close to their loved one, which resulted in them becoming dependent on hospital staff for remote updates. OBJECTIVE: To describe the lived experiences of families with a member admitted to a COVID-ICU. METHODS: A phenomenological study was conducted. The subjects were interviewed with open-ended questions to allow them full freedom of expression. The researchers involved in the analysis immersed themselves in the data, independently reading and rereading the transcripts to gain a sense of the entire dataset. RESULTS: Fourteen first-degree family members were recruited. Five main themes emerged: fear, detachment, life on standby, family-related loneliness in the COVID-ICU, and an unexpected event. CONCLUSIONS: Knowing the experience of families who have a relative in the COVID-ICU is essential for recognizing and reducing the risk of developing symptoms of post-intensive care syndrome.

Using an ICU Diary to Communicate With Family Members of COVID-19 Patients in ICU: A Case Report.

Visitation restrictions for family members are problematic in intensive care management due to the COVID-19 pandemic. We analyzed the usefulness of an intensive care unit (ICU) diary about the experiences of family members of critical COVID-19 patients. Four family members of 2 COVID-19 patients participated in this report. Both patients were transferred to our ICU after 2 weeks of treatment at another ICU. An ICU diary was given to their family members post-transfer. The family members were interviewed before and after the patients' discharge; the recorded interviews were analyzed and categorized into several clusters using a text mining method. Five categories regarding their anxious feelings were classified before the use of the ICU diary, and 3 categories were based on their positive feelings after the use of the ICU diary. Intensive care unit diaries may be beneficial for disclosing patients' information when visitation restrictions are exercised due to the COVID-19 pandemic.

"It's Like Juggling, Constantly Trying to Keep All Balls in the Air": A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults.

Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers' support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study's advisory board. Data were analyzed using inductive and deductive thematic analysis. Six themes related to working caregivers' needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers' health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed.

COVID-19: Implications for the Support of People with Social Care Needs in England.

This perspective examines the challenge posed by COVID-19 for social care services in England and describes responses to this challenge. People with social care needs experience increased risks of death and deteriorating physical and mental health with COVID-19. Social isolation introduced to reduce COVID-19 transmission may adversely affect well-being. While the need for social care rises, the ability of families and social care staff to provide support is reduced by illness and quarantine, implying reductions in staffing levels. Consequently, COVID-19 could seriously threaten care availability and quality. The government has sought volunteers to work in health and social care to help address the threat posed by staff shortages at a time of rising need, and the call has achieved an excellent response. The government has also removed some barriers to effective coordination between health and social care, while introducing measures to promote the financial viability of care providers. The pandemic presents unprecedented challenges that require well-co-coordinated responses across central and local government, health services, and non-government sectors.