Companionship for women/birthing people using antenatal and intrapartum care in England during COVID-19: a mixed-methods analysis of national and organisational responses and perspectives

ObjectivesTo explore stakeholders’ and national organisational perspectives on companionship for women/birthing people using antenatal and intrapartum care in England during COVID-19, as part of the Achieving Safe and Personalised maternity care In Response to Epidemics (ASPIRE) COVID-19 UK study.SettingMaternity care provision in England.ParticipantsInterviews were held with 26 national governmental, professional and service-user organisation leads (July–December 2020). Other data included public-facing outputs logged from 25 maternity Trusts (September/October 2020) and data extracted from 78 documents from eight key governmental, professional and service-user organisations that informed national maternity care guidance and policy (February–December 2020).ResultsSix themes emerged: ‘Postcode lottery of care’ highlights variations in companionship and visiting practices between trusts/locations, ‘Confusion and stress around ‘rules’’ relates to a lack of and variable information concerning companionship/visiting, ‘Unintended consequences’ concerns the negative impacts of restricted companionship or visiting on women/birthing people and staff, ‘Need for flexibility’ highlights concerns about applying companionship and visiting policies irrespective of need, ‘‘Acceptable’ time for support’ highlights variations in when and if companionship was ‘allowed’ antenatally and intrapartum and ‘Loss of human rights for gain in infection control’ emphasises how a predominant focus on infection control was at a cost to psychological safety and human rights.ConclusionsPolicies concerning companionship and visiting have been inconsistently applied within English maternity services during the COVID-19 pandemic. In some cases, policies were not justified by the level of risk, and were applied indiscriminately regardless of need. There is an urgent need to determine how to sensitively and flexibly balance risks and benefits and optimise outcomes during the current and future crisis situations.

Home care professionals’ views on working conditions during the COVID-19 pandemic: the case of Ireland

This article examines home care professionals’ views on working conditions during the COVID-19 pandemic. In particular, it identifies similarities and differences between private, public and non-profit providers. The article seeks to shed light on the impacts of marketisation/privatisation on working conditions during the pandemic. Statistical tests on 350 questionnaires received from care workers in Ireland demonstrate the difficult working conditions during COVID-19 and variations by type of employer. We discuss an apparent ‘return of the state’ in home care provision during the pandemic, which may have dampened differences between types of providers.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis

Background: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. Aims: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. Design: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Data Sources: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Findings: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. Conclusions: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Sâkipakâwin: Assessing Indigenous Cancer Supports in Saskatchewan Using a Strength-Based Approach

Given that the health care system for Indigenous people tends to be complex, fragmented, and multi-jurisdictional, their cancer experiences may be especially difficult. This needs assessment study examined system-level barriers and community strengths regarding cancer care experiences of Indigenous people in Saskatchewan. Guided by an advisory committee including Indigenous patient and family partners, we conducted key informant interviews with senior Saskatchewan health care administrators and Indigenous leaders to identify supports and barriers. A sharing circle with patients, survivors, and family members was used to gather cancer journey experiences from Indigenous communities from northern Saskatchewan. Analyses were presented to the committee for recommendations. Key informants identified cancer support barriers including access to care, coordination of care, a lack of culturally relevant health care provision, and education. Sharing circle participants discussed strengths and protective factors such as kinship, connection to culture, and spirituality. Indigenous patient navigation, inter-organization collaboration, and community relationship building were recommended to ameliorate barriers and bolster strengths. Recognizing barriers to access, coordination, culturally relevant health care provision, and education can further champion community strengths and protective factors and frame effective cancer care strategies and equitable cancer care for Indigenous people in Saskatchewan.

A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

Purpose The purpose of this study is to explore the psychosocial aspects of palliative care provision for incarcerated persons drawing on a human rights perspective. Design/methodology/approach Seven databases were searched to identify empirical studies published from 2010 to 2020. Articles included were qualitative, quantitative, mixed methods, written in English and with westernised health/prison settings, with a key focus on the psychosocial aspects of palliative care provision and human rights. The quality of the articles was appraised using the Mixed Methods Assessment Tool (2018). Findings The results from 26 articles revealed multiple models of care, with the US prison hospice program depicted as optimal, because of the use of trained incarcerated caregivers, working as aides to the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to adequate psychosocial care were negative public discourse, prison processes and resources, provider attitudes and the incarcerated person’s level of knowledge and trust. Identified facilitators were related to incarcerated persons’ caregiving programs, a sense of purpose and visitation leniency. Human rights principles were identified in studies that featured compassionate release and advance care planning. Research limitations/implications There is inconsistency in the literature regarding what constitutes psychosocial care, which meant that the authors needed to draw on multiple literature sources to formulate a definition. Additionally, the review only included studies written in English, meaning some high-quality studies could have been missed. The articles that conducted interviews with incarcerated individuals were undertaken in male prisons only and not female prisons. Practical implications Understanding the importance of psychosocial care for incarcerated persons with a life-limiting illness requires a shift in negative public discourse and the need for a stronger human rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however, countries such as Australia are yet to contribute to this knowledge base. Originality/value If palliative care is a human right, then its philosophy should be considered in its entirety, with the inclusion of psychosocial care.

Socioeconomic differences in informal caregiving in Europe

Disclosing socioeconomic differences in informal care provision is increasingly important in aging societies as it helps to identify the segments of the population that may need targeted support and the types of national investments to support family caregivers. This study examines the association between individual-level socioeconomic status and informal care provision within the household. We also examine the role of contextual factors, income inequality, and the generosity of social spending, to identify how macro-level socioeconomic resource structures shape individuals’ provision of care to household members. We use pooled data from the Survey of Health, Ageing and Retirement in Europe (SHARE, waves 1, 2, 4, 5, 6) and the English Longitudinal Study of Ageing (ELSA, waves 2, 3, 4, 6, 7). Poisson regression multilevel models estimate the associations between household socioeconomic status (education, income, and wealth), and country socioeconomic resources (income inequality and social spending as a percentage of GDP), and the likelihood of older adults’ informal care provision within the household. Results indicate that lower individual socioeconomic resources—education, income, and wealth—were associated with a higher incidence of older adults’ informal care provision within the household. At the macro-level, income inequality was positively associated while social spending was negatively associated with older adults’ care provision within the household. Our findings suggest that socioeconomically disadvantaged groups are more likely to provide informal care, which may reinforce socioeconomic inequalities. At the national level, more equitable resource distribution and social spending may reduce intensive family caregiving.

Intergenerational Caregiving Patterns, Living Arrangements, and Life Satisfaction of Adults in Mid and Later Life in China

While the health implications of intergenerational caregiving have been broadly investigated in the aging literature, less is known about caregivers in four-generation families and their living arrangements. Using 2011 and 2013 waves of China Health and Retirement Longitudinal Study ( N = 12,914 obs.), we document enhanced life satisfaction of grandchild caregivers and sandwich caregivers caring for both grandchildren and parents than non-caregivers. When further taking living arrangements into consideration, we find that parent caregivers also benefit from care provision when not living with their parents and sandwich caregivers only have an advantage when co-residing with care recipients with adult children present in households. By contrast, grandchild caregivers living with grandchildren show substantially higher life satisfaction no matter adult children are present or not. The subgroup comparison suggests that females and rural residents enjoy psychological advantages over their male counterparts and urban counterparts in grandparenting within skipped-generation households and sandwich caregiving.

Informal Care Provision and the Reduction of Economic Activity Among Mid-Life Carers in Great Britain – A Mixed-Methods Approach

Informal care provision is an integral part of the long-term care system. However, it has been shown to have negative effects on the carers’ economic activity, and understanding the mechanisms behind this is crucial for social policy design. This study provides new insight into mid-life carers’ decisions to reduce their economic activity through a convergent mixed-methods design. Quantitative analysis of a sample of 2,233 carers aged fifty from the National Child Development Study (NCDS) Wave 8 with follow up at age fifty-five, and qualitative analysis of in-depth interviews of forty-eight carers between 2008-2010, were used. The combined results indicate that being female, single never married, having financial issues, being an employee, and frequently meeting a parent are associated with economic activity reduction; the carers’ own perspectives further elucidate key factors, such as their value and identity, family structure, life course events, and care intensity, which affect their decisions.

Effects of the COVID-19 pandemic on patients with inflammatory joint diseases in Sweden: from infection severity to impact on care provision

ObjectivesTo compare risks for COVID-19-related outcomes in inflammatory joint diseases (IJDs) and across disease-modifying antirheumatic drugs (DMARDs) during the first two waves of the pandemic and to assess effects of the pandemic on rheumatology care provision.MethodsThrough nationwide multiregister linkages and cohort study design, we defined IJD and DMARD use annually in 2015–2020. We assessed absolute and relative risks of hospitalisation or death listing COVID-19. We also assessed the incidence of IJD and among individuals with IJD, rheumatologist visits, DMARD use and incidence of selected comorbidities.ResultsBased on 115 317 patients with IJD in 2020, crude risks of hospitalisation and death listing COVID-19 (0.94% and 0.33% across both waves, respectively) were similar during both waves (adjusted HR versus the general population 1.33, 95% CI 1.23 to 1.43, for hospitalisation listing COVID-19; 1.23, 95% CI 1.08 to 1.40 for death listing COVID-19). Overall, biological disease-modifying antirheumatic drugs (bDMARDs)/targeted synthetic disease-modifying antirheumatic drugs (tsDMARDs) did not increase risks of COVID-19 related hospitalisation (with the exception of a potential signal for JAK inhibitors) or death. During the pandemic, decreases were observed for IJD incidence (−7%), visits to rheumatology units (−16%), DMARD dispensations (+6.5% for bDMARD/tsDMARDs and −8.5% for conventional synthetic DMARDs compared with previous years) and for new comorbid conditions, but several of these changes were part of underlying secular trends.ConclusionsPatients with IJD are at increased risk of serious COVID-19 outcomes, which may partially be explained by medical conditions other than IJD per se. The SARS-CoV-2 pandemic has exerted measurable effects on aspects of rheumatology care provision demonstrated, the future impact of which will need to be assessed.