Exploring the impact of COVID-19 pandemic lockdown on informal settlements in Tshwane Gauteng Province,South Africa

ABSTRACT

Informal settlements remain a public health problem as they lack basic infrastructure. Furthermore, it is challenging to enforce public health regulations and protocols to prevent the spread of infection during a pandemic. This paper was set out to explore the impact of lockdown during COVID-19 among people living in informal settlements. An exploratory qualitative design was utilised. Purposive sampling was used to select research participants. In-depth one-to-one interviews were held involving 30 research participants through a WhatsApp online telephone platform. A thematic approach underpinned by the four stages of data analysis in interpretive phenomenological analysis was utilised to analyse the data. The study found that during the the research participants were affected by lack of space to practice social distancing, over-burdened infrastructure, lack of savings, loss of income and shortage of food, hunger and diseases, anxiety and depression and poor access to education. There is a need to prioritise the needs of informal settlers and endeavour to establish permanent homes. Health promotion and communication initiatives and pandemic awareness programmes are needed to mitigate the impact of lockdown during a pandemic in informal settlements.     

Gender differences in informal caring

Men have hitherto largely been invisible in research on informal care. This paper examines gender differences in informal caring, focusing on gender differences according to the relationship between the carer and care-recipient and the location of caring. The paper uses secondary analysis of the 1990–91 General Household Survey, which identified over 2700 adults as informal carers. Four per cent of men and women provide care for someone living in the same household. More women than men, 13% compared with 10%, provide care for someone living in another household. Men carers are less involved in care provision than women, providing fewer hours of care each week, and are less likely to be the main carer. However, gender differences are most marked among married carers, apart from those caring for their spouse, and least among unmarried carers. Married men can often rely on their wives to perform caring roles rather than performing them personally. Women carers are more likely to provide personal care than men carers, but the gender difference is least among those caring for their spouse or for disabled children. Cross-sex personal care is performed within the marital relationship and by parents caring for disabled children, but seldom by adult children caring for their parents or in more distant caring relationships. Evidence of cross-sex taboos in giving personal care is largely restricted to care provided in another household. Since the majority of elderly people in need of care are women, such cultural taboos may reinforce the pressure on mid-life women to care for mothers and mothers-in-law.     

Caring for a parent with pulmonary fibrosis in Malta: The lived experiences of daughters in mid-adulthood

Idiopathic pulmonary fibrosis is a progressive fibrotic lung disease that is on the rise globally. The disease is associated with significant morbidity and hence poses significant challenges for their informal carers, particularly daughters in mid-adulthood, who struggle with their own personal demands and that of their ill parents. Yet there is a dearth of literature on the experiences of these specific carers. Hence, the purpose of this study is to explore the lived experiences of daughters caring for a parent with pulmonary fibrosis within a community setting. This was explored using a phenomenological qualitative framework that was conducted between January and April 2017. Semi-structured audio-recorded interviews were conducted with six adult daughters who provided care to a parent having pulmonary fibrosis. Purposive sampling was used to recruit study participants. Transcribed data were analysed using Interpretative Phenomenological Analysis. Three main themes were extracted which communicate the essence of the daughters’ lived experiences: “Walking on tiptoes”, “Flooded by emotions” and “Shifts in family dynamics.” Participants described experiencing the toll of being constantly vigilant for symptoms. They also expressed a range of emotions that included guilt, helplessness and worry related to their care experience. However, these emotional struggles were suppressed in order to present an external facade of strength and control. A shift in roles was also described where the daughters became the informal carers/support for both their ill and well parent, albeit in different ways. Caring for a person with pulmonary fibrosis is an emotional and life changing experience and hence, there is the need for individualised interventions that target the unique perceptions of these informal carers.     

Burden of Providing Informal Care for Patients with Atrial Fibrillation

ObjectivesPatients with atrial fibrillation (AF) have rapid and irregular heart rates, increasing the risk of comorbidities and mortality. Next to formal medical care, many patients receive informal care from their social environment. The objective of this study was to examine the well-being and economic burden of providing informal care to patients with AF in the UK, Italy, and Germany.MethodsCaregivers of patients with AF completed an online survey based on the iMTA Valuation of Informal Care Questionnaire, with questions about their caregiving situation, perceived burden of caregiving, and absence from work due to health problems resulting from caregiving. Care-related quality-of-life utilities were calculated using the Care-related Quality of Life instrument and associated tariffs. Societal costs of caregiving were calculated based on the proxy good method.ResultsA total of 585 caregivers participated in this study. On average, caregivers provided 33 hours of informal care per week to patients (SD 29 hours). On a scale from 0 to 10, their self-rated burden was 5.4. The average Care-related Quality of Life utility was 72. Caregivers primarily indicated problems with daily activities, mental health, and physical health. Still, the vast majority of caregivers (87%) derived fulfillment from providing care. Weekly societal costs of caregiving were on average €636. Comorbidities contributed substantially to the caregiver time and burden.ConclusionsCaring for a patient with AF is associated with substantial objective and subjective burden, but also provides fulfillment from being able to care for a loved one.     

Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis

ObjectivesTo explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs.DesignCross-sectional study using pooled data from 3 mortality follow-back surveys.Setting and ParticipantsPeople who died with dementia.MethodsThe Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs.ResultsA total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs.Conclusions and ImplicationsTotal care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.     

What attracts and sustain urban poor to informal healthcare practitioners? A study on practitioners' perspectives and patients' experiences in an Indian city

The practice of allopathic medicine by informal healthcare practitioners (IHPs) is ubiquitous in India. However, a little is known about the patients' experiences and IHPs' perspectives. The core questions guided the present study were (1) why do urban poor approach IHPs for healthcare? (2) what are their experiences of availing services from IHPs? and (3) what are the perspectives of IHPs about their practice with the population they serve? A qualitative research design guided the study. The study was conducted in the Gurugram city of Haryana, India. Nine IHPs and twenty‐seven patients who fit into the pre‐established inclusion criteria were interviewed. The findings of the study underline the structural constrains of healthcare access to the poor in India and the mutual dependencies between IHPs and the urban poor. Three themes were emerged corresponding to the perspectives of IHPs, and five themes were generated, which describes patients' experiences and perspectives of availing treatment. The factors that attract and sustain patients to IHPs are a mixture of socio‐economic aspects, which include poverty, inaccessibility, unaffordability, inefficient public healthcare facilities, and the positive behavioural and treatment attributes of the practitioners. The study implies urgent policy interventions to ensure quality healthcare to urban poor.     

Informal caregiving for frail older people at home and in long-term care institutions: who are the key supporters?

This paper describes the extent of the informal caregiving unit for older people who are physically or mentally frail living in private households or resident in long-term care institutions using cross-sectional analysis of survey data. A total of 1444 people aged 65 years or more registered with a general practitioner (GP) in four areas in England and, consenting to the study, were screened for mental or physical frailty. Of 1127 older subjects living at home 7% reported receiving no informal support, 15% had a paid supporter only and 78% nominated a key informal supporter who helped with defined activities of daily living of whom 650 (74%) were interviewed. Only 13% nominated more than one informal supporter. Key supporters were spouses (38%), daughters (30%), sons (9%), daughters-in-law (4%), other relatives (11%) and friends and neighbours (8%). Of 317 frail older people resident in long-term care institutions 175 (55%) received a main visitor at least once a week of whom 132 (75%) were interviewed. Main visitors were spouses (11%), daughters (36%), sons (23%), daughters-in-law (2%), other relatives (24%) and friends (4%). Qureshi & Walker's (1989) hierarchical, decision-making model for selecting informal caregivers was applied to the data and correctly identified 85% of key informal supporters and 79% of main visitors interviewed. This large-scale comprehensive survey of informal care for frail older people supports earlier small-scale localized studies highlighting the key role of spouses and daughters in the provision of informal support. Families of frail older people provide the support to maintain people at home.