Informal care in times of a public health crisis: Objective burden, subjective burden and quality of life of caregivers in the Netherlands during the COVID-19 pandemic.

In the Netherlands, about one-third of the adult population provides unpaid care. Providing informal caregiving can be very straining in normal times, but the impact of a public health crisis on caregivers is largely unknown. This study focuses on the question of how caregiver burden changed following the COVID-19 pandemic, and what characteristics were related to these changes. We use self-reported data from a sample of 965 informal caregivers from the Netherlands 3 months into the pandemic to investigate how the objective burden (i.e. hours spent on caregiving) and the subjective burden had changed, and what their care-related quality of life (CarerQol) was. We found that on average the subjective burden had increased slightly (from 4.75 to 5.04 on a 0-10 scale). However, our analysis revealed that some caregivers were more affected than others. Most affected caregivers were women, and those with low income, better physical health, decreased psychological health, childcare responsibilities, longer duration of caregiving and those caring for someone with decreased physical and psychological health. On average, time spent on care remained the same (a median of 15 h per week), but certain groups of caregivers did experience a change, being those caring for people in an institution and for people with a better psychological health before the pandemic. Furthermore, caregivers experiencing changes in objective burden did not have the same characteristics as those experiencing changes in perceived burden and quality of life. This shows that the consequences of a public health crisis on caregivers cannot be captured by a focus on either objective or subjective burden measures or quality of life alone. Long-term care policies aiming to support caregivers to persevere during a future crisis should target caregivers at risk of increased subjective burden and a lower CarerQol, such as women, people with a low income and people with childcare responsibilities. Such policies should consider that reducing objective burden may not necessarily lead to a reduction in subjective burden for all caregivers.

Social Capital as Protection Against the Mental Health Impact of the COVID-19 Pandemic.

The corona pandemic has a huge impact on the mental wellbeing of the Dutch population. Based on a large-scale panel survey (N = 22,696) on the social impact of COVID-19, this article firstly examines which social groups are most susceptible to the mental health consequences of the pandemic. Secondly, we examine whether social capital provides protection against this impact. We find that the mental health impact of COVID-19 is considerable and that it increased over the course of 2020. Women, young people, respondents with low incomes and/or poor self-perceived health, experience relatively more fear and stress due to the pandemic. We do not find a difference between respondents with or without a migration background. Social capital (received support, trust in people and in institutions) has the expected effect: the more support and trust, the less fear and stress. There is a mediation effect. Older people, respondents with high incomes and/or good health experience less fear and stress, partly because they have more social capital. This is different for females. They would experience even more fear and stress, compared to men, were it not for the fact that they have more social capital. Hence we conclude that social capital indeed provides some protection against the negative mental health consequences of COVID-19.

The Participation of Older People in the Concept and Design Phases of Housing in The Netherlands: A Theoretical Overview.

In the Netherlands, there is a growing need for collective housing for older people to bridge the gap between ageing-in-place and institutional care facilities. Participation of older people in the concept and design phases is important to tune the market supply to the needs of (future) residents, yet social entrepreneurs find it challenging to involve older people. This commentary explores various ways older people can participate in the development of new housing initiatives. The ladder of citizen participation is applied to explore different roles that (future) residents could play with levels of influence varying from non-participation to citizen power. Considerations for meaningful participation are discussed, in order to show how collaborations can be formed between (future) residents and decision makers.

Towards Responsible Rebellion: How Founders Deal with Challenges in Establishing and Governing Innovative Living Arrangements for Older People.

In the Netherlands, there is an increasing need for collective forms of housing for older people. Such housing bridges the gap between the extremes of living in an institutionalised setting and remaining in their own house. The demand is related to the closure of many residential care homes and the need for social engagement with other residents. This study focuses on housing initiatives that offer innovative and alternative forms of independent living, which deviate from mainstream housing arrangements. It draws on recent literature on healthcare 'rebels' and further develops the concept of 'rebellion' in the context of housing. The main research question is how founders dealt with challenges of establishing and governing 'rebellious' innovative living arrangements for older people in the highly regulated context of housing and care in the Netherlands. Qualitative in-depth interviews with 17 founders (social entrepreneurs, directors and supervisory board members) were conducted. Founders encountered various obstacles that are often related to governmental and sectoral rules and regulations. Their stories demonstrate the opportunities and constraints of innovative entrepreneurship at the intersection of housing and care. The study concludes with the notion of 'responsible rebellion' and practical lessons about dealing with rules and regulations and creating supportive contexts.

Disruptive life event or reflexive instrument? On the regulation of hospital mergers from a quality of care perspective.

PURPOSE: Despite the continuation of hospital mergers in many western countries, it is uncertain if and how hospital mergers impact the quality of care. This poses challenges for the regulation of mergers. The purpose of this paper is to understand: how regulators and hospitals frame the impact of merging on the quality and safety of care and how hospital mergers might be regulated, given their uncertain impact on quality and safety of care. DESIGN/METHODOLOGY/APPROACH: This paper studies the regulation of hospital mergers in The Netherlands. In a qualitative study design, it draws on 30 semi-structured interviews with inspectors from the Dutch Health and Youth Care Inspectorate (Inspectorate) and respondents from three hospitals that merged between 2013 and 2015. This paper draws from literature on process-based regulation to understand how regulators can monitor hospital mergers. FINDINGS: This paper finds that inspectors and hospital respondents frame the process of merging as potentially disruptive to daily care practices. While inspectors emphasise the dangers of merging, hospital respondents report how merging stimulated them to reflect on their care practices and how it afforded learning between hospitals. Although the Inspectorate considers mergers a risk to quality of care, their regulatory practices are hesitant. ORIGINALITY/VALUE: This qualitative study sheds light on how merging might affect key hospital processes and daily care practices. It offers opportunities for the regulation of hospital mergers that acknowledges rather than aims to dispel the uncertain and potentially ambiguous impact of mergers on quality and safety of care.

Broadening the scope of live-in migrant care research: How care networks shape the experience of precarious work.

Live-in migrant care work is increasing across welfare states. In the context of ageing populations and changing healthcare systems, live-in care enables ageing in place without overburdening family caregivers. However, research has shown that live-in care often puts migrant care workers and their recipients in precarious positions. While the outcome of precarious work has gained attention, it is not self-evident. Based on interviews with migrant care workers in the Netherlands, as well as formal and informal caregivers, and the staff of intermediary organisations, this study shows that besides client conditions, the interactions of actors in the care network shape the circumstances and experience of migrant live-in care work. The findings suggest that managing the care networks to which migrant care workers belong makes it possible to mitigate the associated precariousness.