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At the outbreak of the COVID-19 pandemic, health care was at the centre of the crisis. New demands made existing organizational practices and services obsolete. Primary health care had a great deal of responsibility for COVID-19-related care. The pandemic demanded effective leadership to manage the new difficulties. This paper aims to explore experiences and perceptions of managers in primary health care in relation to their efforts to manage the COVID-19 crisis in their everyday work.

The authors used a qualitative approach based on 14 semi-structured interviews with managers in primary health care from four regions in Sweden. The interviews were conducted during September to December 2020. Data were analysed using conventional qualitative content analysis.

Data analysis yielded three categories: lonely in decision-making; stretched to the limit; and proud to have coped. The participants felt lonely in their decision-making, and they were stretched to the limit of their own and the organization’s capacity. The psychosocial working conditions in primary care worsened considerably during the pandemic because demands on leaders increased while their ability to control the work situation decreased. However, they also expressed pride that they and their employees had managed the situation by being flexible and having a common focus.

Looking ahead and using lessons learnt, and apart from making wise decisions under pressure, an important implication for primary health-care leaders is to not underestimate the power of acknowledging the virtues of humanity and justice during a crisis. Continuing professional education for leaders focusing on crisis leadership could help prepare leaders for future crises.

People with complex health conditions must often navigate landscapes of uncoordinated public, private and voluntary health-care providers to obtain the care they need. Complex health conditions frequently transcend the scope of typical health-care service systems. The purpose of this paper is to explore and characterize such unique assemblages of actors and services as “user-defined ecosystems”.

Building on literature on customer ecosystems, this paper introduces the concept of the user-defined ecosystem (UDE). Using an abductive approach, the authors apply the concept in an interpretive, qualitative study of ten families with special needs children.

This study uncovers complex UDEs, where families actively combine a broad range of services. These ecosystems are unique for each family and extend beyond the scope of designed service ecosystems. Thus, the families are forced to assume an active, coordinating role.

This paper shows how to identify ecosystems from the user’s point of view, based on the selected user unit (such as a family) and the focal value-creating function of the ecosystem for the user.

This paper highlights how service providers can support and adapt to UDEs and, thus, contribute to user value and well-being. This can be used to understand users’ perspectives on service and systems in health and social care.

This study develops the concept of the UDE, which represents a customer-focused perspective on actor ecosystems and contrasts it with a provider-focused and a distributed perspective on ecosystems. This study demonstrates the practical usefulness of the conceptualization and provides a foundation for further research on the user’s perspective on ecosystems.