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Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute–community interface, social care, nursing preparedness for practice and the experiences of the child and family in all Models of Child Health Appraised countries. We investigated data integration and the presence of validated standards of care, including governance and co-creation of care. A separate enquiry was conducted into how care is accessed for children with enduring mental health disorders. This included the level of parental involvement and the presence of multidisciplinary teams in their care. For all children with CCNs, we found wide variation in access to, and governance of, care. Effective communication between the child, family and health services remains challenging, often with fragmentation of care delivery across the health and social care sector and limited service availability.

The reasons for and experiences during migration, as well as additional stressors in the new host country, may give rise to mental health problems and additional need for public services. The purpose of the study was to investigate factors related to service utilization among newly arrived refugee youth.

Cross-sectional data were gathered in Sweden where 37 youth aged between 19 and 23 reported on factors related to service utilization, encompassing health-care and support services in school. These factors included predisposition (demographic), need (migration status and mental wellbeing) and enablement (living situation). Service utilization was estimated using multiple logistic regression analysis.

About a fourth of the sample used psychosocial services. Use of general support was more common. Neither predisposing, need nor enabling factors were associated with the use of psychosocial or general health-related services.

Self-reported factors related to use of health-related services have previously not been investigated for refugee youth, which is important in assuring access to appropriate services for this exposed youth population.

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.

As populations are ageing and the global average life expectancy is rising, the provision of care for older people is an increasingly salient issue. This paper aims to focus on family-provided care for older immigrants, examining how older immigrants and care providers experience and construct family caregiving.

Based on interviews with care recipients, family care providers, municipal staff and representatives for migrant organisations in Sweden, this study presents a typology of family caregiving for older immigrants.

The authors found three caregiving types, namely, solely family-provided care and a combination of family care and public care (predominantly one or the other). The decision to select family-provided or publicly-funded care depends on personal and institutional factors.

The paper makes three empirical contributions to the literature on care provision for older immigrants. Firstly, this study provides insights into the structural and personal factors that shape care-giving arrangements for older immigrants. Secondly, this study examines the perspectives of care recipients and care providers on family-provided care. Care expectations differ between both groups and sometimes result in intergenerational disagreement. Thirdly, in terms of institutional support, this study finds that the Swedish state’s notion of individual needs does not match the needs of immigrant elderly and their caregivers. The paper places the care types in a broader discussion about eldercare provision in the Swedish welfare state, which has experienced a decline in publicly funded care services and an increase in family caregiving in the past 30 years. In addition, it addresses questions of dignified ageing from a minority perspective.

In the face of diverse national and international threats, the purpose of this paper is to explore the transformational leadership challenges in emergency services systems in Canada. These adaptive complex systems respond to critical mass emergencies, disasters and catastrophes.

This qualitative research study uses grounded theory to examine the phenomenology of emergency services leadership from systems perspective. Using the theoretical Wu-Shi-Ren (WSR)-Li systems paradigm, this key informant study of 103 emergency leaders from 81 organizations focusses on the systemic challenges that transformational leaders face in emergency services systems. The response rate was 83.5 percent using a semi-structured and open-ended questionnaire.

This key informant study underscores the competencies for transformational leadership and identifies 12 key leadership challenges in the context of the future evolution of emergency services systems. From the use of a grounded theory methodology, the new theory of transcendental transformational emergency leadership is posited.

Qualitative studies such as this key informant study underscores the relevance of the WSR-Li systems paradigm and grounded theory approach in discerning leadership challenges that are specific if not unique to emergency services systems.

This study underscores the theoretical and pragmatic implications of the transformational leadership challenges for leadership paradigms, innovation and inter-sectorial collaborative networks and possible future emergency services research.

This study stresses the importance of addressing leadership challenges of emergency services systems as instrumental in ultimately saving lives, minimizing injuries and assuring complete health and social recovery from the scourges of emergency events nationally and internationally.

Qualitative studies of the perspectives of strategic emergency leadership of systemic emergency services systems has not hitherto been done in Canada nor internationally. This key informant study underscores the relevance of the WSR-Li systems paradigm and grounded theory approach in discerning transformational leadership challenges that are specific if not unique to emergency services systems. Moreover, from the use of a grounded theory approach, a new theory of transcendental transformational emergency leadership emerged.

The aim of this paper is to argue for the values of familial caring and relationships in addition to the provision of social media technology during the COVID-19 pandemic in Hong Kong.

The discussion of this paper has adopted an inter-disciplinary approach by integrating health care system and psychological analysis, based on cultural philosophical argument through the hermeneutic approach of classical texts and critical analysis.

The COVID-19 pandemic has exposed the dilemma between the public health measures for COVID-19 and sustaining elderly social psychological health through familial connection. From a Confucian perspective, the practice of filial piety (xiao, 孝), which demands taking care of parents, is essential for one’s moral formation, and for one’s becoming a virtuous (ren, 仁) person. The necessity of taking care of elderly parents by adult children is not something that can be explained in terms of consequentialism. Indeed, the rising trend of instrumental rationality seems to weaken rather than strengthen the sense of filial obligation. In the face of the COVID-19 pandemic which tends to separate connections between family members, the author argues that we should emphasize the values of familial caring and relationship because it enhances the elderly’s characteristic of resilience.

This paper shows that while social media technology has mitigated the negative effect of social distancing, such online relationships should never replace the bodily connections between the elderly and their family members from a Confucian perspective.

Providing high-quality and cost-efficient care of older people is an important development priority for many health and social care systems in the world. This paper suggests a shift from acute, episodic and reactive hospital-centered care toward longitudinal, person-centered and proactive home-centered care. The purpose of this paper is to contribute to the knowledge of a comprehensive development strategy for designing and providing home-centered care of older people.

The study design is based on qualitative research with an inductive approach. The authors study development initiatives at the national, regional and local levels of the Swedish health and social care system. The data collection methods included interviews (n = 54), meeting observations (n = 25) and document studies (n = 59).

The authors describe findings related to policy actions and system changes, attempts to achieve collaboration, integration and coordination, new forms of care offerings, characteristics of work settings at home and differences in patients' roles and participation at home and in the hospital.

The authors suggest home-centered care as a solution for providing person-centered and integrated care of older people and give examples of how this can be achieved.

The authors outline five propositions for research and development related to national policies, service modularity as a solution for customized and coordinated care, developing human resources and infrastructure for home settings, expanding services that enable older people living at home and patient co-creation.

This study aims to analyze the well-being experience of home care workers regardless of the service management model. It also aims to analyze their emotional experiences of their activity and working conditions.

This study, using a mixed qualitative and quantitative analysis, allows a combined analysis for a better understanding of the well-being experience of home care workers.

Home care workers experience intrinsic job satisfaction and demonstrate this with positive emotions regardless of their work situation.

Caring for the carer should be a business value. Measures oriented toward workers’ comfort generate greater happiness and commitment, which is automatically transferred to the quality of the care provided and reduces the psychosocial risks of their professional activity.

Visualizing the social reality of an essential profession through research generates verifiable evidence that will help to improve the working conditions of home care workers in Spain.

To the best of the authors’ knowledge, this pioneering study in Spain introduces a greater understanding of how home care workers in Spain experience their work reality.

Given that the workforce constitutes a principal resource of primary care, appraisal of models of care requires thorough investigation of the health workforce in all Models of Child Health Appraised (MOCHA) countries. This chapter explores this in terms of workforce composition, remuneration, qualifications and training in relation to the needs of children and young people. We have focused on two principal disciplines of primary care; medicine and nursing, with a specific focus on training and skills to care for children in primary care, particularly those with complex care needs, adolescents and vulnerable groups. We found significant disparities in workforce provision and remuneration, in training curricula and in resultant skills of physicians and nurses in European Union and European Economic Area Countries. A lack of overarching standards and recognition of some of the specific needs of children reflected in training of physicians and nurses may lead to suboptimal care for children. There are, of course, many other professions that also contribute to primary care services for children, some of which are discussed in Chapter 15, but we have not had resources to study these to the same detail.