The good care relationship in long term care: Attending to ethical tensions and burdens

Abstract

In supported living services for people with intellectual disability, serious mental illness or older persons, values such as self-directedness, independence, personal recovery, and community participation have become prominent. This thesis analyses practicing such values as complex. Complexity arises from values being in tension, or clients experiencing them as a burden. Attending to these normative complexities is important for improving quality of care. This thesis provides both the insights necessary to recognize and reflect on these normative complexities as well as the means to improve quality of care taking these normative complexities into account. The thesis is indebted and contributes to debates in care ethics, Science and Technology Studies (STS), valuation studies, medical anthropology and -sociology. The overall research goal of the thesis is twofold. First, to develop a better understanding of the complexity of practicing values such as self-directedness, independence, personal recovery and community participation in supported independent living. For this purpose, the book relies on three case studies. Two case studies were conducted at a community care organization: in a combined group and ambulant care setting for people with intellectual disabilities and a combined group and ambulant care setting for people with serious mental illness. The third case study was conducted at an organization providing nursing home care and home care services. This case study focused on one homecare team. The cases were explored using ethnographic methods such as participant observation, shadowing, interviews, photovoice and focus groups. To include the experiences of people for whom these methods were not accessible we asked experts-by-experience to reflect on experiences they witnessed as peer support workers in supported living. The second goal of this research was to develop a method to support clients, professionals, and family members to voice their experiences with care; reflect and deliberate on normative tensions and co-design practices that better attend to these tensions. Through a participatory research project, various stakeholders were involved in adjusting the Experience-Based Co-Design method to fit this purpose. These stakeholders include researchers, clients, professionals, family members, managers of the involved organizations for supported independent living; Zorgbelang Inclusief and theatre company Babel Rotterdam. The result of this participatory process is the ‘Ask Us!’ method for participatory quality improvement (or in Dutch: ‘Als je het ons vraagt’, see: https://www.eur.nl/eshpm/onderzoek/als-je-het-ons-vraagt). Chapter 1 introduces the policy trends in long term care and the values underlying the care relationship implicit in these trends. The chapter highlights how these values can be in tension and how ways of enacting these values can pose burdens on clients. Moreover, I show how these tensions are silenced in policies forming the background to professional practice, such as quality frameworks and competency profiles. In this chapter I introduce and integrate the theoretical notions that allow me to focus on the relationality of care while attending to its value complexities within the broader organizational and national context. The chapter continues with a critical review of current practices and methods for improving quality of care and argues why a novel method is needed. The chapter ends with the research questions and the research methods central in this book. Chapter 2 introduces ethical tensions between values in long term care for people diagnosed with serious mental illness. Based on a thematic synthesis of qualitative studies, the chapter shows how values such as self-determination and independence can be in conflict. For instance, when clients do not want to move from a group home to an ambulant care setting. Moreover, the chapter shows how clients, family members and professionals can prioritize different values. Family members for example might perceive a household as neglected, whereas professionals see their non-interference as a form of fostering self-determination of clients. Chapter 3 further elaborates on the value complexity of the care relationship by introducing the theoretical notions ‘multiple ontology’ and ‘tinkering’ (as developed by Mol, Moser & Pols). Through the empirical cases of supported independent living for people with an intellectual disability or serious mental illness, this chapter shows how value tensions need to be handled in a collective of clients, professionals, and family members. To capture these practices of good care, the chapter develops the theoretical notion of collective tinkering. Collective tinkering entails attentively experimenting with care practices in which different goods are assembled in collectives of people and things. From this notion it follows that quality improvement requires to move beyond reflection amongst professionals to include deliberation between clients, professionals and family members and co-design of practices in which different values are assembled. Chapter 4 focusses on the experiences of clients with care aimed at promoting self-determination, independence, personal recovery and community participation. The chapter shows how clients can experience negative consequences from the way such values are practiced by professionals or inscribed in organizational structures. For example, the personal care plan, in which clients formulate their goals for care, is an organizational structure aimed at promoting the value of self-determination. However, in practice this structure can paradoxically limit self-determination, for instance when the goals are translated into tasks professionals need to tick off each shift. The theoretical notion: ‘burden of support’ is developed in this chapter to capture the negative consequences experienced by clients. Burden of support forms a counternarrative aimed at empowering service users and their advocates to voice such negative consequences. This way services are supported to improve the quality of care. Chapter 5 elaborates on a case study in homecare services for older persons. It introduces insights from valuation studies to show how professionals’ understanding of good care is shaped by the organizational and national context. Within this context, professionals differ in the way they understand and practice good care, leading to ethical tensions within the team. The chapter further shows how institutionalized values push other ways of providing good care to the background. This chapter develops the theoretical notion of ‘invisible worth’ to capture these values. For improving quality of care, it is important that such invisible worths are attended to. Chapter 6 elaborates on the development of the quality improvement method ‘Ask Us!’. This method is an adjustment of the Experience Based Co-design method and aims at improving quality of care while attending to value complexities. The method is designed to enable professionals, clients, and family members to reflect on their own experiences with ethical tensions, burdens of support and invisible worth’s; to identify areas for improvement and deliberate their different perspectives on these. These deliberations are supported by filmed theatrical monologues, which are translations of the ethnographic work of the three case studies. These films were developed in collaboration with an inclusive theatre company: Theater Babel Rotterdam. The method ‘Ask Us!’ furthermore includes a process of co-design to improve care practices. This way the method provides a structure for collective tinkering in organizations in supported independent living. Chapter 7 ties together the insights from the different chapters. First, the chapter provides an overview of the type of ethical tensions in the care relationship that emerge with a focus on values such as self-determination, independence, and community participation. Second, I go into the consequences of when this normative complexity is not sufficiently attended to. This includes the burdens of support and experiences of poor quality of care. For good care it is important that clients, professionals, and informal carers tinker collectively. Within collective tinkering it is important to also attend to the values that contribute to good care but are often rendered invisible. The chapter continues to discuss how the method developed as part of this research: ‘Ask us!’ supports good care. The chapter ends with methodological reflections and implications for policy and practice. Methodological reflections include the involvement of experts-by-experience as co-ethnographers to include a wider variety of experiences and to overcome the limitations of interviews, focus groups or participant observation. Other methodological reflections include how critical client involvement through the development of counternarratives requires to move beyond the rhetoric of equal client participation in research, as developing counternarratives requires significant efforts of the researcher. Lastly, the use of translations as part of the development of the filmed monologues is reflected upon. For policy and practice the book highlights the importance of reflection, deliberation and co-design of normative complexities in healthcare and the way the ‘Ask Us!’ method can contribute to this