Hanneke Van Der Meide

The influence of spatial aspects on patients’ well-being has been described as crucial for more humanizing care. The notion of lived space is usually introduced in this context. In Europe, over the last decade, a lifeworld awareness has increasingly been applied to healthcare. Care given from a lifeworld perspective could provide important ideas and values that are central to the humanization of healthcare practice. This lifeworld perspective is grounded in phenomenological philosophy, which will briefly be described in this chapter, followed by an examination of how lived space is understood and illustrated by examples from empirical research. From a care ethical perspective, however, a broader notion of space is needed that better reflects the practice of care. The lifeworld approach remains focused on care as too narrow an interaction between two people, the patient and the healthcare professional. Therefore, a three-dimensional perspective of space will be explored, as described by philosopher and sociologist Henri Lefebvre. His view allows a shift in focus from the experiencing subject to social practice and changes the object of analysis when studying the humanization of care. This perspective offers a lens to reflect upon and enhance care practices. Also, studying the dynamic interplay between these dimensions may enable a better understanding of spatial vulnerability as it emerges in care practices.

Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields

Hospitalization significantly impacts the lives of older people, both physically and psychosocially. There is lack of observation studies that may provide an embodied understanding of older patients’ experiences in its context. The aim of this single case study was to reach a deeper understanding of one older patient’s lived experiences of hospitalization. The study followed a phenomenological embodied enquiry design and the qualitative observation method of shadowing was used. In April 2011, one older patient was shadowed for 7 days, 5–7 h per day. To facilitate understanding in the reader the experiences are first presented in a story and subsequently analyzed by means of the lifeworld framework. The findings show that hospitalization is experienced as ambiguous safety, disconnected time, the feeling of being partially involved, and the struggle to re-attune to the body.

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’