Trapped in my lungs and fighting a losing battle. A phenomenological study of patients living with chronic obstructive and pulmonary disease.

Chronic obstructive and pulmonary disease (COPD) has detrimental effects on individuals with the disease. COPD causes breathlessness, morbidity and associated psychosocial distress. This study was guided by the phenomenological question what is it like to have COPD and situated in Van Manen's phenomenology of practice. Experiential material was gathered through phenomenological interviews. Four themes emerged from the lived experiences of patients living with COPD: breath as a possibility; being vigilant; fighting a losing battle; and feeling isolated from others. For patients with COPD, breathing becomes ever-present and shifts from the invisible background of daily living to the central activity around which everyday life is organised. COPD patients always monitor their own breath and scrutinise the environment on possible dangers that can affect their breathing. Whenever moving or being involved in an activity, a part of their mind is preoccupied with the breathing. Although COPD patients realise that no amount of good behaviour will matter and that the decline of their lungs is inevitable, they make every effort to take good care of their body. They anticipate and avoid triggers of breathlessness isolating them from social interactions and activities. The appearance of the body as a source of social embarrassment also has an isolating effect. This study shows that breathlessness is a constant horizon that frames the experience of COPD patients. It is a limiting factor and determines their entire life. A more profound understanding of these experiences in healthcare professionals will contribute to person-centred care for COPD patients.

The Mindful Body: A Phenomenology of the Body With Multiple Sclerosis.

For people living with multiple sclerosis (MS), one's own body may no longer be taken for granted but may become instead an insistent presence. In this article, we describe how the body experience of people with MS can reflect an ongoing oscillation between four experiential dimensions: bodily uncertainty, having a precious body, being a different body, and the mindful body. People with MS can become engaged in a mode of permanent bodily alertness and may demonstrate adaptive responses to their ill body. In contrast to many studies on health and illness, our study shows that the presence of the body may not necessarily result in alienation or discomfort. By focusing the attention on the body, a sense of well-being can be cultivated and the negative effects of MS only temporarily dominate experience. Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance.

Feeling an outsider left in uncertainty - a phenomenological study on the experiences of older hospital patients.

This paper starts from a care ethical perspective on care and reports on a phenomenological study into older patients' experiences of hospitalisation. Although hospital care for older patients is at the centre of attention, questions what is at stake and what defines quality of care are rarely discussed with a view to the perspective of older patients themselves. The qualitative observational method of shadowing was used. Ten patients of 75 years old or older were shadowed from admission until discharge. The reflective lifeworld approach, based on phenomenological philosophy, was used to analyse the collected data. For the older patients included in the study, the essential meaning of hospitalisation can be described as feeling an outsider left in uncertainty. The word 'left' reveals how hospitalisation is experienced as a solitary struggle with various uncertainties that are related both to the hospital environment and to the patient's personal situation. The essential meaning is composed of the following three constituents: (i) staying in an inhospitable place, (ii) feeling constrained and (iii) experiencing disruption. The busy walking back and forth of care professionals and the functional character of involvement, restrain older patients from participating and make them feel abandoned. Feeling constrained reveals the feelings brought on by the ageing body which are emphasised by hospitalisation but often neglected by hospital staff. The failure of healthcare professionals to recognise and respond to who older patients are aside from their illness exacerbate the experience of disruptions. To improve care, hospital staff must be more sensitive to older patients' uncertainties. Also, hospital staff should provide older patients with understandable information and explanation which besides offering patients the possibility to feel involved, meets their need for recognition.

Patient Participation in Hospital Care: How Equal is the Voice of the Client Council?

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'.

Why frailty needs vulnerability: A care ethical perspective on hospital care for older patients.

The vulnerability of older hospital patients is increasingly understood in physical terms, often referred to as frailty. This reduces their vulnerability to the functioning body regardless of the psycho-socio-cultural context they are in, and it ignores the role of the hospital environment. This paper starts from a care ethical perspective on care and uses insights from empirical work that shows that hospitalization of older patients is characterized by experiences of uncertainty that give rise to feelings of vulnerability. This paper presents a model that clarifies how vulnerability occurs in the interplay between the embodied subject, others, daily life and the hospital, and shows its dynamic and relational nature. Our complementary perspective of vulnerability is vital for nursing practice in that it starts from the situatedness of the older patient and not only points at what is missing but also at what is of significance to the older patient. Taking into account this perspective helps improving relational care.

Participating in a world that is out of tune: shadowing an older hospital patient.

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.

Moral aspects of filial concern for a parent living with dementia: Social imaginaries in contemporary narratives.

Many adults face the difficulties of a parent living with dementia. Although not always caregiving for a parent living with dementia, they care about and are concerned for the vulnerability of their parent. This concern is invaluable but often an experience with a far-reaching impact. Qualitative research on filial concerns and experiences of caregiving has resulted in a vast body of knowledge about the experience of family carers. Far less research, however, has examined the moral concern of children. The aim of this study is to gain insight into the normative aspects of their concern. An international collection of 24 books written by adult children about their involvement with an ageing parent was analysed using the Dialogical Narrative Analysis method. Our study shows that the stories deal with children's moral questions about independence, identity, and suffering. These questions can be related to social imaginaries of individualism and progress. The two social imaginaries may have both positive and negative impacts on children's ability to cope with their concern for a parent living with dementia. The moral questions that arise from children's concern seem to originate from both the appeal of the vulnerable parent and from the social imaginaries. These moral sources may compete, resulting in moral friction. Children with a parent living with dementia deliberate upon the personal and societal held beliefs and need moral space to embody their concern.

Giving voice to vulnerable people: the value of shadowing for phenomenological healthcare research.

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.

Normative tensions in filial caring for a mother with dementia: A narrative perspective.

This article aims to gain insight in the normative struggles of adult children caring for their ageing mother living with dementia. Two Dutch autobiographical books written by siblings recording their own caregiving experience were analysed using a narrative design. Children appear to understand their normative concerns through six fields of tension. Our analysis shows that filial caregivers describe two distinct approaches to deal with these normative tensions. One approach aims to preserve the child's pre-existing personal beliefs and values, but also causes the child to demonstrate rigid and uncompromising behaviour at odds with the needs of their parent. The other approach is more reflective and flexible, prioritizing the needs of the vulnerable person over previously held values, providing an opportunity for better care. We conclude that caregiving children have to find their way between being faithful to their principles and showing moral flexibility.

Fear, fight, familiarize: the experiences of people living with relapsing-remitting multiple sclerosis and taking oral medication.

Purpose: In addition to becoming familiar with the life changing event of having a chronic illness and exploring its meaning in daily life, people with relapsing-remitting Multiple Sclerosis (RRMS) are faced with important decisions about immunomodulating treatment. Biomedical research on the use of Disease Modifying Therapies (DMTs) mostly focuses on adherence, conceptualized and understood as a behavioral act leading to a desired outcome. Less attention has been paid to the meaning for a person with RRMS of starting and continuing the use of DMTs. Studies on the experiences of people with RRMS taking orally administered DMTs are lacking. The aim of this phenomenological study was to examine the experiences of people with RRMS taking oral medication. Methods: The study was guided by Interpretative Phenomenological Analysis (IPA) and Phenomenology of Practice. 25 persons with RRMS participated in in-depth interviews. Results: In general, participants of this study find themselves in alternating phases that vary by degree of experienced unfamiliarity or familiarity with concern to one's illness, one's changing body, and one's new life. The meaning of taking medication is closely related to these phases. Conclusions: Adherence serves a purpose in the lifeworlds of participants. Medication is the embodiment of this purpose. The pill has inherent meaning.