Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study (original) (raw)
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Chronic Respiratory Disease, 2007
There is limited published research into what really matters to people living with chronic obstructive pulmonary disease (COPD). Most previous research in this area focuses on the impact of the symptoms of COPD, rather than on the issues defined as important by patients themselves. This paper describes an exploratory study investigating what is most important to people living with COPD. A qualitative approach employing in-depth interviews with COPD patients was chosen. Thematic analysis was used to code and categorize data. Six patients with 'moderate' to 'very severe' COPD were recruited. They considered engagement in specific activities to be very important (walking, household maintenance and driving), even though these activities were mainly centred around the home environment, or within confined spaces, due to their physical limitations. This restriction led to feelings of social isolation that these patients tried to overcome through social participation (holidays, social interaction). People with COPD often experience physical restrictions, which can lead to reduced community mobility and social isolation. In this study, despite their physical limitations, these patients had a strong desire to participate and be engaged in various activities. The importance of enabling patients to 'participate' rather than just 'do' should be considered when planning and delivering patient-centred interventions across the whole spectrum of severity of COPD.
The experiences of patients and carers in the daily management of care at the end of life
International Journal of Palliative Nursing, 2014
Background Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. Aim To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. Method Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. Findings Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patient...
Scandinavian journal of caring sciences, 2018
Patient-family-healthcare provider interaction seems important for patients with chronic obstructive pulmonary disease (COPD) and their family members' self-management practices. Because the need for support might be enhanced after a hospitalisation, it might be beneficial to explore this interaction further in follow-up health care. To explore the meaning of patients' and their family members' experiences of interacting with healthcare providers to their daily self-management over time. Participant observations and in-depth interviews were conducted repeatedly with 10 patients and seven family members during follow-up visits at hospital and at the participants' homes between 2014 and 2016. A phenomenological-hermeneutical approach was used to interpret the data. 'Between hope and hopelessness' involved frustrations, concerns and doubts, all of which could relate to the interaction with healthcare providers. 'Seeking support from healthcare services',...