Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers - a qualitative longitudinal study (original) (raw)

2018, Scandinavian journal of caring sciences

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',...

A qualitative study of integrated care from the perspectives of patients with chronic obstructive pulmonary disease and their relatives

BMC health services research, 2014

Disease management programmes have been developed for chronic obstructive pulmonary disease (COPD) to facilitate the integration of care across healthcare settings. The purpose of the present study was to examine the experiences of COPD patients and their relatives of integrated care after implementation of a COPD disease management programme. Seven focus groups and five individual interviews were held with 34 patients with severe or very severe COPD and two focus groups were held with eight of their relatives. Data were analysed using inductive content analysis. Four main categories of experiences of integrated care emerged: 1) a flexible system that provides access to appropriate healthcare and social services and furthers patient involvement; 2) the responsibility of health professionals to both take the initiative and follow up; 3) communication and providing information to patients and relatives; 4) coordination and professional cooperation. Most patients were satisfied with th...

Caregiver Experiences and Roles in Care Seeking During COPD Exacerbations: A Qualitative Study

Annals of Behavioral Medicine, 2021

Background Chronic obstructive pulmonary disease (COPD) is a progressive, debilitating illness characterized by exacerbations that require timely intervention. COPD patients often rely on informal caregivers—relatives or friends—for assistance with functioning and support. Caregivers perform roles that may be particularly important during acute exacerbations in monitoring symptoms and seeking medical intervention. However, little is known about caregivers’ roles and experiences as they support their patients during exacerbations. Purpose To explore the experiences, roles in care seeking, and needs of caregivers during COPD exacerbations. Methods Semi-structured interviews were conducted with 24 caregivers of Veterans with COPD who experienced a recent exacerbation. Interviews were recorded, transcribed, and analyzed using inductive content analysis. Results Five themes arose: (a) caregivers reported continuously monitoring changes in patients symptom severity to identify exacerbatio...

Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors

BMC family practice, 2014

Background: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD. Methods: We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach. Results: The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word ‘asthma’ was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care. Conclusions: In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit.

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