A qualitative assessment of COPD patients' experiences of pulmonary rehabilitation and guidance by healthcare professionals

Meis, Jessie J.M.; Bosma, Claudia B.; Spruit, Martijn A.; Franssen, Frits M.E.; Janssen, Daisy J.A.; Teixeira, Pedro J.; Augustin, Ingrid; Wouters, Emiel F.M.; Vries, Nanne K. de; Schols, A.M.W.J.; Kremers, Stef

doi:10.1016/j.rmed.2013.11.001

Cited by 48 publications

(58 citation statements)

References 33 publications

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“…In a study of Swedish healthcare [45], the concept of health promotion was perceived as diffuse and hard to understand. At the same time Meis, et al [46] pointed out the important role the professionals have when guiding the patients through lifestyle changes. In a study of implementation of multimodal pain rehabilitation – another low-status area in primary care in Sweden – it was pointed out that the management must take the responsibility to provide support and time for rehabilitation [47].…”

Section: Discussionmentioning

confidence: 99%

Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective

Lundell

Tistad

Rehn

et al. 2017

BMC Health Serv Res

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BackgroundChronic obstructive pulmonary disease (COPD) is a public health problem. Interprofessional collaboration and health promotion interventions such as exercise training, education, and behaviour change are cost effective, have a good effect on health status, and are recommended in COPD treatment guidelines. There is a gap between the guidelines and the healthcare available to people with COPD.The aim of this study was to increase the understanding of what shapes the provision of primary care services to people with COPD and what healthcare is offered to them from the perspective of healthcare professionals and managers.MethodsThe study was conducted in primary care in a Swedish county council during January to June 2015. A qualitatively driven mixed methods design was applied. Qualitative and quantitative findings were merged into a joint analysis. Interviews for the qualitative component were performed with healthcare professionals (n = 14) from two primary care centres and analysed with qualitative content analysis. Two questionnaires were used for the quantitative component; one was answered by senior managers or COPD nurses at primary care centres (n = 26) in the county council and the other was answered by healthcare professionals (n = 18) at two primary care centres. The questionnaire data were analysed with descriptive statistics.ResultsThe analysis gave rise to the overarching theme building COPD care on shaky ground. This represents professionals driven to build a supportive COPD care on ‘shaky’ organisational ground in a fragmented and non-compliant healthcare organisation. The shaky ground is further represented by uninformed patients with a complex disease, which is surrounded with shame. The professionals are autonomous and pragmatic, used to taking responsibility for their work, and with limited involvement of the management. They wish to provide high quality COPD care with interprofessional collaboration, but they lack competence and are hindered by inadequate routines and lack of resources.ConclusionsThere is a gap between COPD treatment guidelines and the healthcare that is provided in primary care. To facilitate implementation of the guidelines several actions are needed, such as further training for professionals, additional resources, and improved organisational structure for interprofessional collaboration and patient education.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2393-y) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective

Lundell

Tistad

Rehn

et al. 2017

BMC Health Serv Res

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“…For pulmonary rehabilitation classes, this might be achieved by overcoming the transport and mobility problems that prevent access, normalizing the differences between patient performance when starting rehab or due to different stages of COPD and providing psychological support to patients who fear breathlessness. It may be helpful for physiotherapists to assist the patient to set achievable, personal goals for rehab to enhance feelings of progress and achievement,27,28 and the enthusiasm communicated by the referring provider about expectations of enjoyment and increased confidence (as well as physical benefits of pulmonary rehabilitation) may be important for encouraging adherence 29…”

Section: Discussionmentioning

confidence: 99%

Patient-perceived treatment burden of chronic obstructive pulmonary disease

Harb

Foster

Dobler

2017

COPD

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BackgroundWhile chronic morbidity and mortality from COPD is well documented, little is known about the treatment burden faced by patients with COPD.Subjects and methodsPatients with severe airflow obstruction (forced expiratory volume in 1 second [FEV1] <50% predicted) representing different age-groups, sex, and number of comorbidities participated in a semistructured interview. Interviews were conducted until thematic saturation was reached. Interviews were recorded, transcribed, and analyzed thematically using an established treatment-burden framework.ResultsA total of 26 patients (42% male, mean age 66.7±9.8 years) with severe (n=15) or very severe (n=11) airflow limitation (mean FEV1 32.1%±9.65% predicted) were interviewed. Participants struggled with various treatment-burden domains, predominantly with changing health behaviors, such as smoking cessation and exercise. Interviewees often only ceased smoking after a major health event, despite being advised to do so earlier by a doctor. Recommended exercise regimens, such as pulmonary rehabilitation classes, were curtailed, although some patients replaced them with light home-based exercise. Interviewees had difficulty attending medical appointments, often relying on others to transport them. Overall, COPD patients indicated they were not willing to accept the burden of treatments where they perceived minimal benefit.ConclusionThis study describes the substantial treatment burden experienced by patients with COPD. Medical advice may be rejected by patients if the benefit of following the advice is perceived as insufficient. Health professionals need to recognize treatment burden as a source of nonadherence, and should tailor treatment discussions to fit patients’ values and capacity to achieve optimal patient outcomes.

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“…Lewis et al [54, p0.176] refer to the process of embodying medical information and the expression of it through a mix of lay and medical terminology as "pathophysiological perceptions." Medical information is considered key to addressing patients' insufficient knowledge and education about their condition [54,56,57]. Rehabilitation programs perform a key role in education around the disease and patients appreciate receiving additional knowledge about the disease and how it is treated [58].…”

Section: Drawing: a Tool For Rehabilitationmentioning

confidence: 99%

Imaging and imagining chronic obstructive pulmonary disease (COPD): Uruguayans draw their lungs

Wainwright

2017

Disability and Rehabilitation

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Purpose: This anthropological study investigated what people imagined chronic obstructive pulmonary disease to look like in their lungs, what may be influencing these images and how this imagery shapes embodiment. Method: Employing graphic elicitation, in one of multiple ethnographic interviews, participants were asked to draw their lungs: "If we could look inside your chest now, what would we see?" Lung drawings and accompanying narratives and fieldnotes from 14 participants were analyzed for themes and patterns. Results: The theme of "imaging/imagining" emerged and three distinct patterns within this theme were identified: the microscope perspective, the X-ray perspective and the reduced pulmonary capacity perspective. These patterns demonstrate how embodiment can be shaped by an integration and reinterpretation of the medical images that form part of everyday clinic visits and pulmonary rehabilitation. Conclusions: Medical technology and images impact patients' embodiment. Understanding this is important for rehabilitation practitioners who work in a challenging space created by potentially conflicting medical narratives: on the one hand, chronic obstructive pulmonary disease is incurable permanent damage, and on the other, improvement is possible through rehabilitation. Drawing could be integrated into pulmonary rehabilitation and may help identify perceptions of the body that could hinder the rehabilitation process. ä IMPLICATIONS FOR REHABILITATIONDrawings, when combined with interviews, can lead to a deeper and more complex understanding of patients' perspectives and embodiment. Rehabilitation practitioners should be concerned with how patients embody the medical technology and imagery they are exposed to as part of the educational component of pulmonary rehabilitation and healthcare generally. Asking patients to visualize their illness through drawing may help pulmonary rehabilitation practitioners identify perceptions of the body which could hinder the patient's ability to reap the full benefit of their treatment. ARTICLE HISTORY

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A qualitative assessment of COPD patients' experiences of pulmonary rehabilitation and guidance by healthcare professionals

Cited by 48 publications

References 33 publications

Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective

Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective

Patient-perceived treatment burden of chronic obstructive pulmonary disease

Imaging and imagining chronic obstructive pulmonary disease (COPD): Uruguayans draw their lungs

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