Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies

Holmen, Heidi; Larsen, Marie Hamilton; Sallinen, Merja; Thoresen, Lisbeth; Ahlsen, Birgitte; Andersen, Marit Helen; Borge, Christine Råheim; Eik, Hedda; Wahl, Astrid Klopstad; Mengshoel, Anne Marit

doi:10.1186/s12913-019-4826-2

Cited by 16 publications

(24 citation statements)

References 39 publications

(107 reference statements)

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“…This suggestion is supported by an official policy statement by the American Thoracic Society and the European Respiratory Society [ 19 ]. The responsibility of supporting and increasing the competence of healthcare professionals lies partly on the healthcare professionals themselves, but particularly with the management in health organisations and educational institutions [ 18 , 20 ].…”

Section: Discussionmentioning

confidence: 99%

Groping around in the dark for adequate COPD management: a qualitative study on experiences in long-term care

Lundell

Pesola

Nyberg

et al. 2020

BMC Health Serv Res

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Background Chronic obstructive pulmonary disease (COPD) is one of the most common and deadliest chronic diseases worldwide. Since COPD is a chronic and progressive disease, treatment is necessary throughout life. For people with COPD who cannot live independently, long-term care facilities are often required. However, knowledge is very limited about aspects of importance for effective COPD management in these settings in accordance with current treatment guidelines. The aim of this study was to explore aspects of importance in long-term care facilities for providing interventions according to treatment guidelines for people with COPD, from the perspective of healthcare professionals, in an effort to prove novel knowledge that could be used to facilitate implementation of treatment guidelines in these settings. Methods A qualitative study was performed in northern Sweden. In Sweden, municipalities are responsible for providing long-term care. Interviews with 36 healthcare professionals (nurses, physiotherapists, occupational therapists and dieticians) in municipal healthcare were conducted and analysed using qualitative content analysis with triangulation by the authors. Results The overarching theme that emerged from the analysis was Groping around in the dark for adequate COPD management. This represents healthcare professionals’ experiences of working with a complex diagnosis somewhat overlooked in the municipal healthcare, an underdog in the healthcare system. The groping around in the dark theme further represents the healthcare professionals’ lack of COPD-related competence, lack of interprofessional collaboration, and insufficient communication with the county council. The fragile group of people with COPD and their relatives were considered in need of support adapted to their context, but routines and resources for COPD management were limited. This lack of routines and resources also resulted in professionals being pragmatic and adopting short-term solutions without focusing on specific needs related to the diagnosis. Conclusions The COPD management in long-term care settings showed several insufficiencies, indicating a large gap between clinical practice and treatment guidelines for COPD. It is crucial to improve COPD management in long-term care settings. Consequently, several actions are needed, such as increasing professional competence, establishing new routines, acknowledging and making COPD a higher priority, as well as adapting treatment guidelines to the context.

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Section: Discussionmentioning

confidence: 99%

Groping around in the dark for adequate COPD management: a qualitative study on experiences in long-term care

Lundell

Pesola

Nyberg

et al. 2020

BMC Health Serv Res

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“…In addition, conflicts can arise if the perceptions of those affected and healthcare professionals diverge and patients or their relatives do not behave as expected by the healthcare professionals. 58 The experience of being reduced to the illness could be prevented in the context of the healthcare system by focusing on the patient and his/her interests rather than the disease. The exchange with other affected patients and family members could provide further assistance, especially in dealing with feelings of helplessness, being at the mercy of the illness and reduced to it.…”

Section: Discussionmentioning

confidence: 99%

“…Trustful collaborations between patients, families and healthcare professionals are essential for high-quality care, especially in the context of long-lasting chronic conditions. 58 , 59 A better understanding of the shifting character of HCP and the associated problems can help healthcare professionals to establish a trustful relationship and provide sustainable support. In addition to trustful and permanent support, specific assistance in the respective phases is very important.…”

Section: Discussionmentioning

confidence: 99%

Lived Experience of Hereditary Chronic Pancreatitis – A Qualitative Interview Study

et al. 2021

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Objectives Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions. Methods Semi-structured qualitative interviews were conducted with hereditary chronic pancreatitis patients and their relatives. Data were analysed using qualitative content analysis. The concepts of ‘biographical contingency,’ ‘biographical disruption’ and the ‘shifting perspectives model’ served as theoretical frameworks. Results A total of 24 participants (17 patients, 7 relatives) were interviewed individually. Four main themes were identified: (1) The unpredictable clinical course of hereditary chronic pancreatitis; (2) hereditary chronic pancreatitis as a devastating experience; (3) hereditary chronic pancreatitis as part of a normal life; and (4) being reduced to hereditary chronic pancreatitis. Discussion The ‘shifting perspectives model’ of chronic illness covers the four dimensions adequately and can serve as a theoretical model to explain hereditary chronic pancreatitis patients’ experience. A better understanding of the patients and their families’ experience and the shifting character of hereditary chronic pancreatitis can help healthcare professionals to tailor the care to meet the needs of those affected.

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“…In this way, HPs consider patients not as victims of incurable illness, but as social beings with resources to recover, and this may bring a more positive attitude to the group and awaken hope that persists over time, as expressed by those interviewed. In turn, this may protect HPs against pessimism and burnout [ 64 ].…”

Section: Discussionmentioning

confidence: 99%

Enabling personal recovery from fibromyalgia – theoretical rationale, content and meaning of a person-centred, recovery-oriented programme

Mengshoel

Skarbø²,

Hasselknippe³

et al. 2021

BMC Health Serv Res

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Background Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients. Methods A multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients’ illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1–1.5 years. Results The biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency. Conclusion To our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.

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Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies

Cited by 16 publications

References 39 publications

Groping around in the dark for adequate COPD management: a qualitative study on experiences in long-term care

Groping around in the dark for adequate COPD management: a qualitative study on experiences in long-term care

Lived Experience of Hereditary Chronic Pancreatitis – A Qualitative Interview Study

Enabling personal recovery from fibromyalgia – theoretical rationale, content and meaning of a person-centred, recovery-oriented programme

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