Knowledge among patients with heart failure: A narrative synthesis of qualitative research

Daley, Carly; Al‐Abdulmunem, Monirah; Holden, Richard J.

doi:10.1016/j.hrtlng.2019.05.012

Cited by 8 publications

(16 citation statements)

References 143 publications

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“…In this subpopulation, having patience predicted more self-care behaviours [ 111 ]. In COPD, and HF, previous experiences also helped patients gain expertise in their body responses, allowing them to adopt a regulatory role and adjust their lifestyle [ 41 , 73 , 92 , 112 ]. These changes were sometimes driven by their motivation to prevent a COPD exacerbation [ 45 , 73 , 74 ].…”

Section: Resultsmentioning

confidence: 99%

“…In COPD, others stated that they preferred to wait for patients to ask questions [ 108 ]. In HF, for some healthcare professionals, contemplating questions was challenging because they felt patients were distracted and unable to pay attention [ 112 ]. This theme included two subthemes: perceived quality of care and visits or contacts with healthcare professionals.…”

Section: Resultsmentioning

confidence: 99%

“…In T2DM [ 54 , 57 , 78 , 82 ], HF [ 53 ], and obesity [ 88 ], some patients, despite having adequate knowledge or information, reported that it was difficult to apply in practice or to reconcile with other advice. Knowledge gaps should ideally be addressed at each patient’s pace; for example, some patients reported conflict between wanting information and fear of diminishing hope in COPD [ 42 , 98 , 150 ] and HF [ 112 ].…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Guzmán

García

Orrego

et al. 2021

Patient

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Background Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients' and caregivers' preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention's usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decisionmaking processes, including the formulation of recommendations, and the design and implementation of SM interventions.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Guzmán

García

Orrego

et al. 2021

Patient

View full text Add to dashboard Cite

show abstract

“…They considered the course of the disease and its decompensations would not be modified by lifestyle changes, for instance, a hyposodic diet. Apart from a study in HF patients which reported that patients felt able to influence the course of the disease [36], there is no further information about the locus of control in advanced HF patients.…”

Section: Discussion Of the Main Resultsmentioning

confidence: 99%

Living with advanced heart failure: A qualitative study

et al. 2020

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Introduction Information about how patients with advanced heart failure (HF) live and cope with their disease remains scarce. The objective of this study was to explore, from phenomenological and holistic perspectives, the experiences of patients suffering from advanced HF, attended at home in the primary care setting in 2018. Materials and methods Qualitative study conducted in 4 primary healthcare centers in Barcelona (Spain). Twelve in-depth interviews were conducted in advanced HF patients, aged over 65 and visited regularly at home. We developed a purposeful sampling, accounting for variability in gender, age, and socioeconomic level. Leventhal’s framework was used to analyze the interviews. Results Participants received insufficient and contradictory information about HF. They talked about their cognitive representation and claimed a better communication with healthcare professionals. Due to their advanced age, subjects considered their daily living limitations to be normal rather than as a consequence of HF. Gender differences in emotional representation were clearly observed. Women considered themselves the keystone of correct family “functioning” and thought that they were not useful if they could not correspond to gendered societal expectations. Cognitive coping strategies included specific diets, taking medication, and registering weight and blood pressure. Nevertheless, they perceived the locus of control as external and felt unable to manage HF progression. Their emotional coping strategies included some activities at home such as watching television and reading. Social support was perceived crucial to the whole process. Conclusions Locus of control in advanced HF was perceived as external. Healthcare professionals should adapt emotional health interventions in patients with advanced HF based on a gender perspective. Social support was found to be crucial in facing the disease. Patients reported poor communication with healthcare professionals.

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“…A recent review of qualitative literature on heart failure proposes a characterization of patient knowledge based on content, development, application, communication, and experience, highlighting that patient knowledge is implicit, explicit, and dynamic. 41 Through such work, patients are knowledge workers. A knowledge worker is a term that has been traditionally applied to professionals who conduct thinking and reasoning as part of their work.…”

Section: Patient Is a Knowledge Workermentioning

confidence: 99%

Patients Are Knowledge Workers in the Clinical Information Space

Papautsky

Patterson

2021

Appl Clin Inform

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Background Limited research exists on patient knowledge/cognition or “getting inside patients' heads.” Because patients possess unique and privileged knowledge, clinicians need this information to make patient-centered and coordinated treatment planning decisions. To achieve patient-centered care, we characterize patient knowledge and contributions to the clinical information space. Methods and Objectives In a theoretical overview, we explore the relevance of patient knowledge to care provision, apply historical perspectives of knowledge acquisition to patient knowledge, propose a representation of patient knowledge types across the continuum of care, and include illustrative vignettes about Mr. Jones. We highlight how the field of human factors (a core competency of health informatics) provides a perspective and methods for eliciting and characterizing patient knowledge. Conclusion Patients play a vital role in the clinical information space by possessing and sharing unique knowledge relevant to the clinical picture. Without a patient's contributions, the clinical picture of the patient is incomplete. A human factors perspective informs patient-centered care and health information technology solutions to support clinical information sharing.

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Knowledge among patients with heart failure: A narrative synthesis of qualitative research

Cited by 8 publications

References 143 publications

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Living with advanced heart failure: A qualitative study

Patients Are Knowledge Workers in the Clinical Information Space

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