Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Sedlar, Nataša; Lainščak, Mitja; Farkaš, Jerneja

doi:10.3390/ijerph17082666

Cited by 16 publications

(16 citation statements)

References 40 publications

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“…Semi-structured interviews with patients followed the interview guide (Table 1), developed by the authors on the basis of the relevant scientific literature and described elsewhere. 25 Patients were asked to describe their HF selfcare practices and main barriers/facilitators to effective selfmanagement. Open-ended questions were used to guide the conversation.…”

Section: Instruments and Data Collectionmentioning

confidence: 99%

Self‐care perception and behaviour in patients with heart failure: A qualitative and quantitative study

2021

Self Cite

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Background and objective Self-care strategies in heart failure (HF) are effective for disease management, yet adherence in many patients is inadequate. Reasons are presumably multifactorial but remain insufficiently investigated; thus, we aimed to analyse self-care adherence and associated factors in outpatients with HF. Methods and results To measure self-care levels and explore barriers and facilitators to self-care adherence in patients with HF, quantitative study using the European Self-Care Behaviour Scale (EHFScBS-9) (n = 80; NYHA II-III, mean age 72 ± 10 years, 58% male) and qualitative study using semi-structured interviews (n = 32; NYHA II-III, mean age 73 ± 11, 63% male) were conducted. We detected lowest adherence to regular exercise (39%) and contacts with healthcare provider in case of worsening symptoms (47%), whereas adherence was highest for regular medication taking (94%). Using the EHFScBS-9 standardized cut-off score ≤ 70, 51% of patients reported inadequate self-care. Binary logistic regression analysis showed significant influence of education (OR = 0.314, 95% CI: 0.103-0.959) and perceived control (OR = 1.236, 95% CI: 1.043-1.465) on self-care adequacy. According to the situation-specific theory of HF self-care, most commonly reported factors affecting the process of self-care were knowledge about HF self-care behaviours (84%), experience with healthcare professionals (84%), beliefs about their expertise (69%) and habits related to medication taking (72%). Among values, working responsibilities (53%) and maintenance of traditions (31%) appeared as the most prevalent socially based values affecting motivation for selfcare. Situational characteristics related to the person (self-confidence, 53%; adaptive coping strategies, 88%), problem (burdensome breathing difficulties, 56%; co-morbidities, 81%) and environment (practical support from family/caregivers, 59%; financial difficulties, 50%) were also commonly reported. Conclusions Various factors, including health-related beliefs, habits and socially based values, need to be taken into account when planning self-care interventions in patients with HF. A patient tailored approach should be based on adequate patient evaluation, taking into consideration the particular personal and social context.

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Section: Instruments and Data Collectionmentioning

confidence: 99%

Self‐care perception and behaviour in patients with heart failure: A qualitative and quantitative study

2021

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“…Unique to the present study is that the sample was relatively young (mean age=35.6y), but had coped with chronic seizures for an average of 15.4 years. In contrast, studies of heart failure, included patients over 66 years [9,21]. As revealed in other studies [2,9,21] women in our study also provided most of the care.…”

Section: Discussionmentioning

confidence: 61%

“…In contrast, studies of heart failure, included patients over 66 years [9,21]. As revealed in other studies [2,9,21] women in our study also provided most of the care. However, while these women included mothers, sisters and grandmothers, some participants relied on their very young daughters for day-to-day help and seizure safety.…”

Section: Discussionmentioning

confidence: 61%

“…While various family members provided differing levels of comfort and support, and at different times, family roles were changed to accommodate disease limitations, specifically for participants who themselves were parents and/or spouses. Similar to the caregiving experiences of family caregivers in multiple sclerosis [6] and chronic heart failure [21], these changed roles were often discordant with expected social roles. Although the traditional labels of caregiver, or carer were less desirable, finding suitable alternatives was hard.…”

Section: Discussionmentioning

confidence: 82%

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Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Dewar¹,

Ranit

Pieters³

2021

Seizure

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To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. Methods: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18-68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. Results: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decisionmaking. A clinically useful Theory of Reciprocal Burden resulted from our study. Conclusions: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

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“…The care delivered by nurses should contain targeted information on care and medical treatment to offer psychosocial support based on the needs of the patient and the patient's next of kin (Ågren et al, 2012; Glogowska et al, 2015; Jaarsma et al, 2014; McDonagh et al, 2011). Caring for patients with HF is a complex task because patients have different care needs in various situations, and the patients and their next of kin have expectations about the nurse's ability to help them (Sedlar et al, 2020). Nurses also facilitate collaboration between healthcare professionals in different organisations (Nordfonn et al, 2019; Olano‐Lizarraga et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Nurses’ experiences of continuity of care for patients with heart failure: A thematic analysis

Östman

Bäck‐Pettersson

Sundler

et al. 2020

Journal of Clinical Nursing

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Aims and Objectives This study aimed to describe nurses’ experiences of continuity of care for patients with heart failure. Background Heart failure is a life‐influencing condition that causes varying care needs over time with risks of fragmentation. Nurses play an important role in caring for patients with heart failure. However, nurses’ experiences of continuity of care seem to be less explored in this context. Design A qualitative study with a descriptive design. Methods Four focus groups were chosen to collect the data, and the analysis was made by using a method for thematic analysis. A purposeful sampling of nurses (n = 14) with experiences from hospital‐connected heart failure clinics, primary healthcare centres and municipal home healthcare settings was recruited. The COREQ checklist was used in this study. Results The nurses’ experiences of continuity of care for patients with heart failure were described in four themes: access and flexibility, responsibility and transparency, trustful and caring relationships and communication and collaboration. Conclusions The results indicate that nurses have an excellent position to act as the “hub” in caring for patients with heart failure, but they need to have the possibility of networking and establishing trusting relationships with their colleagues. From the nurses’ point of view, mutual trust between the nurse, the patient and the patient's next of kin is crucial for promoting and maintaining continuity of care in patients with heart failure. Relevance to clinical practice To promote continuity of care for patients with heart failure, nurses expressed the necessity of establishing trusting relationships in a continuity‐promoting organisation with seamless coordination. Nurses can be the “hub” supporting a person‐centred care approach based on the patients’ needs. There seems to be a need for better collaboration with common guidelines across and within primary healthcare centres, hospital‐connected heart failure clinics and municipal home healthcare settings.

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Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Cited by 16 publications

References 40 publications

Self‐care perception and behaviour in patients with heart failure: A qualitative and quantitative study

Self‐care perception and behaviour in patients with heart failure: A qualitative and quantitative study

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Nurses’ experiences of continuity of care for patients with heart failure: A thematic analysis

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