Living with chronic heart failure (CHF) often involves lifelong contact with health care, more or less frequently, depending on fluctuating health-generating disruptions in everyday life. To reduce the influence on continuity in life, health-care professionals should preferably focus on supporting patients in managing their daily lives, based on their perspective. The aim of this study was to describe how the interaction in health-care encounters contributes to either continuity or discontinuity in the daily life for persons with CHF. Interviews with 18 participants were carried out, using the grounded theory method, through data collection and analysis. Two core concepts were constructed from data which reveal a model that illuminates the characteristics of the encounters, the actions of health-care professionals and the normative discourse. Patient-centred agenda consists of the categories: "Experiencing a subordinate approach," "Objectifying during the encounter" and "Expected to be compliant." This describes how health-care professionals enhance discontinuity in daily life by using a paternalistic approach in the encounter. Person-centred agenda consists of the categories: "Experiencing an empowering approach," "Person-centredness during the encounter" and "Expected to be capable." It describes how participants perceive that health-care professionals enable them to deal with everyday life which enhances continuity. The findings highlight the importance of health-care professionals' attitudes and communication in encounters with patients. Health care must be designed to support and promote patients' own strategic thinking by strengthening their self-image to enhance continuity in everyday life. The experience of discontinuity is based on the prevailing health-care culture which focuses on disease and medical treatment and regards it as superior to the illness experience in an everyday life context. We therefore strongly suggest a paradigm shift in the health-care organisation and culture in order to support the patients in their efforts to live a meaningful, rich life, in spite of the chronic illness CHF.

Living with a chronic disease like chronic heart failure (CHF) results in disruptions, losses, and setbacks in the participants' daily lives that affect health and well-being. By using grounded theory method, we illuminate whether persons with CHF experience discontinuity in life and, if so, what helps them to preserve and strengthen continuity in their daily lives. Thirteen individual interviews and one group interview with five participants, aged 62 to 88 years, were carried out. Through data collection and data analysis, we constructed three concepts that make up a model illustrating the participants' experiences in daily life in relation to corporeality, temporality, and identity: experiences of discontinuity, recapturing approaches, and reconciliation. The first concept, experiences of discontinuity, was constructed from the following categories: the alienated body, the disrupted time, and the threatened self. The second concept, recapturing approaches, consists of categories with continuity creative constructions: repossessing the body, maintaining a façade, seizing the day, restoring the balance of time, and preserving self. These actions are intended to overcome problems and master changes in order to maintain balance in daily life through constructions that recreate normality and predictability. The third concept, reconciliation, was constructed from three categories: feel normal, set to adjust, and be positioned. These categories describe how the participants minimize their experiences of discontinuity by recapturing approaches in order to reconcile with various changes and maintain continuity in daily life. Our findings provide a fresh perspective on continuity that may contribute to the development of significant interventions in continuity of care for persons with CHF. However, continuity requires that healthcare systems support each patient's ability to manage change, reorientation, and adjustment to the new situation in order to make it easier for the patient to create and continue living their daily lives as they desire.

Background

Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin’s perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF.

Methods

This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin (n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants’ perceptions of the phenomenon.

Results

The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin’s perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities.

Conclusions

Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of “being in good hands” sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

Aims and Objectives: This study aimed to describe nurses’ perceptions 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 seems to be less explored in this context. 

Design: A qualitative descriptive study with a phenomenographic approach. 

Methods: Four focus groups were chosen to collect the data. A purposeful sampling of nurses (n=14) with experience in caring for patients with heart failure was recruited from hospital-connected heart failure clinics, primary healthcare centres and municipal home healthcare settings in south-western Sweden. The COREQ checklist was used in this study. 

Results: The nurses’ various perceptions of continuity of care for patients with heart failure were categorised as: 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.