BackgroundRelatives’ support is an important factor in how well people with chronic heart failure (CHF) manage their illness and everyday life. Deepening professionals’ understanding of the content of relatives’ invisible care activities, often characterized as care burden, is necessary to strengthen support services.ObjectiveTo explore the next of kin’s experiences of invisible care and the inherent responsibilities in caring for a relative with CHF.Design, setting, and methodsRelatives were recruited from CHF outpatient clinics and home care services. Seventeen women and two men were interviewed, age range 45–83 years; 12 were partners, and seven were daughters. The qualitative interviews were taped and transcribed and thematic cross-case analyses were performed.ResultsTwo main themes were revealed. The first, “being on the alert”, refers to a perceived need, real or assumed, to be aware day and night, whether present with the patient or not, that occupies the mind, emotions, and body. The second theme, “being a forced volunteer”, refers to two different dimensions: relatives’ own perceptions of responsibility with regard to the patient’s needs; and voiced or silent expectations from the patient, family members, and health personnel that the relative will help the patient. Both findings appeared to have positive and negative impacts on the relationship with the patient.ConclusionThe identified themes reflect how challenging being a next of kin of CHF patients can be. The results may deepen professionals’ understanding of the relatives’ invisible care burden and the importance of their subjective task-related feelings. More studies on invisible care and the attendant responsibilities are needed and also on relatives’ inherent resources.
PurposePrevious studies show that the hospital environment and the behavior of health care personnel may predict patients’ perceptions of care quality. The aim of the study was to explore changes in perceived care quality from the patients’ perspective (QPP) when hospital services are relocated from an old to a new high-tech hospital and to describe what is important for patients in the high-tech hospital.Patients and methodsA comparative cross-sectional design was used. The questionnaire QPP, which is based on a theoretical model of the quality of care comprising four quality dimensions, was used. Data were collected in 2015 (old hospital) and 2016 (new hospital), with 253 and 324 respondents, respectively, by consecutive sampling. Comparative statistics was used to test differences between patients’ care quality perceptions (perceived reality [PR] and subjective importance [SI]) (P≤0.05).ResultsThe patients rated PR of all four quality dimensions (the care organization’s physical-technical conditions and sociocultural approach and the caregivers’ medical-technical competence and identity-oriented approach) higher in the new hospital. However, only the two quality dimensions concerning the care organization were rated significantly more highly. On an item level, five of the 27 items scored significantly higher on patients’ SI than on patients’ PR of the care in the new hospital, indicating a quality deficiency from the patients’ perspective. This comprised receiving effective pain relief, receiving examination and treatment within an acceptable waiting time, receiving useful information on self-care, receiving useful information on which doctors were responsible for their medical care, and having a comfortable bed.ConclusionThe increase in care QPP was associated with improved environmental conditions, and no significant improvement in care quality was associated with the health care personnel. The results indicate that being in a high-tech environment does not improve patients’ perceptions of care quality provided by health care personnel. The results gave valuable information for quality improvement in clinical practice, based on the patients’ perspective.
Informal care to homecare nursing patients Background: Many homecare nursing patients receive informal care from their family and friends. Meanwhile, there is little knowledge about the extent and content of informal care from the agents in a patient's social network. Objective: The purpose of this study was to examine the network of homecare nursing patients, as well as the frequency and content of the informal care from family and friends. In addition, we wanted to study whether there were interrelationships between formal and informal care. Method: A cross-sectional study among homecare nursing patients in a municipality in the eastern area of Norway. From a sample of 166 patients, 127 patients (76 %) completed a questionnaire during the autumn of 2013. Results: Most of the patients had a satisfying social network and received informal care from both family and friends. The content of informal care was primarily practical support. In addition, there was a significant correlation between informal and formal care. Patients receiving multiple visits daily from homecare nursing staff also received informal care from family members more often. Conclusion: Homecare nursing patients receive various types of informal care, which is mainly practical support. In addition, the study indicates that there is a relationship between an increase in patients' need for care and the extent of formal and informal care.
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