Quality in care requires kindness and flexibility - a hermeneutic-phenomenological study of patients' experiences from pathways including transitions across healthcare settings.

BACKGROUND: The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings. METHODS: Within a hermeneutic-phenomenological approach, interviews were conducted with three women and five men with various diagnoses and care paths between 30 and 75 years of age. Data underwent a three phased thematic analysis leading to three themes. RESULTS: Patients with various illnesses' experiences of quality of care is described in the themes being powerless in the face of illness; burdensome access and navigation; and being in need of mercy and striving for kindness. This highlights that patients' experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition. CONCLUSIONS: This hermeneutical-phenomenological study sheds light on the lived experiences of people who are at various stages in their care paths with transitions across healthcare settings. Although our findings are based on the lived experiences of 8 people in a Danish context, in light of the discussion with nursing theory and other research, the results can be reflected in two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, were essential for their experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.

Wearables in real life: A qualitative study of experiences of people with epilepsy who use home seizure monitoring devices.

OBJECTIVE: To explore the experiences of people with epilepsy using wearables for home seizure monitoring. METHODS: Nine people with epilepsy participated in eighteen semistructured individual interviews before and after home monitoring with wearable seizure monitoring equipment. An open-ended interview guide was used to encourage the participants to elaborate on their thoughts and experiences. Interviews were analyzed using a three-level process inspired by the philosopher Max van Manen. RESULTS: The overall findings illustrate that patients experienced being placed in the spotlight when wearing wearables. The meaning of being in this spotlight is reflected in three themes: Becoming vulnerable through exposure, Standing alone while being with others, and Having a renewed life situation. The analysis and interpretation showed that although the participants expressed readiness to use the wearables, they were less willing to do so after a few days of monitoring. The visibility of the devices influenced how they experienced themselves and were perceived by others. CONCLUSION: For people with epilepsy, wearables are more than just technical tools; they have a significant existential impact on everyday life. Wearables spotlight the epilepsy condition, and this causes people with epilepsy to experience an existential disruption, as they experience being exposed and vulnerable. This results in a renewed way of perceiving oneself. Nevertheless, wearables also validate epilepsy symptoms, thereby reducing the uncertainty related to epilepsy.

Supporting existential care with protected mealtimes: patients' experiences of a mealtime intervention in a neurological ward.

AIM: The aim of this study was to explore the experiences of patients who were admitted to the neurological ward during an intervention - inspired by Protected Mealtime - that changed the traditional mealtime practice. BACKGROUND: Mealtimes are busy events in hospitals and patients are often interrupted by high-priority tasks (e.g. taking blood samples) while eating. Protected mealtimes is a British concept that changes the organizational structure of mealtimes and provides a focus on the mealtime by ceasing all non-acute activities while patients are eating. DESIGN: Influenced by protected mealtimes and based on the British Medical Research Council (MRC) guidelines, a clinical intervention called Quiet Please was developed, modified and tested in a department of neurology in November 2014. METHODS: To evaluate the Quiet Please intervention, 13 semi-structured interviews were conducted with patients who were admitted to the neurological ward. The interviews were recorded and transcribed. These data were thoroughly analysed and interpreted with inspiration from the French philosopher, Paul Ricouer. FINDINGS: Three themes were identified from the analysis and interpretation: (1) being powered by the bell; (2) being embraced by calmness and aesthetics and (3) being in a trust-bearing agreement. CONCLUSIONS: Patients experienced mealtimes as meaningful events that nourished them in an existential manner because the calming and aesthetically pleasing environment made them feel embraced and allowed them to reflect on the day for a while. The mealtime change, influenced by protected mealtimes, made the patients feel recognized as humans and established positive mealtime experiences that were considered professional and trust bearing.