Regner Birkelund

A companionship between strangers – the hospital environment as a challenge in patient–patient interaction in oncology wards

AIM To present an identification and discussion of the impact of the hospital environment on interaction among people with cancer. BACKGROUND In recent years, researchers have focused on identifying and describing features of the hospital environment that promote healing, recovery and well-being. It has been discovered that architectural features affect hospitalized patients both positively and negatively. But the research has failed to include fellow patients as part of the hospital environment. DESIGN A qualitative approach influenced by ethnography. METHOD Participant observation and individual qualitative interviews were used to collect data. From a total of 85 observed people with cancer 10 men and 10 women were interviewed. Data were collected over 6 months in 2010-2011 and analysed using inductive thematic analysis. FINDINGS Patients had ambiguous views regarding their fellow patients and the hospital environment. The hospital environment imposed conditions that caused stress factors such as the loss of personal privacy and control, but it also offered the possibility of good company and support from fellow patients. Refuge from fellow patients was hard to achieve and the fact that personal conversations might be overheard by fellow patients caused patients to withhold important information from healthcare professionals. Nevertheless, patients accepted the hospital environment uncritically, with resignation or with silent rebellion. Despite the challenges, 18 of 20 patients preferred multiple-bed rooms with the company of fellow patients. CONCLUSION The influence of the hospital environment on hospitalized people with cancer and their interpersonal interaction needs to be acknowledged by healthcare professionals. In addition, evidence-based hospital design must include research into patient preferences and arguments. Further investigation is needed.

Cancer patients and positive sensory impressions in the hospital environment: a qualitative interview study

This study explores how cancer patients experience the meaning of positive sensory impressions in the hospital environment such as architecture, decoration and the interior. Data were obtained at a general hospital in Denmark by interviewing six cancer patients at two different wards. The analysis process was guided by the hermeneutical-phenomenological theory of interpretation as presented by the French philosopher Paul Ricoeur. Two main themes were identified: to preserve identity and positive thoughts and feelings. The participants experienced that positive sensory impressions in the hospital environment had a significant impact on their mood, generating positive thoughts and feelings. A view to nature also helped them to forget their negative thoughts for a while. The possibility of having a view helped some cancer patients to connect with good memories and personal life stories that enabled them to recall some of their feelings of identity. This paper adds knowledge about how cancer patients experience sensory impressions in the hospital environment. An environment that provides homeliness and offers a view to nature seems to help some patients to preserve their identity. Furthermore, positive sensory impressions and the opportunity for recreation through environmental facilities strengthen the patients positive thoughts and feelings.

Refusing Implantable Cardioverter Defibrillator (ICD) Replacement in Elderly Persons—The Same as Giving Up Life: A Qualitative Study

More than 20% of implantable cardioverter defibrillators (ICDs) and cardiac resynchronization therapy (CRT) devices are implanted in the elderly population aged 80 years or older. In recent scientific literature it is suggested to consider termination of ICD therapy, rather than ICD replacement, in this patient group. The aim of this study was to explore the experiences of persons above 80 years of age concerning replacement of the ICD battery, and the shared communication and decision making with healthcare professionals.

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.

Normativity under change Older persons with implantable cardioverter defibrillator

Background: In modern society, death has become ‘forbidden’ fed by the medical technology to conquer death. The technological paradigm is challenged by a social-liberal political ideology in postmodern Western societies. The question raised in this study was as follows: Which arguments, attitudes, values and paradoxes between modern and postmodern tendencies concerning treatment and care of older persons with an implantable cardioverter defibrillator appear in the literature? Aims: The aim of this study was to describe and interpret how the field of tension concerning older persons with an implantable cardioverter defibrillator – especially end-of-life issues – has been expressed in the literature throughout the last decade. Methods: Paul Ricoeur’s reflexive interpretive approach was used to extract the meaningful content of the literature involving qualitative, quantitative and normative literature. Analysis and interpretation involved naive reading, structural analysis and critical interpretation. Ethical considerations: The investigation complied with the principles outlined in the Declaration of Helsinki. Findings and discussions: The unifying theme was ‘Normativity under change’. The sub-themes were ‘Death has become legitimate’, ‘The technological imperative is challenged’ and ‘Patients and healthcare professionals need to talk about end-of-life issues’. There seems to be a considerable distance between the normative approach of how practice ought to be and findings in empirical studies. Conclusion: Modern as well as postmodern attitudes and perceptions illustrate contradictory tendencies regarding deactivation of the implantable cardioverter defibrillator and replacement of the implantable cardioverter defibrillator in older persons nearing the end of life. The tendencies challenge each other in a struggle to gain position. On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient’s life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability.

Empowered to gain a new foothold in life - A study of the meaning of participating in cardiac rehabilitation to patients afflicted by a minor heart attack

This study aimed to investigate what it means to patients afflicted by a minor heart attack to participate in cardiac rehabilitation (CR). CR is well-established internationally to support patients towards moving forward in satisfying, healthy, and well-functioning lives. Studies indicate that patients achieve improvement in quality of life when participating in CR. However, knowledge of how patients are supported during CR is sparse. Moreover, knowledge of what participating in CR means to patients afflicted by a minor heart attack is lacking. In-depth knowledge in this area is crucial in order to understand these patients’ particular gains and needs. In a phenomenological-hermeneutic frame field observations, focus group interviews, and individual interviews were conducted among 11 patients during and after their participation in CR. Field notes and transcribed interviews underwent three-phased interpretation. It was found that patients were supported to gain renewed balance in their lives during CR. Three themes were identified: (1) receiving a helpful but limited caring hand, (2) being supported to find new values in life, and (3) developing responsibility for the remaining time. The patients were carefully guided through a difficult time and supported to continue in healthy everyday lives. They were given hope which enabled them to find themselves a new foothold in life with respect to their own sense of well-being. This guidance and a sense of hopefulness were provided by heart specialists and more seasoned heart patients. In conclusion, patients were empowered to achieve a healthier lifestyle and improve their personal well-being during CR. However, structural barriers in the programme prevented adequate support regarding the patients’ total needs. Knowledge of the benefits of CR emphasizes the significance of the programme and highlights the importance of high inclusion. Efforts should be made to develop more flexible and longer lasting programmes and further involvement of relatives must be considered.This study aimed to investigate what it means to patients afflicted by a minor heart attack to participate in cardiac rehabilitation (CR). CR is well-established internationally to support patients towards moving forward in satisfying, healthy, and well-functioning lives. Studies indicate that patients achieve improvement in quality of life when participating in CR. However, knowledge of how patients are supported during CR is sparse. Moreover, knowledge of what participating in CR means to patients afflicted by a minor heart attack is lacking. In-depth knowledge in this area is crucial in order to understand these patients’ particular gains and needs. In a phenomenological-hermeneutic frame field observations, focus group interviews, and individual interviews were conducted among 11 patients during and after their participation in CR. Field notes and transcribed interviews underwent three-phased interpretation. It was found that patients were supported to gain renewed balance in their lives during CR. Three themes were identified: (1) receiving a helpful but limited caring hand, (2) being supported to find new values in life, and (3) developing responsibility for the remaining time. The patients were carefully guided through a difficult time and supported to continue in healthy everyday lives. They were given hope which enabled them to find themselves a new foothold in life with respect to their own sense of well-being. This guidance and a sense of hopefulness were provided by heart specialists and more seasoned heart patients. In conclusion, patients were empowered to achieve a healthier lifestyle and improve their personal well-being during CR. However, structural barriers in the programme prevented adequate support regarding the patients’ total needs. Knowledge of the benefits of CR emphasizes the significance of the programme and highlights the importance of high inclusion. Efforts should be made to develop more flexible and longer lasting programmes and further involvement of relatives must be considered.

Raising a beautiful swan: a phenomenological-hermeneutic interpretation of health professionals’ experiences of participating in a mealtime intervention inspired by Protected Mealtimes

ABSTRACT The British concept named Protected Mealtimes is known for stopping all non-acute activities and giving health professionals an opportunity to focus on providing patients their meals without being interrupted or disturbed. PM involves a cultural and behavioural change in the clinical setting, since health professionals are asked to adjust their daily routines. This study investigate how health professionals experience participating in a mealtime intervention inspired by the concept of Protected Mealtimes and intend to change mealtime practices. Three focus group interviews was conducted and included a total of 15 interdisciplinary staff members. After transcribing the interviews, the text material was analysed and interpreted in a three-methodological-step process inspired by the French philosopher Paul Ricoeur. In the analysis and interpretation three themes was identified. The themes were: (1) a chance towards a new and better scene; (2) a step towards a more neurologically friendly environment; and (3) a renewed view of the neurological patients. This study concludes that to the health professionals, the intervention was meaningful in several ways because it created structure during mealtimes and emphasized the importance of creating a calm environment for both patients and health professionals. The intervention was described as an eye-opening and well-regarded event in the field of neurological care that facilitated community, and reflections on nursing care and professional identity were expressed.

Longing for homeliness: Exploring mealtime experiences of patients suffering from a neurological disease

BACKGROUND Many patients suffering from a neurological disease experience eating difficulties during mealtimes in the hospital. Consequently, they often refrain from eating in public places to avoid potentially awkward situations. Eating is an essential part of life, providing patients with comfort during their hospitalisation. Therefore, attention should be paid to these patients, who encounter eating difficulties to foster a positive mealtime experience. AIM To study what patients afflicted with a neurological disease experience and assign meaning when participating in mealtimes during hospitalisation. METHOD Ten semi-structured interviews with patients were conducted and recorded. After transcription the text was analysed, and interpreted compromising three methodological steps inspired by the French philosopher, Paul Ricouer. FINDINGS Three themes were identified through data analysis and interpretation: i) The missing feeling of homeliness, ii) The battle between socialisation vs. isolation, and iii) The sense of time, rhythm, and presence. CONCLUSIONS To patients suffering from a neurological disease, mealtimes are not only a manageable task, but also a part of existential care that leads to positive experience. Aesthetic elements were shown to have the potential of making the patients feel comfortable and homely when hospitalised. This was important, as our study also identified that patients were longing for homeliness when participating in mealtimes during hospitalisation. RELEVANCE TO CLINICAL PRACTICE Our findings emphasised the need of proceeding to interventions that includes mealtime assistance and protects the mealtime activity. Hence, it informs hospital organisations of the importance of restructuring mealtime environment, so that existential care can take place.

S7D:5 The diagnostic phase of lupus – being in a standstill-of-life

Purpose To investigate the changes in basic life conditions over time from the perspective of female patients with systemic lupus erythematosus (Lupus). This presentation concerns experiences around the diagnostic phase of Lupus. Method From 2013 to 2015, 43 individual interviews were performed with 15 female patients. Data were analysed according to the methodology of Human Science Phenomenology, which aims at collecting a common meaning-structure of human experiences. By considering basic condition of time, space, body and relationships, deeper knowledge of patient experiences can be reached. Results Mean age was 45.6 years and mean disease duration 14.8 years. The time to diagnosis after the first symptoms varied from 2–54 months (mean: 21 months, SD: 16 months). The essential experience of going through the diagnostic phase was found to be in a Standstill-in-life constituted by three existential themes: The experience of an altered perception of time and space while being exposed to the many medical examinations and tentative diagnosis situated the patient in a passive stance while waiting for clarification. The acute or changing symptoms made daily life uncertain as the normal bodily reliance changed and interpreted as standing on an uneven ground. Having the final Lupus diagnosis represented a deep existential change in personal relationships with self and others, and marked a substantial turning point in life. Conclusion The diagnostic phase of Lupus is often protracted over several years. This study shows how going through the diagnostic phase initiates a significant change in the basic life conditions. The phase represents a demanding existential situation. Support through the diagnostic phase, by considering the patient’s existential challenge and incorporate this in rehabilitation programmes would emancipate patients through a demanding time and be a novel contribution to patient support.

Heart shaking transitions: a phenomenological-hermeneutic study of patients' experiences in cardiac rehabilitation

Purpose: Approximately 10 000 people in Sweden suffer from sudden cardiac arrest outside the hospital each year. Cardiopulmonary resuscitation (CPR) is started in about half of the cases. Treatment ...Background: Chest pain is one of the most common reasons for hospital admissions and more than 50 % of the patients admitted are diagnosed as non-cardiac and discharged without a clear explanation ...The purpose was to investigate how a negative life event (NLE) affects perceived psychosocial stress, recovery and running economy (RE). Competitive runners were monitored in a prospective non-experimental cohort study over one full training season in which they experienced the same unplanned severe NLE. Sixteen runners recorded stress and recovery scores (RESTQ-Sport) every week. The average scores over 3 weeks before the NLE were used as a baseline and were compared to scores during the week of the NLE (week 0), week 1and week 2. Seven runners completed a submaximal treadmill test before and after the NLE. Repeated measures ANOVA’s revealed that most scores on general stress scales were increased in week 0 and 1. Of the general recovery scales, “general well-being” was decreased in week 0 and 1, “social” and “physical recovery” were decreased in week 0. No changes in the sport-specific stress scales were found. However, two of the sport-specific recovery scales were decreased in week 0. An impaired RE was shown 3 weeks after the NLE. Therefore, it is important to know what is going on in an athlete’s life, because stressful life events alter RE after the stress and recovery already returned to normal levels.