Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease (AD). The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses' lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses' lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended "lived space" with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective.

In this study, we explored life satisfaction and sense of coherence in relation to biopsychosocial variables in individuals at risk for the development of familial Alzheimer's disease. Forty nine individuals (response rate: 96%) were interviewed. Life satisfaction was found to be high for the majority of participants. Those who were older than the expected age of onset of disease, those <6 years' inclusion in the Familial Alzheimer's disease biomarker study, and males tended to experience positive psychological health. Sense of coherence was positively associated with satisfaction with life as a whole, psychological health, vocation, and economy. Women seem to be more vulnerable than men, and attention should be given to those who have not passed the age of expected symptom onset. Early and recurrent counseling and psychosocial support were found to be essential. Issues related to vocation and economy are areas of concern, and are closely associated with sense of coherence, life satisfaction, and psychological health. This study emphasizes the importance of professional teams working together with the patient and their families.

There is an increased interest in exploring the use of sensory rooms in psychiatric inpatient care. Sensory rooms can provide stimulation via sight, smell, hearing, touch and taste in a demand-free environment that is controlled by the patient. The rooms may reduce patients' distress and agitation, as well as rates of seclusion and restraint. Successful implementation of sensory rooms is influenced by the attitudes and approach of staff. This paper presents a study of the experiences of 126 staff members who worked with sensory rooms in a Swedish inpatient psychiatry setting. A cross-sectional descriptive survey design was used. Data were collected by a web based self-report 12-item questionnaire that included both open- and closed-ended questions. Our findings strengthen the results of previous research in this area in many ways. Content analyses revealed three main categories: hopes and concerns, focusing on patients' self-care, and the room as a sanctuary. Although staff initially described both negative and positive expectations of sensory rooms, after working with the rooms, there was a strong emphasis on more positive experiences, such as letting go of control and observing an increase in patients' self-confidence, emotional self-care and well-being. Our findings support the important principals of person-centred nursing and recovery-oriented mental health and the ability of staff to implement these principles by working with sensory rooms.

The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease.

CONCLUSION: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.

What is Known:

• Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles.

• Adolescents often have poor knowledge and understanding about their heart condition and the consequences.

What is New:

• Adolescents call for disease specific information regarding health issues of importance for them in daily life.

• Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

BACKGROUND: Patients with congenital heart disease (CHD) are in need of lifelong healthcare. For adolescents with CHD, this transfer to adult-care clinic can be difficult.

OBJECTIVE: The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic healthcare.

METHODS: This study has an exploratory design with a qualitative approach, where 13 adolescents with CHD and their parents (n = 12) were individually interviewed. The interviews were analyzed with content analysis.

RESULTS: The analysis of the adolescents' interviews resulted in 3 categories: change of relationships, knowledge and information, and daily living. The theme that emerged depicting the meaning of the categories found was Safety and control, indicating needs of continuity, knowledge, and taking responsibility. Analysis of the parents' answers gave 2 categories: change of relationship and daily living. The theme that emerged was safety and trust, indicating needs of continuity and shifting responsibility.

CONCLUSIONS: The transition must be carefully planned to ensure that adolescents can master new skills to manage the transfer to adult cardiologic healthcare. A structured program may facilitate and fulfill the needs of the adolescents and their parents, taking into consideration the aspects of trust, safety, and control. However, the content and performance of such a program must also be examined. We plan to undertake an extensive research project in the area, and this study will be a baseline for further research.

Background: Disasters affect close to 400 million people each year. Complex Emergencies (CE) are a category of disaster that affects nearly half of the 400 million and often last for several years. To support the people affected by CE, humanitarian assistance is provided with the aim of saving lives and alleviating suffering. It is widely agreed that funding for this assistance should be needs-based. However, to date, there is no model or set of indicators that quantify and compare needs from one CE to another. In an effort to support needs-based and transparent funding of humanitarian assistance, the aim of this study is to develop a model that distinguishes between levels of severity among countries affected by CE.

Methods: In this study, severity serves as a predictor for level of need. The study focuses on two components of severity: vulnerability and exposure. In a literature and Internet search we identified indicators that characterize vulnerability and exposure to CE. Among the more than 100 indicators identified, a core set of six was selected in an expert ratings exercise. Selection was made based on indicator availability and their ability to characterize preexisting or underlying vulnerabilities (four indicators) or to quantify exposure to a CE (two indicators). CE from 50 countries were then scored using a 3-tiered score (Low-Moderate, High, Critical). 

Results: The developed model builds on the logic of the Utstein template. It scores severity based on the readily available value of four vulnerability and four exposure indicators. These are 1) GNI per capita, PPP, 2) Under-five mortality rate, per 1 000 live births, 3) Adult literacy rate, % of people ages 15 and above, 4) Underweight, % of population under 5 years, and 5) number of persons and proportion of population affected, and 6) number of uprooted persons and proportion of population uprooted.

Conclusion: The model can be used to derive support for transparent, needs-based funding of humanitarian assistance. Further research is needed to determine its validity, the robustness of indicators and to what extent levels of scoring relate to CE outcome.

OBJECTIVE: There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma.

METHODS: In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation.

RESULTS: Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers.

CONCLUSIONS: Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma.

IMPLICATIONS IN CLINICAL PRACTICE: The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.

Healthcare-associated infections are the most frequent adverse event in healthcare delivery worldwide. The theory of planned behavior has proven helpful in hospital hygiene interventions and might be useful in community care. This study explored how medically-responsible nurses in Swedish community care perceived and ranked the impact of factors related to the theory of planned behavior, the factors" probability to change, enhancing the healthcare staff's adherence to infection control guidelines, and identified which theory of planned behavior subquestions should be focused on to enhance adherence to infection control. Medically-responsible nurses (n = 268) in Swedish communities answered a Web-based questionnaire regarding impact and probability to change theory of planned behavior factors in relation to infection control. Four theory of planned behavior factor constructs were found: (i) knowledge and encouragement from management; (ii) access and availability to materials and equipment, and interest among staff; (iii) influence by colleagues; and (iv) workload, and influence by patients and significant others. The theory of planned behavior factors are relevant for infection control in a home-like environment, and findings could be used as a basis for interventions enhancing hygiene in community care.

Background

Caring for dying children is complex and requires coordination of all resources.In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child’s critical and life threatening condition, there is always the possibility the child will not survive. The acuity and technical nature of the intensive care context can provide an obstacle in the transition to palliative care and furthermore conflict with the affected families’ needs.

Objectives

The study aim was to enlightening caring as it is represented in caring situations of dying children at PICU.

Methods

An Interpretative Phenomenological design was applied. The data collection was performed at three PICU in Sweden at 2011 and 2016. Caring situations of a total of 18 children were observed, six cases were estimated as end of life care or life threatening conditions. Nurses and parents were interviewed in direct connection to the observation.

Conclusions/Results

Preliminary findings showed that for nurses, it was a challenge to change perspective from curative to palliative care. Medical examinations and treatment was experienced to disturb the dying child thus causing unnecessary suffering. Parents found it difficult to leave their dying children even just for a moment and the space in PICU did not support closeness and parenting but rather separated the dying child from her/his family.In conclusion, these findings illuminates the importance of guidelines and training in palliative care in PICU. Children and their family ought to have the best care possibly when affected by life-limiting or life-threatening illness.

BACKGROUND: The preparation to become a critical-care nurse in Sweden consists of a college program. The programs need to meet a set of widely defined goals developed by the Board of Higher Education, but can differ in content and lay-out depending on the college curriculum. There is subsequently no pre-defined standards for the knowledge, competencies and capabilities a critical-care nurse should possess. This presents a problem for both employers, educators, nurses and students and can ultimately compromise patient safety.AIM: Our aim was to develop a final examination that would reflect theoretical knowledge, as well as practical skills and competencies for an entry-level critical care nurse.

METHOD: The content of the final examination was based on a previously developed assessment tool used for clinical rotations at our college. This assessment tool reflected the competencies stated by the national association of critical care nurses in Sweden (AnIva) as well as the goals required by the Board of Higher Education in Sweden. After development of the exam, which comprises a two-step assessment where the students´ skills and capabilities are assessed, and a theoretical part where the students´ nursing-care knowledge is assessed by explicit pre-determined standards, the exam was tested and then revised in several steps after several focus-group discussions with content-experts and students.

RESULT: The content-experts reported they were helped by having a set of explicit pre-determined standards to guide them. The students expressed similar sentiments as well as satisfaction from receiving “proof” of having reached an entry-level critical-care nurse level.IMPACT FOR PRACTICE: A set benchmark where knowledge-level and competency requirements are clarified for critical care nursing-practice aids students, educators and employers in setting goals for, and evaluating individuals working towards becoming a critical care nurse. This ultimately strengthens the profession and promotes patient safety.

Aim: The aim of this study was to investigate emergency nurses’ experiences of verbal handover from emergency medicalservices and through these experiences uncover patient safety issues in the handover situation.Methods: Design: The design is qualitative inductive and aims to deepen the understanding of the handover situation and touncover the nurses’ experiences in such a situation. Methods: A qualitative research process which takes its departure in patientsafety theory. Nine informants were interviewed and a content analysis was applied.Results: The results show that a lack of structure, lack of seeing the non-verbal communication, the nurses’ own requirement forfull control and the lack of active listening involves patient safety risks. Emergency nurses want a handover that is personal andprovides a comprehensive picture of the patient to support, deepen or contradict the verbal handover given.Practical implications: The non-verbal communication in the handover situation is key to understand the severity of the situationand give the nurses profane knowledge how to prepare the continuing nursing care. To further support the understanding of thesituation, information should be presented in chronological order.KeyWords: Communication, Handover, Patient safety

The objective of this study was to investigate the nurse ́approach to sound in an hightechnological pediatric intensive care unit. The method used derived from a theorethical perspective based on Patricia benner interpretative phenomenology.How the caregivers aknowledge the sounds in the Environment is based on their knowledge of how it affects the severly ill Children but also on the caring Culture. The result showed Three qualitative variations of approaches to sound in closeness to the critically ill Child. They are presented as follows: The room as a situation, the room as a workplace and the room as a place to rest. A central phenomenon uncovered in the observations were how the caring culture normalized the sound level to theextent that it was neglected, unless called upon as a direct reaction in combination with other signs of critical incidents. Sound was accepted at high levels close to the child's ears. Noise levels increased when a new child arrived in the room or when the round came in. A fundamental difference was uncovered when the children's room was approached as a room for recovery. Then nurses actively kept a low sound level andarranged interventions accordingly. No connections between childrens' gender, age or medical status could be found.

Background

The noise levels in adult intensive care is a well-researched phenomenon which constantly exceeds international and national recommendations.In the pediatric intensive care, the caregivers of the children work in a high tech environment as they are surrounded by sound from several sources of various kinds.How they understand and acknowledges these sounds negative effect on the child’s well-being depend on their individual knowledge and awareness of how sound can affect children negatively. However, for a critically ill child who comes to the intensive care unit, this is in most cases a new experience which in itself means greater stress.Both the environment itself and the noise levels.

Objectives

This study intends to investigate the nurses' approach to three sources of sound that contribute to high noise levels;alarms, doors that open and conversation.The theoretical perspective in the study is based on studies on caring culture.

Methods

Non Participation semi-structured qualitative observations were conducted in a pediatric intensive care unit of one of Sweden's metropolitan regions in the winter of 2014-2015.

Conclusions/Results

The results show that high noise levels are an overlooked phenomenon in the pediatric intensive care environment as it has given way to other priorities in the nurse's work.It is also clear that this depends on the department's caring culture as it prioritizes other things which results in normalizing high levels of noise as a part of the pediatric intensive care environment.

Objective: The objective of this study was to investigate the nurses’ approach to three sources of sound that contribute to high noise levels; alarms, doors that open and conversation.

Methods: Methods used derived from a theoretical perspective based on interpretive phenomenology and caring culture. In the pediatric intensive care, the caregivers of the children work in a high-tech environment as they are surrounded by sound from several sources. How caregivers understand and acknowledge how these sounds negatively affect a child’s well-being depends on their individual knowledge and awareness of how children are affected by sound. In most cases, coming into an intensive care unit is a new experience for a child. This causes greater stress, both from the environment itself as well as from sound levels. The method was built on a phenomenological perspective and an interpretive non-participation, semi-structured observations were conducted in a pediatric intensive care unit (PICU) of one of Sweden’s metropolitan regions in the winter of 2014-2015.

Results: The results show that noise is an overlooked phenomenon in the pediatric intensive care environment as it has given way to other priorities in the nurse’s work. It is also apparent that this depends on the department’s caring culture as it prioritizes other things, resulting in normalizing high levels of noise as a part of the pediatric intensive care environment.

Conclusions: Noise levels are not a priority in the department’s caring culture. High noise levels are permitted unreflectedly and appears to be a token of potency and an accepted part of the health care environment.

BACKGROUND: Despite the theoretical links between eating disorders and perfectionism, the definition of perfectionism in practice is complicated. The present study explored descriptions and experiences of perfectionism described by a transdiagnostic sample of patients.

METHODS: In-depth, semi-structured interviews were carried out with 15 patients. The interviews were analyzed by Thematic Analysis. A comparison between the patients' scorings on the Eating Disorder Inventory-Perfectionism scale was also performed.

RESULTS: Seven themes were found: The origins of perfectionism, Top performance, Order and self-control, A perfect body, Looking good in the eyes of others, A double-edged coping strategy, and A Sisyphean task. The women in this study did not emphasize weight and body as the main perfectionistic strivings. Core descriptions were instead order, self-control and top performances. All of the participants described the awareness of reaching perfectionism as impossible. Scorings of self-oriented perfectionism was significantly higher compared to socially prescribed perfectionism. No differences in the narratives related to perfectionism scores or eating disorder diagnoses were found.

CONCLUSIONS: The results showed that psychometric measures do not always capture the patients' definitions of perfectionism, but regarding that perfectionism serves as a means to regulate affects and may lead into an exacerbation of the eating disorder, and the development of obsessive-compulsive symptoms, it is important to investigate the personal definitions of perfectionism.

Purpose

To examine the relationship between child self-report and parent proxy report of health-related quality of life (HRQL) and how parents’ mental health status relates to the HRQL ratings 6 years after minor to severe injury of the child.

Materials and methods

This cross-sectional cohort study was performed at a regional pediatric trauma center in Stockholm, Sweden. The PedsQL 4.0 versions for ages 5–7, 8–12, and 13–18 years were completed by 177 child–parent dyads 6 years after injury to the child. The parents also rated their own mental health through the mental health domain (MH) in the SF-36 Health Survey.

Results

The children’s median age was 13 years (IQR 10–16 years), 54 % were males, and the median ISS was 5 (IQR 2–9). Most of the parents were female (77 %), born in Sweden (79 %), and half had university degrees. There was no statistically significant difference between child self-report and parent proxy report in any of the PedsQL 4.0 scales or summary scales. The levels of agreement between child self-report and parent proxy reports were excellent (ICC ≥ 0.80) for all scales with the exception of emotional functioning (ICC 0.53) which also was the scale with the lowest internal consistency in child self-report (α 0.60). Multiple regression analyses showed that worse parental mental health status correlated with worse child self-report and parent proxy report of children’s HRQL.

Conclusions

Children and their parents’ reports on child’s HRQL were in agreement. Decreased mental health in parents was associated with lower scores on parent proxy reports and child self-reports of HRQL after injury. The current investigation highlights the possible relationship between parent’s mental health status and children’s HRQL long after an injury, which should be considered in future investigations and in clinical care.

PURPOSE: To investigate the impact on health related quality of life (HRQL) during the first year after minor extremity injury and to determine whether there is a difference in recovery patterns and return to work between upper extremity injuries (UEI) and lower extremity injuries (LEI).

METHOD: A total of 181 adults' age 18 years or older randomly selected from patients admitted to an emergency department with minor injuries were studied. HRQL was measured using the Functional Status Questionnaire (FSQ) at 1-2 weeks, 3, 6, and 12-months post-injury. Pre-injury FSQ scores were measured retrospectively at admission. A quasi-least square (QLS) model was constructed to examine differences of FSQ scores at each measuring point for UEI and LEI.

RESULTS: Fractures of the knee/lower leg (25%) were the most frequently injured body area. Slips or falls (57%) and traffic-related events (22%) were the most common injury causes. The mean ISS was 4.2 (SD 0.86). Both groups had significant declines in the FSQ scores physical and social functioning at 1-2 weeks after injury. Patients with UEI made larger improvements in the first 3 months post-injury versus patients with LEI whose improvements extended over the first 6 months. None of the groups reached the pre-injury FSQ scores during the first post-injury year except in the subscale work performance where UEI exceeded the pre-injury scores. At 12 months post-injury, significant lower FSQ scores remained in the LEI group compared to the UEI group in intermediate activities of daily living (p=0.036, d 0.4) and work performance (p=0.004, d 0.7). The return to work at 3 months and 12 months were 76% and 88% for UEI and 58% and 77% for LEI. No significant differences were found between groups in the FSQ scale mental health and social interaction.

CONCLUSIONS: LEI had the highest impact on HRQL and return to work during the first year which exceeded the consequences of UEI. These findings contribute to the information about the consequences of injury in order to give sufficient prognostic information to patients and different stakeholders. Future investigations should aim to investigate specific minor extremity injuries and identify factors that facilitate recovery and return to work.

The Swedish legislation indicates that patients in the forensic psychiatric setting should be re-integrated into society through rehabilitative measures including nursing care. This was recognized by the National Board of Health and Welfare (i.e. Socialstyrelsen) in 2002, but concluded that there is a vast knowledge gap regarding the aim and the content of nursing care in forensic psychiatric settings. Still nursing care in forensic psychiatry is sparsely described. Recent research confirms this description of a knowledge gap and adds that there is a lack of structured nursing care in forensic psychiatry (Hörberg, 2012). Nonetheless, the content and outcome of nursing care in the forensic psychiatric setting is hard to visualize. The actual patient needs and problems has to be identified and defined. To meet this knowledge gap, structured and categorized descriptions of the patients’ nursing care needs need to be described. Frauenfelder et al., 2014) claims that NANDA could be the tool to label problems and risk diagnoses, although they call for further research.

The implementation of nursing diagnoses according to NANDA started in 2011, one year after Forensic Psychiatry Care Stockholm became one department, and the implementation process is still on-going. Previously, the forensic psychiatric care in Stockholm had been spread out over three different departments with dissimilar culture. The new management wanted a “unified department”, and one way to achieve this was to use NANDA as a tool for a common language in nursing care. The implementation started with a meeting with the ward managers and Registered Nurses. A project plan for the implementation was presented and discussed. The project leader met all RNs in the department in small groups to describe and motivate the use of NANDA. Up till now eleven wards have been involved and at least two meetings have been held at each ward. The project leader has participated at ward rounds and supervised the RNs in the use of NANDA. In conclusion, more RNs need to be engaged to continue the progress of the project. Another task is to find a less time consuming implementation process and to evaluate the implementation to this point. It is also important, further down the line, to introduce the tools Nursing Diagnoses Interventions (NIC) and Nursing Diagnoses Outcome (NOC) in the forensic psychiatric setting. Apart from a common nursing language, the use of standardized descriptions, actions and goals would fill the knowledge gap regarding aim and content of nursing care in forensic psychiatric settings (Escalada-Hernandez et. al., 2015).

Nurses who work in forensic environments, practice at the shifting interface of the criminal justice system and the health care system.  How they view those in their care, and more importantly, how they engage those in their care, is a significant concern for nursing.  Forensic clients are members of a highly stigmatized and stereotyped population. The ability of forensic mental health nurses to provide competent and ethical nursing care is often compromised by personal, social, and political animosity regarding crime, criminality, and mental disorder.  Pausing to reflect on the stories of clients and nurses, within a narrative context, evokes understanding, and contributes to the creation of person centered care.

In paper one, the coercive treatments experienced by a man who has spent many years in compulsory care in a variety of secure psychiatric settings is explored in response to his confession “I don’t dare to tell them I feel okay!” In paper two, how nurses transition to their roles as forensic nurses is considered as they straddle the custodial and therapeutic aspects of their work, often expressing concerns with their perceptions of “education of the fly” or “faking it ‘til you make it.” In paper three, the mental health contributions of nurses who practice in prisons and correctional institutions is captured in the words “that’s why I bought into this profession, to instill hope and recovery.”

Through the examination of these vignettes that have emerged through research and practice, participants will be engaged in an interactive discussion as we consider the implications of narrative nursing vis-à-vis the vast tensions that exist between theory, practice, and research in forensic mental health nursing.  Finally, the universal nature of these issues, highlighting contributions from Sweden, Germany and Canada will be illustrated.

PURPOSE: The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).

METHODS: Between 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children's Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.

RESULTS: Parents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.

CONCLUSIONS: Parental stress in parents of children with CDH seems to increase with the severity of the child's malformation. Mothers tend to score higher parental stress than fathers.