The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people’s experiences and to describe significant others’ and family care advisors’ views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept ‘frail older people’ was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.

BACKGROUND: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI. AIM: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI. METHODS: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted. RESULTS: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated. CONCLUSIONS: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind

Background. Occupational therapists support everyday technology use; however, it is necessary to consider the challenges that people with dementia encounter with everyday technologies when participating in various places within public space. Purpose. The purpose of the study was to explore stability and change in participation in places visited within public space in relation to the relevance of everyday technologies used within public space. Method. People with dementia (n = 35) and people with no known cognitive impairment (n = 34) were interviewed using the Participation in Activities and Places Outside Home Questionnaire and the Everyday Technology Use Questionnaire. Data analysis used modern and classical test theory. Findings. Both samples participated in places within public space; however, participation and relevance of everyday technologies were significantly lower for the dementia group.

Introduction Stroke is a globally common disease that has detrimental effects on the individual and, more broadly, on society. Lifestyle change can contribute to reducing risk factors for stroke. Although a healthy lifestyle has direct benefits, sustaining and incorporating healthy activities into everyday life is a challenge. Engaging everyday activities have the potential to support lifestyle change and to promote sustainable activity patterns. Current healthcare is failing to reduce modifiable risk factors in people at risk, and in addition to current practice, there is a need for systematic and efficient non-pharmacological and non-surgical stroke-prevention strategies. The aim of the pilot study was to increase knowledge about the effects of a prevention programme and its feasibility to promote sustainable and healthy activity patterns among persons at risk of stroke. Methods and analysis The proposed pilot study will be a two-armed randomised, assessor-blinded, parallel pilot trial. The study will include feasibility data, investigating acceptability and delivery of the intervention. Persons at risk of stroke (n=60) will be included in a mobile phone-supported prevention programme. The 10-week programme will be conducted at primary healthcare clinics, combining group meetings and online resources to support self-management of lifestyle change. Main outcomes are stroke risk, lifestyle habits and healthy activity patterns. Assessments will be performed at baseline and at follow-up (immediately following the end of the programme and at 6 and 12 months). Effects of the programme will be analysed using inferential statistics. Feasibility will be analysed using both qualitative and quantitative methods.

BACKGROUND: Patient-centeredness is emphasized in both health policies and practice, calling for reliable instruments for the evaluation of the quality of nursing care. PURPOSE: The purpose was to analyze the psychometric properties of the Good Nursing Care Scale (GNCS) in a sample of surgical patients and nurses. METHODS: An explorative cross-sectional study design was used. Data were collected with the 40-item GNCS from surgical patients (n = 476) and nurses (n = 167) in Finland. The data were analyzed with Rasch analysis. RESULTS: The GNCS provided evidence of unidimensionality with acceptable goodness-of-fit to the Rasch model in both samples. Person-separation validity was acceptable. Person misfit was reasonable. The Rasch-equivalent Cronbach alpha was 0.81 (patient data) and 0.88 (nurse data). CONCLUSIONS: The findings support that the GNCS is a psychometrically sound instrument that can be used in measuring the quality of nursing care, from the perspective of both patients and nurses.

BACKGROUND: Psychological treatments provide many benefits for patients with psychiatric disorders, but research also suggests that negative effects might occur from the interventions involved. The Negative Effects Questionnaire (NEQ) has previously been developed as a way of determining the occurrence and characteristics of such incidents, consisting of 32 items and six factors. However, the NEQ has yet to be examined using modern test theory, which could help to improve the understanding of how well the instrument works psychometrically. AIMS: The current study investigated the reliability and validity of the NEQ from both a person and item perspective, establishing goodness-of-fit, item bias, and scale precision. METHOD: The NEQ was distributed to 564 patients in five clinical trials at post-treatment. Data were analysed using Rasch analysis, i.e. a modern test theory application. RESULTS: (1) the NEQ exhibits fairness in testing across sociodemographics, (2) shows comparable validity for a final and condensed scale of 20 instead of 32 items, (3) uses a rating scale that advances monotonically in steps of 0 to 4, and (4) is suitable for monitoring negative effects on an item-level. CONCLUSIONS: The NEQ is proposed as a useful instrument for investigating negative effects in psychological treatments, and its newer shorter format could facilitate its use in clinical and research settings. However, further research is needed to explore the relationship between negative effects and treatment outcome, as well as to test it in more diverse patient populations.

Assessing competence in interprofessional collaborative practice (ICP) among health professions students is a high priority. This cross-sectional study built on the authors' prior work that led to the development of the 38-item Interprofessional Education Collaborative Competency Self Efficacy Tool (IPECC-SET), an instrument to evaluate health professions students' self-efficacy in interprofessional collaborative competency, and addressed two primary questions. First, could a unidimensional scale based on the IPEC competencies and assessing perceived self-efficacy for competence in ICP and be constructed? Second, could a shorter version of that instrument still meet criteria for unidimensionality and retain the ability to separate students in distinct levels of perceived self-efficacy for competence in ICP? Study participants were two cohorts of students from 11 health professions programs participating in an institutional interprofessional immersion event in 2015 and 2016. Statistical stepwise analyses were conducted using a Rasch rating scale model. The original 38 IPECC-SET items did not meet the criteria to generate a valid unidimensional measure of self-efficacy for competence in ICP, but could be condensed into a 27-item scale that met all set criteria for unidimensionality, with an explained variance of 61.2% and a separation index of 3.02. A shorter, 9-item scale demonstrated a separation index of 2.21. The nine items included also demonstrated a relatively equivalent range (54.93-45.65) as compared to the 27-item scale (57.26-46.16). Findings confirm empirically the conceptual suggestion from our earlier work that the four dimensions in the original IPEC competencies contribute to a shared underlying construct: perceived competence in interprofessional collaboration. Given the emphasis on ICP, psychometrically sound instruments are needed to evaluate the effectiveness of educational efforts to promote competency for ICP. Based on the findings from this study, both the IPECC-SET 27 and IPECC-SET 9 can be used to measure perceived self-efficacy for competence in ICP.

Introduction: Waterpipe use amongst adolescents is on the rise globally. Thus, there is a need to understand adolescents 'attitudes towards and perceptions of waterpipe use in order to develop specific interventions against this form of tobacco use. Methods: Focus group interviews were conducted among 37 Swedish adolescents (14 boys and 23 girls) from grades 10 to 12. Waterpipe users and nonusers were interviewed separately, with two groups each for users and nonusers. Interviews were audiotaped, transcribed, and thematically analyzed using content analysis. Results: Six themes emerged including taking a stand, weighing the risks, Lack of knowledge, Social context, Waterpipe new and unknown, and Family influence. Taking a stand was about being able to stand up for one's owns views rather than giving in to peer pressure to smoke waterpipe. Participants feared harming others via secondhand smoke and expressed criticism of the tobacco industry. Participants considered the health consequences and feared addiction. Lack of knowledge concerning health effects of waterpipe smoking due to the unavailability of credible information was also reported. Waterpipe smoking was considered a social event carried out in the company of friends. Perceived as novel and fun, waterpipe was smoked out of curiosity. Parents' and siblings' smoking behaviors influenced adolescent waterpipe use. Conclusion: Adolescents reported lacking information about the possible health effects of waterpipe smoking and that gaining such knowledge would make it easier for them to take a stand and refuse smoking waterpipe. Prevention strategies should focus on providing adolescents with factual information about the dangers of waterpipe use.

Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.

Objective: The de-institutionalizing process came to an end before the millennium shift by closing mental hospitals. After that some of the most ill patients are cared for in sheltered housing (SH). There is no in-house psychiatric competence and the staff on the floor usually lacks such knowledge and training. Observation instruments may improve this by making it possible to assess and monitor patients. Method: FAST-O is a simple twelve-item observation scale. Staff at eight SH units were trained in using the instrument and then assessed a total of 67 patients once, twice or three times at monthly intervals. Results: Ten items formed two highly homogenous subscales reflecting Social skills (Soc) and Excitation/Aggression (E/A). Depression and Clinical Global Impression (CGI) items were considered separately. The correlation pattern suggested that the ratings had construct validity. A cluster analysis identified three patient subgroups, of which one had very high E/A scores. Comparisons with reference data suggested that the average symptom level was on par with acutely admitted in-patients for this subgroup. In all groups, E/A symptoms varied considerably over time, the other symptoms were more stable. There were marked differences among the eight SH units with respect to the level of patient problems. Conclusions: The SH staff was able to produce valid FAST-O assessments. There are reference data which makes it possible to characterize individual patients as well as SH units with respect to treatment needs and safety aspects (for instance risk of violence).

Aims: To explore nursing students’ perception of peer learning during cross‐cultural learning activities through student‐led webinars. Design: An exploratory qualitative study. Methods: Thematic analysis of data collected from reflective journals and focusgroup interviews of participating nursing students across three international universities in Australia, Hong Kong, and Sweden during autumn 2017. Results: Three themes were identified: peer learning as creation of friendship; peer learning from interactions that went beyond what was originally intended; and peer learning as empowered learning. Conclusion: Combining peer learning as an educational approach with cross‐cultural and student‐led webinars provided new perspectives. On‐line learning across global boundaries, based on a sound educational model, creates new opportunities for internationalization without straining individual and institutional financial resources

Background: Depressive symptoms and/or depression are commonly experienced by older people. Both are underdiagnosed, undertreated and regularly overlooked by healthcare professionals. Healthcare facilities for people aged ≥ 75 years have been in place in Sweden since 2015. The aim of these care centres, which are managed by registered nurses (RNs), is to offer care adjusted to cater to the complex needs and health problems of older people. Although the mental health of older people is prioritised in these centres, research into the experience of RNs of depressive symptoms and/or depression in older people in this setting is limited. Therefore, this study aimed to illuminate RNs, working at care centres for older people, experience of identifying and intervening in cases of depressive symptoms. Methods: The data for this qualitative descriptive study were collected through interviews (n = 10) with RNs working at 10 care centres for older people in southern Sweden. The transcribed texts were analysed using inductive content analysis. Results: The participants’ experiences could be understood from four predominant themes: (1) challenging to identify, (2) described interventions, (3) prerequisites for identification, and (4) contextual influences. Key findings were that it was difficult to identify depression as it often manifested as physical symptoms; evidence-based nursing interventions were generally not the first-line treatment used; trust, continuity and the ability of RNs to think laterally; and the context influenced the ability of RNs to manage older people’s depressive symptoms and/or depression. Conclusions: The process of identifying depressive symptoms and performing an appropriate intervention was found to be complex, especially as older people were reluctant to present at the centres and provided obscure reasons for doing so. A nurse-patient relationship that was built on trust and was characterised by continuity of care was identified as a necessary prerequisite. Appropriate nursing interventions—afforded the same status as pharmacological treatment—are warranted as the first-line treatment of depression. Further research is also needed into efficacious nursing interventions targeting depressive symptoms and/or depression.

RATIONALE: Since health care is facing challenges, with fewer caregivers providing care to more clients, eHealth plays a crucial role. Through eHealth, people are expected to be more involved in their own care. On the part of health care users, eHealth requires use of everyday technology such as telephones and computers, and services through the Internet which might be challenging for older adults with cognitive impairment. AIM: To investigate experiences of using eHealth in contact with health care among older adults with cognitive impairment. METHOD: Individual, semi-structured interviews were conducted with nine participants, aged 65-84 years, with cognitive impairments of varying origins. A constructivist Grounded Theory approach was used. Data collection and analysis were performed simultaneously using a constant comparative method. ETHICAL ISSUES: Ethical approval (Dnr: 2014/906-32) was obtained from the regional ethical committee, Stockholm. RESULTS: The core category, the eHealth staircase supported by habits, is presented as a model that visualises the result. The model includes three steps showing different ways of being in contact with health care through the use of technological devices and services that mirrors different levels of complexity of eHealth use as follows: (i) Analogue use, (ii) One-way-use and (iii) Interactive use. The participants' location on the eHealth staircase was affected by several aspects described in three categories united by habits; A stable relationship with technology: a prerequisite for use; The importance of interpersonal relationships within health care and Being supported by significant others: a prerequisite in contact with health care. CONCLUSIONS: Older adults with cognitive impairments seemed to prefer common and less complex eHealth when contacting health care. Therefore, it is necessary that health care providers offer different possibilities for patients to contact them, that is, both through the Internet and by personal telephone service.

OBJECTIVE. We describe the development of a questionnaire, Participation in Activities and Places Outside Home (ACT-OUT). for older adults with cognitive impairment and align it to people with mild- to moderate-stage dementia. METHOD. ACT-OUT was developed in a cross-cultural collaboration in combination with three rounds of cognitive interviews in Switzerland with 26 older adults without cognitive impairment and five older adults with dementia. Qualitative data from the interviews were analyzed using a constant comparison approach. RESULTS. The final ACT-OUT Version 1.0 consists of three parts: (1) questions targeting places older adults visit: (2) questions on aspects influencing participation , such as transportation. familiarity, and risk perception: and (3) questions on perception of self. CONCLUSION. The development of an instrument such as ACT-OUT is more a cyclical than a linear process. This study is a first step toward a more systematic evaluation of out-of-home participation among older adults with and without dementia.

Objective: This study aimed to review, summarise, and assess the available evidence regarding the impact on the quality of life (QoL) of men undergoing screening for abdominal aortic aneurysm (AAA) and attending regular follow ups. Methods: PubMed, MEDLINE, CINAHL, and PsycINFO were used for searching. The search was performed from April to July 2016, with an update in February-March 2018. The quality of the studies was appraised with respective checklists from the Critical Appraisal Skills Programme. A narrative synthesis of the included studies was performed. The analysis included studies evaluating QoL in relation to one or more of the following concepts: physical function, psychological impact and social life in men undergoing AAA screening, but excluded studies evaluating QoL in AAA patients diagnosed outside a screening program. Results: The initial results from the search were 128 articles. Duplicates were removed, titles and abstracts were screened, and 22 full text articles were collected. Based on the inclusion criteria, 11 quantitative studies were included. Inferior quality of life among men with detected AAA was identified compared to those without the diagnosis and the general population in the included studies. The self-perceived health decreased over time for the participants with AAA. Assessments after surgery showed that the participants returned to similar health as before the screening. A wide variety of factors regarding the methodologies, designs, measurements, sample sizes, and the time for the assessment were noted in the included studies. Conclusion: Quality of life is an important outcome for AAA screening and studies have been conducted in an attempt to address the imbalance between benefits and harm. However, it is still difficult to draw clear conclusions, possibly due to the heterogeneity of the original studies. Nevertheless, it is important to identify men with an AAA who develop conditions influencing their health and QoL in order to understand their care needs to further support them and improve their situation.

Objective; The aim of this study was to investigate whether women, who reported “symptoms of depression” during pregnancy and up to 1.5 years postpartum, who reported domestic violence or not, were treated with antidepressant medication. Material and Methods; A prospective longitudinal cohort study recruited primi- and multiparous women (n=1939). The Edinburgh Postnatal Depression Scale (EPDS), the NorVold Abuse Questionnaire, and a questionnaire about medication during pregnancy were distributed and administered three times, during early, late pregnancy and during the postpartum period. Antidepressant medication was compared between women with EPDS scores < 13 and scores EPDS ≥ 13 as the optimal cut-off for lower and higher symptoms of depression. Results; EPDS scores > 13 were detected in 10.1 % of the women during the whole pregnancy, of those 6.2 % had depressive symptoms already in early pregnancy and 10.0 % during the postpartum period. Women with EPDS scores ≥ 13 and non-exposure to domestic violence were more often non-medicated (p < 0.001). None of the women with EPDS scores ≥ 13 exposed to domestic violence had received any antidepressant medication, albeit the relationship was statistically non-significant. Conclusion; Pregnant women who experienced themselves as having several depressive symptoms, social vulnerability and even a history of domestic violence, did not receive any antidepressant treatment during pregnancy nor postpartum. This study shows the importance of detecting depressive symptoms already during early pregnancy and a need for standardized screening methods.

Background Father's health is important for mothers and unborn/newborn children and knowledge about expectant fathers’ health in relation to lifestyle and psychosocial aspects is essential. Aims To determine sociodemographic and lifestyle factors, self‐reported health and sense of coherence among fathers and partners in relation to their risk for depression and anxiety in early pregnancy. Methods A cross‐sectional design, descriptive statistics, chi‐squared analysis, T‐test, binary logistic regression, multiple logistic regression with OR and 95% CI were used. Results A total of 532 prospective fathers/partners constituted the cohort (mean age 31.55, SD 5.47 years). Nearly, one in ten (9.8%) had a statistically high risk for depression; mainly those who were unemployed (p = 0.043), had financial distress (0.001), reported ‘very or fairly bad’ health (p = 0.002), had a ‘very or fairly bad’ sexual satisfaction (p = 0.006) and scored low on the SOC scale (p < 0.001). They smoked more often (p = 0.003) were hazardous users of alcohol (p = 0.001) and slept with difficulties (p = 0.001). Those with sleeping difficulties were 5.7 times more likely to have several symptoms of depression (p = 0.001). Hazardous users of alcohol and smokers had 3.1 respectively 3.0 times higher risk for depression (p = 0.001 respectively 0.003). The single strongest risk factor was a low score on the SOC‐scale which gave 10.6 (AOR 10.6; 95% CI 5.4–20.6) higher risk for depression. High‐anxiety ‘just now’ was reported by 8.9% and ‘in general’ by 7.9%, and those who had sleeping difficulties reported ‘very or fairly bad’ health (p < 0.001). Conclusions Allocating more resources and introducing more family‐focused care with depression and anxiety screening in early pregnancy for both expecting parents at antenatal care should be strongly considered by actors and policymakers, as this is a step in maintaining a family's well‐being.

Aim: To describe the detailed health-related quality of life (HRQoL) in survivors from the TTM-trial and to investigate potential differences related to sex and age. Methods: This is a cross-sectional study originating from a large prospective international, multicentre trial, including 442 respondents who answered the Short Form-36 item Questionnaire Health Survey version 2® (SF-36v2®) at a structured follow-up 6 months after out-of-hospital cardiac arrest (OHCA). Statistical analysis between independent groups were performed with Mann-Whitney U or Chi-square. Age was analysed primarily as a dichotomised variable. Results: Although overall physical and mental health were within the normal range, a substantial proportion of respondents had impaired function at domain-specific levels, particularly in Role-Physical (50%) and Role-Emotional (35%). Females scored significantly lower than males in; Physical Functioning (41.7 vs. 47.9, p < 0.001), Role-Physical (40.4 vs. 44.3, p = 0.02), General Health (47.0 vs. 50.5, p = 0.02), Vitality (47.2 vs. 52.7, p < 0.001), and Role-Emotional (41.5 vs. 46.2, p = 0.009). Those ≤65 years scored significantly better in Physical Functioning (47.9 vs. 44.1 p < 0.001), while those >65 years scored significantly better in Vitality (50.8 vs. 53.7, p = 0.006) and Mental Health (50.3 vs. 52.6, p = 0.04). Conclusions: Many OHCA survivors demonstrated impaired function in HRQoL at a domain level, despite most patients reporting an acceptable general HRQoL. Females reported worse HRQoL than males. Older age was associated with a worse Physical Functioning but better Vitality and Mental Health. Role-Physical and Role-Emotional aspects of health were especially affected, even when effects of age and sex where accounted for.

The use of validated instruments and questionnaires on abuse is of great importance to evaluate and compare the prevalence in different populations worldwide. However, most of the questionnaires available and published are in English. For example, the NorVold Abuse Questionnaire (NorAQ) instrument which was used for the Bidens study in six European countries. A substantial proportion of the pregnant population in the catchment area of the clinical site in Sweden is Arabic-speaking women. As abuse and violence against women is a global concern, it is important to translate these questionnaires to other languages. This process is not just merely a matter of finding a correlating word but also needs to be validated for content and consider the wording in a linguistic and cultural context. This article gives an account of the translation and content validity process and its challenges and pitfalls from Swedish and English into the Arabic language version.

Objectives: The aim of this study was to establish the top 10 research uncertainties in aortic dissection together with the patient organization Aortic Dissection Association Scandinavia using the James Lind Alliance concept. Methods: A pilot survey aiming to identify uncertainties sent to 12 patients was found to have high content validity (scale content validity index = 0.91). An online version of the survey was thereafter sent to 30 patients in Aortic Dissection Association Scandinavia and 45 caregivers in the field of aortic dissection. Research uncertainties of aortic dissection were gathered, collated and processed. Results: Together with research priorities retrieved from five different current guidelines, 94 uncertainties were expressed. A shortlist of 24 uncertainties remained after processing for the final workshop. After the priority-setting process, using facilitated group format technique, the ranked final top 10 research uncertainties included diagnostic tests for aortic dissection; patient information and care continuity; quality of life; endovascular and medical treatment; surgical complications; rehabilitation; psychological consequences; self-care; and how to improve prognosis. Conclusion: These ranked top 10 important research priorities may be used to justify specific research in aortic dissection and to inform healthcare research funding decisions.

Objectives: The Behavioural Pain Scale has previously been translated into Swedish and psychometrically tested. One of the domains- 'compliance with ventilation'- did not show equally as good psychometric proprieties as the other domains, which led to the question whether a development of that domain would be beneficial. This study aimed to develop the domain of 'breathing pattern' in the Swedish version of the Behavioural Pain Scale and then test the instrument for discriminant validity, inter-rater reliability and criterion validity. Method: The domain 'breathing pattern' was developed and included when the Swedish version of the Behavioural Pain Scale was psychometrically tested in 360 paired assessments. Results: The instrument showed discriminant validity through a significant positive change on the scale before and during turning and inter-rater reliability with an absence of significant disagreement on the scale between the paired assessments. The developed domain had a better result in discriminant validity than the original domain. The instrument also showed higher sensitivity in discriminating pain compared to assessment without an instrument. Conclusion: The Swedish version of the Behavioural Pain Scale, with a developed domain for 'breathing pattern' showed to be a reliable instrument for pain assessment in the adult intensive-care patient. (C) 2019 Elsevier Ltd. All rights reserved.

Background: Echocardiography is a frequently used imaging modality requiring extensive training to master. In order to develop curriculums and teaching material fully favouring students learning within echocardiography, this study aims to investigate students’ experiences of learning echocardiography, focusing on that which is perceived as the main challenges as well as what might aid learning within the area. The findings could serve as a foundation in the development of new teaching material or curriculums. Methods: A qualitative study was performed with data gathered through two audio-recorded focus group interviews with four third year students from the biomedical laboratory programme at Malmö University in each group. Data was analysed by manifest content analysis. Results: Findings were clustered into two categories reflecting the main findings in the text – practical skills and bridging the theory-practice-gap. Students expressed that main challenges when initially learning echocardiography were the projections and handling the probe as well as connecting ultrasound physics and measurements to practical application. Things that aided their learning were immediate feedback, “playing” with the ultrasound machine, video lectures, the possibility to swiftly alternate between practice and theory as well as the learning by their mistakes in a risk-free environment. Conclusions: This study shows the main challenges when initially learning echocardiography and what might be helpful during the learning process. These findings may be useful when developing curriculums or new teaching material within echocardiography. One suggestion might be to develop digital resources such as virtual laboratories (vLABs).

Background: It has been argued that the significance of personality in relation to students' readiness for interprofessional collaboration is an area where more research is needed. Nursing students in particular seem to be unsure about their role in the interprofessional team. Objective: To explore associations between nursing students' readiness for interprofessional learning and personality traits with regard to biological sex, and previous work experience from health care. Design: A cross-sectional questionnaire study. Setting: Nursing students in year one and three enrolled in a three-year undergraduate bachelor in nursing programme. Participants: Nursing students (n = 284) in semester two and six. Methods: The participants completed the Readiness for Interprofessional Learning Scale and the Neuroticism, Extraversion, and Openness to experience Five Factor Inventory-3. The data were statistically analyzed by descriptive statistics, t-tests, correlations and linear regressions. Results: Four of the five investigated personality traits – Extraversion, Openness to experiences, Agreeableness and Conscientiousness - were associated with nursing students' readiness for interprofessional learning. Moreover, nursing students in semester six were more ready for interprofessional learning regarding Negative professional identity and Roles and responsibilities than students in semester two. Female students were more ready for Teamwork and collaboration than male students. Conclusions: Nursing students being more outgoing, open-minded, agreeable or conscientious seem to be more ready for interprofessional learning. Consequently, personality is of significance for nursing students' readiness for interprofessional learning.

PURPOSE: The West Sweden Asthma Study (WSAS) is a population-representative longitudinal study established to: (1) generate data on prevalence trends, incidence and remission of asthma, allergy and respiratory conditions, (2) elucidate on the risk and prognostic factors associated with these diseases, (3) characterise clinically relevant phenotypes of these diseases and (4) catalyse relevant mechanistic, genomic, genetic and translational investigations. PARTICIPANTS: WSAS comprised of randomly selected individuals aged 16 to 75 years who are followed up longitudinally. The first stage involved a questionnaire survey (>42 000 participants) and was undertaken in 2008 and 2016. A random sample (about 8000) of participants in the initial survey undergoes extensive clinical investigations every 8 to 10 years (first investigations in 2009 to 2012, second wave currently ongoing). Measurements undertaken at the clinical investigations involve structured interviews, self-completed questionnaire on personality traits, physical measurements and extensive biological samples. FINDINGS TO DATE: Some of our key findings have shown a 54% increase in the use of asthma medications between the 1990s and 2000s, primarily driven by a five-fold increase in the use of inhaled corticosteroids. About 36% of asthmatics expressed at least one sign of severe asthma indicator, with differential lung performance, inflammation and allergic sensitisation among asthmatics with different signs of severe asthma. Multi-symptom asthmatics were at greater risk of having indicators of severe asthma. In all adults, being raised on a farm was associated with a decreased risk of allergic sensitisation, rhinitis and eczema, but not asthma. However, among adolescents (ie, those 16 to 20 years of age), being raised on a farm decreased the risk of asthma. Personality traits were associated with both beliefs of asthma medication and adherence to treatment. FUTURE PLANS: Follow-up of the cohort is being undertaken every 8 to 10 years. The repeated clinical examinations will take place in 2019 to 2022. The cohort data are currently being linked to routine Swedish healthcare registers for a continuous follow-up. Mechanistic, genomic, genetic and translational investigations are ongoing.

Introduction: People with diabetes type 1 (DT1) and 2 (DT2) develop complications on small and large vessels and nerve pathways over time. In men with Diabetes, erectile dysfunction is a well-documented complication. However, knowledge about sexual dysfunction in women with diabetes is less studied and available studies do not distinguish between DT1 and DT2. In addition sexual dysfunction are associated with lowered health-related quality of life and depressive symptoms. Objective: The aim of this study was to conduct a cross-sectional study among women with type 1 diabetes on sexual function and health-related issues. Method: A cross-sectional study with a self-reporting questionnaire including validated instruments and background questions. Study population is women residing in southern Sweden aged 45-70 with diabetes type 1 for at least 15 years. The women were identified from clinical electronic medical records at two hospitals. Sexual function by Female Sexual Function Index (FSFI) was included. Depression was investigated by Patient Health Questionnaire (PHQ-9). A descriptive statistical analysis of background factors, depression and self-reported occurrence of sexual dysfunction is presented. An 80% power calculation at p < 0.05 based on a study population of 356 women was applied and data collection is ongoing. The Regional Ethics and Research Board approved the study (No. 2018/855). Results: By April 2019, in total 84 women have returned a completed questionnaire. Mean age was 53.5 years (SD: 9.3), mean years with DT1 was 35.5 years (SD: 11.4) and BMI was 27.1 (SD: 4.8). Sexual dysfunction with the cut-off score less than 26.0 (a maximum score at 36) was reported by 39.3% of the women. The sub-score (value 2-6) of five domains showed the lowest value for Desire 3.0, followed by Arousal 3.6, Lubrication 3.8, Orgasm 3.9, Pain 4.0 and Satisfaction 4.1. In total 38.6% reported mild or moderate to severe symptoms of depression measured with PHQ-9. However, only 33.3% of those with depressive symptoms reported having anti-depressive medication. Conclusions: Women with a long-term DT1 diagnosis showed symptoms of both sexual dysfunction and depression. Therefore, these problems in women with DT1 can be unreported unless addressed on a regular basis. Self-reported instruments such as FSFI and PHQ-9 has shown good validity to screen for these conditions and could be used for assessment within gynecological and primary health care as well as at mental health clinics caring for women with DT1.

This proposal reports from a pilot study where primary teachers and school nurses were interviewed concerning their collaboration in sex education. These primary teachers and school nurses do not traditionally collaborate around sex education in Swedish schools. Albeit different projects where collaboration between them has been encouraged, earlier research demonstrates problems between the two groups of professionals to act jointly. The new Swedish school law from 2011 prompts such collaboration and asks for school health teams increased participation in sex education in compulsory school. In this pilot study, five primary teachers and five school nurses were interviewed about their collaboration. The purpose of the pilot study was to describe and analyse the teachers and school nurses’ experiences and perspectives of their collaboration concerning sex education among pupils aged 10-12 years. The interviews were analysed with thematic analysis. One overall theme emerged; The classroom is the teacher’s arena, and three sub themes; A collaboration needs two parts; Attitudes is a barrier and Organisation as a facilitator, were found. The results indicate a prevailing distance between the two groups. The nurses claim that the classroom is the teacher’s arena, an arena which is difficult for nurses to enter. The collaboration is usually initiated by teachers not nurses. The teachers assert that the school nurses are professional resources in school and experts on different health issues, such as menstruation. While the school nurses regard the head master as important for how sex education is facilitated and implemented in school, the teachers claim to manage sex education without the head master’s influence. The results indicate that the new school law where school health team is involved in the science education has not been implemented at the schools in the present study.

BACKGROUND: The trend towards telemedicine increasingly requires clients to manage everyday technology (ET) to access and use health services. The Management of Everday Technology Assessment (META) is an observation-based instrument developed to evaluate the ability to manage ET. AIM: To examine test-retest (TRR) and inter-rater reliability (IRR) of the Danish translation of the META for older adults with and without COPD. METHOD AND MATERIALS: 47 older adults with COPD (n = 23) and without (n = 24) were recruited. IRR was examined by four raters paired across 30 participants. TRR was examined for 21 participants by the same rater administering the META twice within four weeks. A rank-based method for paired ordinal data was used to calculate percentage agreement (PA) and measures of systematic disagreement and individual variability. Mann Whitney U tests were used to compare PA to health status (presence/absence of COPD). RESULTS: Inter-rater PA was acceptable across 10 of 11 items and test-retest PA across 8 of 11 items. Systematic disagreement was present for one item in TRR. No significant differences in PA were found regarding health status. CONCLUSION: The Danish META generates reliable scores for this sample. However, conclusive statements cannot be made for all items.

People with intellectual disabilities are dependent in many ways on the support ofothers if they are to have access to social life, services and support in society. Inorder to participate in various activities, they need intellectual and social support.This means that participation for them, depends in several ways on other people´swillingness to facilitate and promote participation. This imposes high demands onthose professionals providing formal support for them. Hence, the overall aim ofthis thesis was to explore and describe from four perspectives the experiences ofeveryday life and participation for people with intellectual disabilities. The thesiscontains four qualitatively oriented studies, which have evolved over time. StudiesI-II, including participant observations and interviews, and were conducted ingroup homes with staff and adults with intellectual disabilities. Furthermore, itemerged that adults with intellectual disabilities experienced different limitationsin their everyday life, which indicates a lack of opportunity for participation (StudyII). From the findings of these two studies, it became clear that participation is acentral focus and that leadership is of particular significance for how participationis implemented; therefore, interviews were conducted with service managers (Study III). Lastly, within the framework of this thesis, the aim was directed atfocus groups with significant others as the fourth perspective to provide a broadframing of what participation can mean for people with intellectual disabilities.Despite the fact that the disability policy has contributed to improvements forthis target group, there are currently extensive shortcomings. This study hasrevealed deficiencies such as the lack of working methods to help staff facilitateparticipation (Study I); the lack of care worker´ continuity and the existence ofmany routines and rules in the group homes (Study II); more overarchingly, thefinancial situation was not adequate to promote participation (Studies III and IV).Consequently, there were also strengths and opportunities for a good everyday life and for participation. All four perspectives are important as, together, theycontribute with a deeper understanding of what participation is and is not, inrelation to people with ID. From the findings presented in this thesis, it can be saidthat participation is double-edged as the four studies highlight both the absenceand presence of participation.

In this article we ask our profession to consider whether something is rotten at the core of modern nursing. We will use our own experiences as patients, together with published literature, to ask questions of our profession in perpetrating what one of our colleagues recently, and with great embarrassment, referred to as ‘shitty nursing’. Our intention is most certainly not to offend any readers, for this term has been used in literature for more than one hundred years to describe bad situations, including those where events or people’s behaviour are of a low standard. Our intention instead, is to challenge ourselves, the profession and you the reader by raising a measured debate which seems at present to be missing within the profession. We examine the potential idea that poor nursing care may not be the exception, but horrifyingly, may be the new normal. We are particularly concerned that patients’ fundamental care needs may be falling into an ever widening gap between assistant and registered nurses. Whilst we acknowledge the potential causes of poor nursing care, causes that are often cited by nurses themselves, we come to the conclusion that a mature profession including clinicians, educators, administrators, researchers and regulators cannot continually blame contextual factors for its failings. A mature profession with an intact contract between itself and society must shoulder some of the responsibility for its own problems. We do suggest a way forward, including a mix of reconciliation, refocus and research, underpinned by what we argue is a much needed dose of professional humility. Readers may take us to task for potentially overstating the problem, ignoring non-nursing drivers, and downplaying other significant factors. You may think that there is much in nursing to glory in. However, we make no apology for presenting our views. Our lived experiences tell us something different. As professional nurses our main aim is to ensure that our adverse experiences as patients are statistical anomalies, and our future encounters with nursing care represent all that we know to be excellent in our profession. We leave you to judge and comment.

Objective: The aim of this study was to investigate preceptors' and nursing students’ experiences of peer learning in a psychiatric context during their clinical education. Design: A qualitative research design was used in this study. Data were analysed with qualitative content analysis. The study was conducted in 2017 with 17 preceptors and 11 students, constituting four focus groups with preceptors and four focus groups with nursing students. Participants: The preceptors were nurses and specialist nurses who worked in inpatient psychiatric care. Nursing students seeking their bachelor's degrees were placed in clinical settings at different psychiatric units for 4 weeks during the fourth semester. Results: One theme emerged: Knowledge acquisition as an interactive process from the two shared categories for students and preceptors: reciprocal learning by communication, doing and reflection and the importance of a supportive relationship. Conclusions: The result of this study suggested that peer learning in clinical education in psychiatric care promoted the learning process for nursing students.

Background Colonoscopy plays a crucial role in the diagnosis of paediatric inflammatory bowel disease (IBD), adolescents comprise 25% of all cases of IBD. Several studies have found that a safe, informative, and effective colonoscopy, performed in a child-friendly atmosphere with minimal distress to the child, is difficult to achieve. The aim of this study was to describe nurse’s experiences of the pre-colonoscopy procedure prior in children. Methods A qualitative design with a thematic content analysis approach was used. Fifteen nurses at a children’s hospital participated in interviews regarding their experiences of the bowel cleansing procedure with PEG in children. Results Four key themes were extracted from the nurses’ experiences; lack of knowledge, challenges surrounding information, responsibility without control and assembly line- like procedure.. Conclusions This study shows that nurses feel that they need more time and education opportunities before involved in paediatric colonoscopies.

BACKGROUND: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. METHOD: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. RESULTS: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. CONCLUSIONS: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed.

Aims and objectives: To explore the variation of registered nurses’ conceptions of the professional work in contemporary somatic health care. Background: The turnover of registered nurses has consistently been high in recent years. This implies that competence is at risk of disappearing from patient care, which might lead to an increase in organisational costs and a decreased quality of care. Therefore, management at all levels within healthcare organisations is trying to find ways to make use of available nursing resources more efficiently. This could imply new views on nurses’ professional work in future. Design: Qualitative design with a phenomenographic approach. Methods: Semistructured interviews with registered nurses in somatic care. Result: Four descriptive categories emerged: registered nurse as an expert in nursing, registered nurse as a close collaborator to the patients, registered nurse as a coordinator and leader and registered nurse as an administrator. Conclusions: The registered nurses’ conception of their work is being experts in nursing and having a key role in leading the care forward. They perceive that they are important in coordinating the care to guarantee that the patient receives the right competence. Registered nurses perceive their work to be most important when working in close interaction with the patients, whereas the organisation is perceived as an obstacle to achieve this. Relevance to clinical practice: This result may be a contribution to understand what registered nurses conceive is their work. The result can also help identifying factors influencing registered nurses intent to stay. Thus, it is of importance for managers to involve the professionals in the development of clinical care, as well as allowing professionals to influence higher‐level organisational changes to ensure quality in care and patient safety.

Aim: The aim of this article was to illuminate the content of meta‐supervision of clinical supervisors active in a nursing programme delivering clinical supervision to nursing students in southern Sweden. The purpose of clinical supervision is to strengthen and develop the professional role through increased self‐awareness. Design: A qualitative, descriptive study was conducted analysing the documentation of 117 meta‐supervisory situations. Methods: Over 100 handwritten documented sessions, during 10 years of meta‐supervision, were analysed using content analysis. Results: The content of meta‐supervision consisted of three theoretical aspects: psychological aspects, pedagogical aspects and nursing aspects. To employ competent meta‐supervisors, the meta‐supervisor should have documented in‐depth knowledge of psychology, pedagogy and a good knowledge of the nursing context.

Safe drug calculation is important in nursing as insufficient skills pose a risk to patient safety. Therefor solid education in mathematics for undergraduate nursing students must be provided. To support nursing students' skills in drug calculation, a web-based learning platform for drug calculation was created. The aim of this study was to investigate nursing students' experiences of a web-based learning platform for drug calculation in terms of usability and learning support. The study was a cross-sectional comparative study. Ninety-five nursing students participated, out of which 46 students were in semester one and 49 students were in semester six. A questionnaire was used to evaluate the nursing students' experiences of a web-based learning platform for drug calculation in terms of usability and learning support. The findings were informed by statistical and thematic analyses. The majority of the participants evaluated the platform positively. The platform was deemed useful, and it was a support for the nursing students' learning. These findings provide that a web-based learning platform for drug calculation can be used as a complement to traditional lectures. Nevertheless, further research is required focusing teaching strategies facilitating different learning styles and level of computer skills.

AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.

AIM: To explore existential loneliness among older people in different healthcare contexts from the perspective of healthcare professionals. BACKGROUND: Professionals meet and care for older people in most care contexts and need to be prepared to address physical, psychological, social and existential needs. Addressing existential loneliness can be both challenging and meaningful for professionals and is often not prioritised in times of austerity. DESIGN: A multiple case study design was used. METHODS: Focus group interviews were conducted with healthcare professionals (n = 52) in home, residential, hospital and palliative care settings. The analysis was performed in two steps: firstly, a within-case analysis of each context was conducted, followed by a cross-case analysis. FINDINGS: Differences and similarities were observed among the care contexts, including for the origin of existential loneliness. In home care and residential care, the focus was on life, the present and the past, compared to hospital and palliative care, in which existential loneliness mainly related to the forthcoming death. The older person's home, as the place where home care or palliative care was received, helped preserve the older person's identity. In hospital and palliative care, as in institutional care, the place offered security, while in residential care, the place could make older people feel like strangers. Creating relationships was considered an important part of the professionals' role in all four care contexts, although this had different meanings, purposes and conditions. CONCLUSIONS: The context of care matters and influences how professionals view existential loneliness among older people and the opportunities they have to address existential loneliness. IMPLICATIONS FOR PRACTICE: Support for professionals must be tailored to their needs, their education levels and the context of care. Professionals need training and appropriate qualifications to address existential loneliness related to existential aspects of ageing and care.

Objective: To explore first-time mothers' satisfaction with their birth experience using Visual Analog Scale and to identify possible risk factors for a negative birth experience. Design: A cross-sectional design using retrospective data collection from electronic medical files. Setting: A birthing center in southern Sweden, which has approximately 1400 births annually. Participants: Primiparous women (N = 584) who gave birth during 2017. The cut-off point for a negative birth experience was set as <= 4 on the Visual Analog Scale. Measurements and findings: The mean age of the women was 29 years (SD 5.1; range 16-47 years). Prevalence of a negative birth experience was 9.6%. The strongest risk factors for a negative birth experience were having obstetric anal sphincter injuries (AOR 2.8 CI 95% 1.1-7.2) and oxytocin augmentation started in the first stage of labor (AOR 2.2 CI 95% 1.1-4.4). Key conclusions: Women who had their labours augmented with oxytocin or sustained an anal sphincter injury were statistically significantly more likely to have a negative birth experience. However, it is uncertain whether the women scored pain experience or birth experience when they reported their satisfaction on the Visual Analog Scale; further investigation is required. Implications for practice: It is important to use a reliable and validated instrument to measure birth experience in order to promote respectful and supportive care for new mothers. (C) 2019 Elsevier Ltd. All rights reserved.

Background: The nurse’s primary task in psychiatric care should be to plan for the patient’s care in cooperation with the patient and spend the time needed to build a relationship. Psychiatric care nurses however claim that they lack the necessary time to communicate with patients. To investigate the validity of such claims, this time-motion study aimed at identifying how nurses working at inpatient psychiatric wards distribute their time between a variety of tasks during a working day. Methods: During the period of December 2015 and February 2016, a total of 129 h and 23 min of structured observations of 12 nurses were carried out at six inpatient wards at one psychiatric clinic in southern Sweden. Time, frequency of tasks and number of interruptions were recorded and analysed using descriptive statistics. Results: Administering drugs or medications accounted for the largest part of the measured time (17.5%) followed by indirect care (16%). Relatively little time was spent on direct care, the third largest category in the study (15.3%), while an unexpectedly high proportion of time (11.3%) was spent on ward related tasks. Nurses were also interrupted in 75% of all medication administering tasks. Conclusions: Nurses working in inpatient psychiatric care spend little time in direct contact with the patients and medication administration is interrupted very often. As a result, it is difficult to establish therapeutic relationships with patients. This is an area of concern for both patient safety and nurses’ job satisfaction.

BACKGROUND: International research concerning end-of-life issues emphasizes the importance of health care professionals (HCPs) being prepared to deal with existential aspects, like loneliness, in order to provide adequate care. The last phase of life is often related to losses of different kinds, which might trigger feelings of isolation in general and existential loneliness (EL) in particular. There is a large body of research concerning loneliness among older people in general, but little is known about the phenomenon and concept of EL in old age. OBJECTIVE: This study aims to describe the framing, design, and first results of the exploratory phase of an intervention study focusing on EL among older people: the LONE study. This stage of the study corresponds to the development phase, according to the Medical Research Council framework for designing complex interventions. METHODS: The LONE study contains both theoretical and empirical studies concerning: (1) identifying the evidence base; (2) identifying and developing theory through individual and focus group interviews with frail older people, significant others, and HCPs; and (3) modeling process and outcomes for the intervention. This project involves sensitive issues that must be carefully reviewed. The topic in itself concerns a sensitive matter and the study group is vulnerable, therefore, an ethical consciousness will be applied throughout the project. RESULTS: The results so far show that EL means being disconnected from life and implies a feeling of being fundamentally separated from others and the world, whether or not one has family, friends, or other close acquaintances. Although significant others highlighted things such as lack of activities, not participating in a social environment, and giving up on life as aspects of EL, the older people themselves highlighted a sense of meaningless waiting, a longing for a deeper connectedness, and restricted freedom as their origins of EL. The views of HCPs on the origin of EL, the place of care, and their own role differed between contexts. CONCLUSIONS: The studies focusing on identifying the evidence base and developing theory are published. These results will now be used to identify potential intervention components, barriers, and enablers for the implementation of an intervention aimed at supporting HCPs in encountering EL among older people. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/13607.

PURPOSE: To describe perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support to manage daily life and using a wheelchair for ambulation, from the affected young adults' and their parents' perspectives. METHOD: A qualitative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy and 19 parents. Phenomenography was used for data analysis. RESULTS: The diagnosis was described as being a shock and difficult to comprehend but also as a relief and a tool for information. Beginning to use a wheelchair was perceived to be mentally difficult but it also provided freedom. New ways of living involved physical, emotional, practical, and social difficulties as well as experiences of learning to adapt to the disease. The transition was overshadowed by concern about disease progression and influenced by facilitating factors, which were young adult being seen as a person; supportive family and friends; mobilized internal resources; meaningful daily activities; adapted environment; and professional support. CONCLUSIONS: The different perceptions expressed in this study highlight the importance of identifying personal perceptions and needs in order to optimize support provided by healthcare professionals. Implications for Rehabilitation The different perceptions described in this study emphasize the need for person-centered care for young adults living with recessive limb-girdle muscular dystrophy and their parents. Regular controls and professional support to cope with the disease and its consequences should be offered, not only at the time of diagnosis but also throughout disease progression. Beginning to use a wheelchair can be a psychologically distressing process, which has to be acknowledged by healthcare professionals when introducing it. Healthcare professionals should not only recognize the importance of having social relations and activities that are meaningful but also be a link to authorities in society and to interest organizations that can help to facilitate the person's management of the disease.

For decades, patient safety has been recognized as a critical global healthcare issue. However, there is a gap of knowledge of all types of adverse events sensitive to nursing care within hospitals in general and within orthopaedic care specifically. Objectives The aim of this study is to explore the incidence and nature of nursing-sensitive adverse events following elective or acute hip arthroplasty at a national level. Design A retrospective multicenter cohort study. Outcome variables Nursing-sensitive adverse events, preventability, severity and length of stay. Methods All patients, 18 years or older, who had undergone an elective (degenerative joint disease) or acute (fractures) hemi or total hip arthroplasty surgery at 24 hospitals were eligible for inclusion. Retrospective reviews of weighted samples of 1998 randomly selected patient records were carried out using the Swedish version of the Global Trigger Tool. The patients were followed for readmissions up to 90 days postoperatively throughout the whole country regardless of index hospital. Results A total of 1150 nursing-sensitive adverse events were identified in 728 (36.4%) of patient records, and 943 (82.0%) of the adverse events were judged preventable in the study cohort. The adjusted cumulative incidence regarding nursing-sensitive adverse events for the study population was 18.8%. The most common nursing-sensitive adverse event types were different kinds of healthcare-associated infections (40.9%) and pressure ulcers (16.5%). Significantly higher proportions of nursing-sensitive adverse events were found among female patients compared to male, p < 0.001, and patients with acute admissions compared to elective patients, p < 0.001. Almost half (48.5%) of the adverse events were temporary and of a less severe nature. On the other hand, 592 adverse events were estimated to have contributed to 3351 extra hospital days. Conclusions This study shows the magnitude of nursing-sensitive adverse events. We found that nursing-sensitive adverse events were common, in most cases deemed preventable and were associated with different kinds of adverse events and levels of severity in orthopaedic care. Registered nurses play a vital role within the interdisciplinary team as they are the largest group of healthcare professionals, work 24/7 and spend much time at the bedside with patients. Therefore, nursing leadership at all hospital levels must assume responsibility for patient safety and authorize bedside registered nurses to deliver high-quality and sustainable care to patients.