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Background: At the beginning of the 21st century, international adoptions of children with cleft lip and/or palate increased dramatically in Sweden. Many children arrived partially or totally unoperated, despite being at an age when palatoplasty has usually been performed. To date, the speech development of internationally adopted (IA) children has been described up to age 7–8 years, but later development remains unstudied. Aims: To investigate speech development between ages 5 and 10 years in children born with cleft lip and palate (CLP) adopted from China and to compare them with non‐adopted (NA) children with CLP. A secondary aim was to compare the frequencies of secondary palatal surgery and number of visits to a speech and language pathologist (SLP) between the groups. Methods & Procedures: In a longitudinal study, 23 IA children from China were included and matched with 23 NA children born in Sweden. Experienced SLPs blindly reassessed audio recordings from routine follow‐ups at ages 5 and 10 years. Velopharyngeal function (VPF) was assessed with the composite score for velopharyngeal competence (VPC‐Sum) for single words and rated on a three‐point scale (VPC‐Rate) in sentence repetition. Target sounds in words and sentences were phonetically transcribed. Per cent correct consonants (PCC) were calculated at word and sentence levels. For in‐depth analyses, articulation errors were divided into cleft speech characteristics (CSCs), developmental speech characteristics (DSCs) and s‐errors. Information on secondary palatal surgery and number of visits to an SLP was collected. Outcomes & Results: VPF differed significantly between the groups at both ages when assessed with VPC‐Sum, but not with VPC‐Rate. Regardless of the method for assessing VPF, a similar proportion in both groups had incompetent VPF but fewer IA than NA children had competent VPF at both ages. IA children had lower PCC at both ages at both word and sentence levels. More IA children had CSCs, DSCs and s‐errors at age 5 years, and CSCs and s‐errors at age 10. The development of PCC was significant in both groups between ages 5 and 10 years. The proportion of children receiving secondary palatal surgery did not differ significantly between the groups, nor did number of SLP visits. Conclusions & Implications: CSCs were more persistent in IA children than in NA children at age 10 years. Interventions should target both cleft and DSCs, be comprehensive and continue past the pre‐school years. WHAT THIS PAPER ADDS: What is already known on this subject: At the beginning of the 21st century, IA children with cleft lip and/or palate arrived in Sweden partially or totally unoperated, despite being at an age when palatoplasty has usually been performed. Studies up to age 7–8 years show that adopted children, compared with NA peers, have poorer articulation skills, demonstrate both cleft‐related and developmental articulation errors, and are more likely to have velopharyngeal incompetence. Several studies also report that adopted children more often require secondary palatal surgery due to fistulas, dehiscence or velopharyngeal incompetence compared with NA peers. What this paper adds to existing knowledge: This longitudinal study provides additional knowledge based on longer follow‐ups than previous studies. It shows that the proportion of children assessed to have incompetent VPF was similar among IA and NA children. It was no significant difference between the groups regarding the proportion that received secondary palatal surgery. However, fewer IA children were assessed to have a competent VPF. Developmental articulation errors have ceased in most IA and all NA children at age 10 years, but significantly more adopted children than NA children still have cleft‐related articulation errors. What are the potential or actual clinical implications of this work?: Speech and language therapy should target both cleft‐related and developmental articulation errors. When needed, treatment must be initiated early, comprehensive, and continued past the pre‐school years, not least for adopted children. [ABSTRACT FROM AUTHOR]

Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. [ABSTRACT FROM AUTHOR]

Background: The risks of developmental language disorder (DLD) for both educational progress and socio‐emotional development are well documented, but little is known about how children and young people with DLD experience and describe their language and communication. The need to complement experimental and quantitative studies with qualitative perspectives of the lived experience of individuals with DLD for speech and language therapists (SLT) practice has recently been foregrounded. Aims: To understand further the experiences of young people with DLD focusing on language and communication in a school context, and thereby contribute to the improvement of the communicative situation in school for this group. The study is guided by the following research question: How do young people diagnosed with DLD describe their experiences of language and communication in school? Methods & Procedures: The study is based on data generated from qualitative semi‐structured interviews with 23 participants diagnosed with DLD (age 13–19 years old) living in Sweden. All participants attended mainstream schools. To enable data to be collected during COVID‐19 restrictions, all interviews were conducted using Zoom. Reflexive thematic analysis was used to analyse the data. Outcomes & Results: Four main themes related to experiences of language and communication in school were constructed from the interviews: (1) feelings of inadequacy and comparisons with others; (2) feelings of being misjudged and misunderstood; (3) the importance of feeling safe and comfortable; and (4) the significance of the social and communicative context. The results bear witness of difficult and challenging aspects related to language and communication in school, including educational, social and emotional dimensions. An important outcome of this study is how young people diagnosed with DLD describe their language and communication functioning to be dependent on both individual characteristics and abilities, as well as situational, contextual and social factors. Conclusions & Implications: The results from this study show that young people with DLD can have persisting problems related to language and communication in school, including educational, social and emotional dimensions. SLT services may therefore be needed throughout the school years to ensure that students with DLD receive adequate support. In addition, support that goes beyond language abilities and targets social, contextual and emotional aspects should be considered. WHAT THIS PAPER ADDS: What is already known on this subject: Children and young people have unique knowledge about their language and communication which is instrumental for designing interventions and support strategies. Qualitative analyses of interview data have been able to identify both risk factors and protective strategies in relation to the well‐being of individuals with DLD. Despite this, children and young people with DLD are rarely heard in research or clinical discussions. What this paper adds to existing knowledge: In this study we listen to the voices of young people with DLD as they describe their experiences of language and communication in school. The participants describe a condition that makes them struggle to keep up with peers and puts them at risk of being misjudged by teachers, but also give examples of situations where negative consequences are hardly felt. What are the potential or actual clinical implications of this work?: DLD is a complex and dynamic disorder where contextual and social factors interact with individual abilities in creating the end result. The results of the study indicate that DLD can cause persisting problems related to language and communication in school, with impact on educational, social and emotional dimensions. To counteract these effects, SLT services may be needed throughout the school years, and support that goes beyond language abilities must be considered. [ABSTRACT FROM AUTHOR]

Various models of specialized foster care have been developed, but research on them is limited. This longitudinal, exploratory study analysed data on adaptive functioning, emotional and social problems and self‐concept in a specialized foster care service in Sweden. The focus of the study was on the development of the children and young people in placement. The Adaptive Behaviour Assessment System (ABAS‐II) was used to measure adaptive functioning, and the Beck Youth Inventories of Emotional and Social Impairment (BYI) was used to measure self‐rated emotional and social problems and self‐concept. Self‐ratings showed significant improvements in disruptive behaviour, anger, anxiety and depression. Adaptive functioning as rated by foster parents improved but not enough to catch up with the non‐clinical norm group. The average adaptive functioning among the participants at baseline was considerably below the Swedish norm group. Similar to the results of a previous study of the same treatment model, children and young people rated improvement while their foster parents did not do so to the same extent. Possible explanations for this are discussed in the paper. The study is limited by the lack of a control group and by data attrition. [ABSTRACT FROM AUTHOR]

Background: In dementia with Lewy bodies (DLB), limitations in linguistic and cognitive abilities may lead to difficulties in participating in conversations. The conversational outcome is also dependent on how the conversation partner adjusts to potential communicative challenges. Aims: This study explored resources and barriers in communication in DLB. Methods & Procedures: Linguistic and cognitive function was explored through standard clinical testing. The dyad's perception of function in daily life was explored through semi‐structured interviews analysed with content analysis. Interactional patterns and participation in casual conversation was analysed with conversation analysis. Outcome & Results: The results show how the husband diagnosed with DLB performed with high scores across most cognitive and linguistic test tasks. The interview data, however, revealed how both he and his wife experienced significant challenges regarding, for example, conversational tempo, as well as negative feelings relating to adjusting to these conversational changes. The interactional data from the casual conversation revealed, among other patterns, how the wife engaged in most of the storytelling in the conversation. The husband contributed details when his wife asked for help, or he acknowledged a faulty or missing detail in his wife's storyline. Thus, they both oriented to the husband's competence in monitoring and keeping track of the conversational content, despite challenges in taking the floor. Conclusions & Implications: A holistic picture of communication in DLB necessitates the use of different evaluation approaches. Both monological (e.g., test tasks revealing cognitive and linguistic resources) and dialogical information sources (e.g., observations of conversations revealing adjustments in conversations), as well as the perceptions of those engaging in everyday conversations (i.e., people with DLB and their conversation partner(s)), need to be evaluated when assessing resources and barriers in communication. What this paper adds: What is already known on the subject: It is well‐known that dementia with Lewy bodies (DLB) affects language and cognition. In conversations, persons with DLB experience difficulties in turn‐taking, topic initiation, entering conversations and keeping up with the conversational tempo. What this study adds: This study sheds light on conversations in one dyad where the husband has been diagnosed with DLB. The results from three different information sources (testing of language and cognition, interviews and a video‐recorded conversation) reveal patterns of resources and barriers that at first appear to contradict each other. However, the contradictions can be resolved when these discrepancies are examined in light of the differences in task structure, in terms of, for example, predetermined topics and how turn‐taking is managed. What are the potential or actual clinical implications of this work?: In order to gather a holistic picture of a person's conversational abilities, clinicians need to include information from both monological tasks (e.g., linguistic testing) as well as dialogical tasks (e.g., video recordings from conversation). The results also need to be evaluated in light of all conversation partners' perspectives on function in daily life. Furthermore, it is important to consider the nature of assessment tasks (particularly their interactional structure) when interpreting assessment results. [ABSTRACT FROM AUTHOR]

Background: The impact of hearing impairment is typically studied in terms of its effects on speech perception, yet this fails to account for the interactive nature of communication. Recently, there has been a move towards studying the effects of age‐related hearing impairment on interaction, often using referential communication tasks; however, little is known about how interaction in these tasks compares to everyday communication. Aims: To investigate utterances and requests for clarification used in one‐to‐one conversations between older adults with hearing impairment and younger adults without hearing impairment, and between two younger adults without hearing impairment. Methods & Procedures: A total of 42 participants were recruited to the study and split into 21 pairs, 10 with two younger adults without hearing impairment and 11 with one younger adult without hearing impairment and one older participant with age‐related hearing impairment (hard of hearing). Results from three tasks—spontaneous conversation and two trials of a referential communication task—were compared. A total of 5 min of interaction in each of the three tasks was transcribed, and the frequency of requests for clarification, mean length of utterance and total utterances were calculated for individual participants and pairs. Outcomes & Results: When engaging in spontaneous conversation, participants made fewer requests for clarification than in the referential communication, regardless of hearing status/age (p ≤ 0.012). Participants who were hard of hearing made significantly more requests for clarification than their partners without hearing impairment in only the second trial of the referential communication task (U = 25, p = 0.019). Mean length of utterance was longer in spontaneous conversation than in the referential communication task in the pairs without hearing impairment (p ≤ 0.021), but not in the pairs including a person who was hard of hearing. However, participants who were hard of hearing used significantly longer utterances than their partners without hearing impairment in the spontaneous conversation (U = 8, p < 0.001) but not in the referential communication tasks. Conclusions & Implications: The findings suggest that patterns of interaction observed in referential communication tasks differ to those observed in spontaneous conversation. The results also suggest that fatigue may be an important consideration when planning studies of interaction that use multiple conditions of a communication task, particularly when participants are older or hard of hearing. WHAT THIS PAPER ADDS: What is already known on this subject: Age‐related hearing impairment is known to affect communication; however, the majority of studies have focused on its impact on speech perception in controlled conditions. This indicates little about the impact on everyday, interactive, communication. What this study adds to the existing knowledge: We investigated utterance length and requests for clarification in one‐to‐one conversations between pairs consisting of one older adult who is hard of hearing and one younger adult without hearing impairment, or two younger adults without hearing impairment. Results from three tasks (two trials of a referential communication task and spontaneous conversation) were compared. The findings demonstrated a significant effect of task type on requests for clarification in both groups. Furthermore, in spontaneous conversation, older adults who were hard of hearing used significantly longer utterances than their partners without hearing impairment. This pattern was not observed in the referential communication task. What are the potential or actual clinical implications of this work?: These findings have important implications for generalizing results from controlled communication tasks to more everyday conversation. Specifically, they suggest that the previously observed strategy of monopolizing conversation, possibly as an attempt to control it, may be more frequently used by older adults who are hard of hearing in natural conversation than in a more contrived communication task. [ABSTRACT FROM AUTHOR]

Background and rationale: Ageism in nursing, particularly regarding oldest‐old adults (age ≥80 years), adversely affects patient safety and care quality. Nurse education can reduce ageist attitudes. Swedish and Austrian nursing students' attitudes towards adults age ≥80 years have not been assessed. Aims: To analyse attitudes towards adults age ≥80 years among nursing students from universities in Sweden and Austria. Design: A prospective cross‐sectional survey including the four‐factor, 26‐item validated Ageing Semantic Differential scale and demographic questions. Methods: A pen‐and‐paper survey was administered to nursing students at the Medical University of Graz, Austria (May–June 2019); an online survey was conducted at the University of Gothenburg, Sweden (January–June 2020). Demographic data were analysed descriptively; means and individual item ratings were calculated for each country. Multiple logistic regression was performed for each factor of the instrument: (1) Instrumentality, (2) Autonomy, (3) Acceptability and (4) Integrity. Six independent variables were included in the regression analysis. Results: In total, 136 Austrian and 222 Swedish students responded (88% women). Compared with Austrian students, Swedish students were older and had more positive attitudes about oldest‐old adults. Swedish students' median factor ratings (7‐point scale) were 3.62 (Factor 1), 3.50 (Factor 2), 2.71 (Factor 3) and 3.80 (Factor 4). Austrian students' median ratings were 4.25 (Factor 1), 3.83 (Factor 2), 3.28 (Factor 3) and 4.00 (Factor 4). Regression analyses showed that the variables country, older family member/acquaintance, and age were associated with the different factors. Discussion: Compared with Austrian students, Swedish students' attitudes towards oldest‐old adults were more favourable. We discussed the findings at individual, interpersonal/intergroup and societal/cultural levels and present implications for education and research. Conclusions: Nurse education should address ageism as a multilevel phenomenon, and include the person‐centred care perspective. Further research comparing nursing students' attitudes from different cultures is needed. [ABSTRACT FROM AUTHOR]

Background: Intelligibility can be defined as the speakers' ability to convey a message to the listener and it is considered the key functional measure of speech. The Intelligibility in Context Scale (ICS) is a parent rating scale used to assess intelligibility in children. Aims: To describe normative and validation data on the ICS in Swedish and to investigate how these are related to age, gender and multilingualism. Methods & Procedures: Two studies were included. Study 1 included ICS forms from 319 Swedish‐speaking children (3:2–9:2 years:months). Study 2 included video recordings and ICS forms from 14 children with speech sound disorder (SSD) and two with typical speech. The video recordings were transcribed in the validation process, resulting in intelligibility reference scores to which ICS scores were correlated. Outcomes & Results: Study 1: The mean value of the ICS for the 319 children was 4.73. There were no differences in ICS score related to age or gender. The children in the multilingual group were significantly older than the monolingual group and had significantly lower ICS scores than the group of monolinguals. Study 2: There was a moderate correlation between the ICS score and the transcription‐based intelligibility score, with the two children with typical speech excluded; however, this correlation was not significant. Conclusions & Implications: We contribute mean scores and percentiles on the ICS for Swedish‐speaking children. The finding that the ICS does not provide valid measures of intelligibility for the included children with SSD suggests that the instrument measures a different construct. What this paper adds: What is already known on the subject: The ICS has been translated to numerous languages and validated against articulation measures in several previous studies. The validity of the Swedish version has been investigated against intelligibility based on transcription of single words. What this paper adds to existing knowledge: The study provides normative values of the Swedish version of the ICS for children aged 3–9 years. This is the first study to use a gold standard measure of intelligibility in continuous speech to validate the ICS. The results show a somewhat dubious validity regarding ICS for the group of children with SSD included in the study. What are the potential or actual clinical implications of this work?: The ICS's suitability as a measure of intelligibility is questionable; however, it might be of use for speech and language pathologists to give an overview of the parents' view of their child's ability to communicate, in order to make a decision on possible further assessment and intervention. The normative values of the Swedish version of the ICS could be of use in this decision process. [ABSTRACT FROM AUTHOR]

Medical libraries in Sweden are digitised to a large extent, technically advanced and developing rapidly. This paper investigates technological trends among Swedish medical libraries in the near and distant future and their application within different areas of library activities. The authors also present a roadmap to increase technological developments within medical libraries in Sweden. Current technological trends include digital collaboration tools, mobile technologies and visualisation. Artificial intelligence, big data and smart technologies are upcoming trends. Technologies are applied within all areas of library activities, but preconditions for academic and hospital libraries differ. To remain a relevant provider of information services, libraries must be able to monitor, test and adopt new technologies. [ABSTRACT FROM AUTHOR]

Background: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults. Aim: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not. Method: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed‐method design to analyse the survey data, including free‐text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale. Results: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities. Conclusion: This paper is unique in exploring the informal peer‐caregiver's perceptions of isolation. Data were collected during the COVID‐19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis. [ABSTRACT FROM AUTHOR]

Aim: This paper presents an implementation study following previous research including a randomised controlled trial (RCT) of hospital-based home care (HBHC), referring to specialist care in a home-based setting. The aim was to evaluate whether the effects sustained when rolled out into wider practice.Methods: In 2013-2014, 42 children newly diagnosed type 1 diabetes were included in the study at a university hospital in Sweden and followed for two years. Measurements of child safety, effects of services, resource use and service quality were included. Descriptive statistics were used to present the results and then discussed in relation to the same intervention of HBHC previously evaluated in an RCT.Results: Shorter in-hospital stay was partially implemented but increased support after discharge by the diabetes nurse was not. The results indicated that the implemented HBHC was equally effective in terms of child outcomes two years from diagnosis but less effective in terms of parents' outcome. The results furthermore indicated that the quality of services decreased.Conclusion: The suggested overall conclusion was that the implemented HBHC services were safe but had become less effective, at least in relation to the HBHC provided under controlled circumstances. [ABSTRACT FROM AUTHOR]

Introduction: Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self‐care practices including self‐tracking signs and symptoms or seeking disease‐specific knowledge. Research suggests self‐care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self‐care. This study explores the meaning of self‐care, disease‐specific knowledge, and self‐tracking from the perspective of PwP in Sweden. Methods: Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self‐care (n = 14), one free‐text survey on disease‐specific knowledge (n = 197) and one free‐text survey on self‐tracking (n = 33). Findings: The analysis resulted in three categories: illness‐related tasks, internal resources and external resources. Illness‐related tasks describe various tasks PwP carry out in self‐care, including lifestyle choices, treatments, and self‐tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease‐specific knowledge. Self‐care was found to fluctuate between beneficial and burdensome depending on such resources. Conclusions: In conclusion, self‐care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self‐care interventions should consider self‐tracking and disease‐specific knowledge as well as internal and external resources in their design and implementation. Patient or Public Contribution: A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work‐up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work‐up at a specialized memory clinic. Methods: This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work‐up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50–72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test‐result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio‐recorded data were analyzed using thematic content analysis (using MaxQDA software). Results: Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work‐up impacted individuals psychosocially and (3) the diagnostic work‐up provided an opportunity to motivate individuals to adopt a healthier lifestyle. Conclusion: Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work‐up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health. Patient or Public Contribution: We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source. [ABSTRACT FROM AUTHOR]

Aim: To describe intensive care nurses' conceptions of participating during the donation after circulatory death (DCD) process in intensive care units in Sweden. Design: A qualitative design with a phenomenographic approach. Methods: In total, 12 semi‐structured interviews were conducted in April 2022 with intensive care nurses from three hospitals. Data were analysed using a phenomenographic approach. Results: Conceptions of participating during the DCD process varied. Four main themes emerged: DCD as a system; Intensive care nurses' role in the situation; Life to death to life; The essence of DCD. Variations emerged regarding what the informants talked about and how they talked about the what. Variations were based on informants' perspective of their role in relation to the structure and the team, and their conceptions of care for patients and their relatives. Conclusion: The findings illustrated success factors and challenges. Knowledge, experience, distinct structure, and relationship with relatives, among other factors, were described as success factors, while a lack of experience, difficulty in prognosing death, and organisational obstacles emerged as challenges. Furthermore, the findings showed that intensive care nurses play an important role in optimising the outcome of the DCD process. Their work related to DCD was conceived as being meaningful to fulfil more peoples' wishes to donate organs. Impact: People on the waiting list for organ transplantation are dying due to a shortage of organs. The implementation of DCD, as a complement to Donation after Brain Death (DBD), contributed to an increase in the number of organ donors, and intensive care nurses play an important role during the DCD process. Previous research manifests the complexity concerning their role. There is a lack of nursing research regarding intensive care nurses' conceptions of what it means to participate in the DCD process, which emphasises the significance of this study. Reporting Method: This study is reported using consolidated criteria for reporting qualitative research (SRQR). Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Abstract: This paper investigates young care leavers' expectations of their future after discharge from care. The results are based on qualitative longitudinal data where 16‐ to 21‐year‐old care leavers (n = 15) were interviewed twice, first when still in care but planning for their discharge (T1) and the second time 6–9 months later (T2). The analysis using a general inductive approach showed that their expectations were dependent on the time horizon and that there was an obvious difference between the young informants' short‐ and long‐term expectations. Their short‐term expectations consisted of worries connected to their approaching discharge (at T1) and how to cope with challenges of everyday life after discharge from care (at T2). These results seem to echo negative outcomes shown in previous quantitative research. However, the informants' long‐term expectations provide a different picture, being mainly positive in both interviews (T1 and T2). The results are discussed from a life course perspective, where the informants' visions of their future are framed and understood in terms of the different stages of their transition process. [ABSTRACT FROM AUTHOR]

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' ( AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. [ABSTRACT FROM AUTHOR]

The main aim of the Swedish physical activity and fitness cohort study ( SPAF-1958) was to describe physical fitness, physical activity, health, and lifestyle across part of the lifespan, and to assess the influences on these factors from the environment, personal factors, and genetics. There is inevitable dropout from longitudinal studies, and it may be systematic. The aim of this first paper of the second follow-up of SPAF-1958 was to provide a dropout analysis to consider to what extent the participants, at 52 years of age, remain a representative sample of the original adolescent study population. Additional aims were to provide an overview of the study protocol and the ongoing study population. Ongoing study participants in SPAF born in 1958 were, at the second follow-up at the age of 52, still representative of the study cohort in terms of sex, adolescent geographical area, upper secondary school program, adolescent body composition, muscular strength, and muscular endurance. However, a higher physical activity and, among women, a higher aerobic capacity in adolescence decreased the risk for dropout. It is important when interpreting results from longitudinal studies to adjust for the systematic dropout that could bias the conclusions drawn from the results. [ABSTRACT FROM AUTHOR]

Through adoption, the state actively contributes to creating families. It therefore also assumes the role of guarantor of the child's best interests in the adoption process, which entails assessing the suitability of presumptive adoptive parents. In the present paper, we use the concluding sections of assessment reports on applicants for intercountry adoption in Sweden to answer the following question: what must be said about an individual or a couple in order for her/them to be seen as a suitable adoptive parent? We thus assume that report conclusions serve to display parent suitability to their audiences. The assessment aligns with Swedish national adoption guidelines, and the study shows how the assessment handbook comes to serve as a catalogue of arguments that not only define good parenthood but also outline a way of life that is suitable for parenthood. The analysis illustrates how valid arguments for granting consent to adopt refer to three layers of suitability. They include not only the applicants' insights into and knowledge about adoption in particular and children in general but also their conventional and orderly life, i.e. a life free from distractions that could hinder a wholehearted focus on children and family life. [ABSTRACT FROM AUTHOR]

At a policy level, governments increasingly stress the importance of children's rights and their ability to participate in decision‐making in child welfare services. An example of this is that the Swedish inspectorate targeting children in residential care is required to consult children and to take account of their opinions. This paper details a study exploring the influence that the inspectorate grants children and particularly how children's views influence the inspection process. The study draws on interviews and observations of inspectors as well as an analysis of a representative sample (n = 147) of documentation from inspections performed during 2012. The result indicates different inspectorial rationales, which in turn influence the importance children's opinions are assigned in the inspection process. Moreover, the findings demonstrate difficulties in giving children's views substantial impact on the inspection process. This can be attributed to the fact that most of the regulatory quality criteria used by the authority diverge from the aspects of care that children attach most importance to. The study adds empirical findings to how the participation of children is realized during inspection. [ABSTRACT FROM AUTHOR]

Summary: Objective: This paper aims to assess association between breastfeeding and maternal immigration background and body mass index development trajectories from age 2 to 16 years. Methods: A cohort of children born in Stockholm during 1994 to 1996 was followed from age 2 to 16 years with repeated measurement of height and weight at eight time points (n = 2278). Children were categorized into groups by breastfeeding status during the first 6 months of life and maternal immigration background. Body mass index (BMI) trajectories and age at adiposity rebound were estimated using mixed‐effects linear models. Results: Body mass index trajectories were different by breastfeeding and maternal immigration status (P‐value < 0.0001). Compared with exclusively breastfed counterparts, never/short breastfed children of Swedish mothers had a higher BMI trajectory, whereas never/short breastfed children of immigrant mothers followed a lower BMI trajectory. Ages at adiposity rebound were earlier for higher BMI trajectories regardless of maternal immigration background. Conclusion: Differences in BMI trajectories between offspring of immigrant and of Swedish mothers suggest a lack of beneficial association between breastfeeding and long‐term BMI development among children of immigrant mothers. Given the relation between long‐term BMI development and risk of overweight/obesity, these differences challenge the notion that exclusive breastfeeding is always beneficial for children's BMI development and subsequent risk of overweight/obesity. [ABSTRACT FROM AUTHOR]

Background In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. Methods A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. Results A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age. Conclusions The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Intensive care is one of the most resource‐intensive forms of care because seriously ill patients are cared for in units with high staffing levels. Studies show that the number of registered nurses (RNs) per patient and nurse education level affects patient outcome. However, there is a lack of studies that consider how nurses/patient ratio with an advanced educational level of specialized nurses in intensive care, affect the intensive care performed in different patient populations. Aim: To investigate if differences in patient characteristics and nurse–patient ratio have an impact on the quality of care. Study Design: This is a retrospective observational study with a review of all patients >15 years receiving care at two general intensive care units with different nurse/patient ratio (unit A, 1:1 nurse/patient ratio and unit B, 0.5:1 nurse/patient ratio). Results: There was no significant difference in the initial severity of illness between the units. However, younger patients, male patients and patients requiring surgery entailed a higher workload and a longer intensive care unit (ICU) stay despite a 1:1 critical care nurse/patient ratio. A small difference, but not significant, with more unplanned re‐intubations occurred at unit A compared with unit B. Conclusion: The differences in the nurse/patient ratio did not reflect a difference in the severity of illness among admitted patients but might be explained by patient characteristics with different needs. Relevance to Clinical Practice: Health care managers should consider not only the number of nurses but also their educational level, specific competencies and skills mix and nursing‐sensitive measures to provide high‐quality ICU care in settings with different patient characteristics. Nursing‐sensitive patient outcomes should be considered in relation to nurse/patient ratio, as important to measure to ensure a high quality of patient care in the ICU. [ABSTRACT FROM AUTHOR]

Objectives: Pressure ulcers cause suffering, prolong care periods, and increase mortality. The aim was to describe and analyze the documentation of pressure ulcers and focused on the medical records from an internal medicine ward in a university hospital in western Sweden. Methods: A quantitative, retrospective review of medical records was conducted for all care events (n = 1,458) with descriptive statistics. Results: Documentation of the pressure ulcers in care plans was 2.1% (n = 31) compared to 6.7 % (n = 46) within final notes written by registered nurses (RN), a lower result compared to PPM (n = 3/14, 21.4%). Risk assessments were carried out in 68 (4.7%) care events, and 31 care plans included pressure ulcers. Moreover, 198 cases of tissue damage were documented, 43 (21.7%) defined as pressure ulcers, the other 147 (74.2%) lacked definition. Conclusions: Differences (2.1%–21.4%) highlight improvements; knowledge and communication of pressure ulcers ensure reliable documentation in medical records. [ABSTRACT FROM AUTHOR]

Aim: Having a culture of safety is crucial when providing high‐quality health care, yet preventable adverse events are common in the Swedish healthcare system, especially in the field of surgical care. Research shows that patient participation can improve patient safety. This study aimed to explore patients' experience of the safety leaflet, "Your safety in hospital," including participation in care and feelings of safe care. Design: This study uses a descriptive qualitative study design. Methods: Twenty patients from surgical wards received patient safety leaflets and participated in semi‐structured interviews during their hospital stay. Data were analysed using qualitative content analysis. Results: Three categories emerged from the analysis: Positive and negative experiences of provided information, Experiences of participation in own care, and Feelings of being safe arising from a perception of good quality care. Most participants were satisfied with their participation in their care and felt safe during their hospital stay. Oral information about the safety leaflet from healthcare personnel was lacking. [ABSTRACT FROM AUTHOR]

Aim: To describe how Swedish emergency nurses experience the preconditions of providing safe care during the COVID‐19 pandemic when collecting blood culture in the emergency department. Design: A qualitative exploratory design using content analysis with a manifest approach. Method: Semi‐structured interviews were conducted with 13 emergency nurses working in the emergency department. Results: The analysis resulted in one main category: unprecedented preconditions create extraordinary stress and jeopardize safe care when collecting blood culture. This main category includes four additional categories: organizational changes, challenges in the isolation room, heavy workload creates great stress, and continuous learning. Conclusion: The COVID‐19 outbreak has made the emergency department a workplace where constant changes of routines combined with new information and reorganization risk jeopardize safe care during blood culture sampling. Accordingly, high workload and stress have been identified as a reason for emergency nurses not following guidelines. It is therefore necessary to optimize the preconditions during blood culture sampling and identify situations where there are shortcomings. [ABSTRACT FROM AUTHOR]

Introduction: Worldwide, countries are struggling with strained healthcare systems, especially due to the growing number of frail elderly. Developing the role of nurse practitioner in the care of the frail elderly is therefore of interest to make the care chain more efficient. In Sweden, the role is in an early development phase, but more research is needed. Aim: The aim was to investigate how stakeholders at the national level express the challenges and opportunities of the evolving nurse practitioner role in Swedish municipal elderly care. Method: A Delphi survey technique with three rounds of electronic questionnaires was used. Twenty‐seven experts responded to the first questionnaire, containing two open questions; what opportunities respectively challenges do you see in developing and implementing the nurse practitioner role in municipal elderly care? The following questionnaires consisted of statements to rate using a four‐grade Likert scale, and 20 and 17 responded to the second and third, respectively. The first round was analysed using content analysis, and the other two with descriptive statistics. Results: Thirty‐four statements about challenges and opportunities related to the nurse practitioner role in municipal elderly care were identified and rated as important. Conclusion: The findings provide knowledge that can contribute to discussions and decisions to refine the nurse practitioner role in Swedish municipal elderly care. The nurse practitioner role may contribute with much‐needed competence to the elderly care. However, it is important to consider the challenges that need to be overcome before the development of the role. To solve this, it is necessary to have clear national guidelines concerning issues of education, title protection and the mandate and authority of the NP role. [ABSTRACT FROM AUTHOR]

Background: The principles of palliative care were developed in hospices and specialised palliative care units and have not been sufficiently adapted to and evaluated in nursing homes. Therefore, an educational intervention from an interprofessional education perspective was performed within the project Implementation of Knowledge‐Based Palliative Care in Nursing Homes. The aim of this study was to evaluate professionals' experience of palliative care delivery before and after the educational intervention. Methods: The educational intervention for nursing home professionals consisted of five 2‐h seminars over 6 months at 20 nursing homes. The intervention and control groups consisted of 129 and 160 professionals from 30 nursing homes respectively. The questionnaire 'Your experience of palliative care' was completed 1 month before (baseline) and after (follow‐up) the intervention. Descriptive and inferential statistics were calculated. Results: The positive effects at follow‐up concerned the use of a valid scale for grading symptoms, attendance to the needs of next of kin (including bereavement support), documentation of older persons' wishes regarding place to die and conversations about their transition to palliative care and about how they were treated. Conclusions: This study demonstrates a promising interprofessional educational model. However, the paucity of improvements brought to light at follow‐up indicates a need for research directed towards a revision of this model. Supervision of professionals during palliative care delivery is one suggestion for change. [ABSTRACT FROM AUTHOR]

Rationale: Undergraduate nursing students' learning opportunities to practice caring behaviours to assure compassionate and competent nursing practice with standardised patients are few. Earlier studies primarily focused on practicing communication skills in relation to mental health or developing psychomotor skills while caring for a patient with a specific diagnosis. Aim: The study aim was to describe undergraduate nursing students' experiences of practicing caring behaviours with a standardised patient. Method: A sample of forty‐eight undergraduate nursing students in semester four at a school of nursing in southern Sweden, enrolled in a full‐time, 5‐week, on‐campus elective caring behaviour course, were at the first and last week individually video‐recorded during two caring behaviour simulations encountering a standardised patient. After observing each of their video‐recordings, students completed written reflections focusing on their own compassionate and competent verbal and nonverbal caring behaviour. In total, 96 individual written reflections were analysed using qualitative content analysis to describe the experience. Results: One main theme emerged: The challenge of being mindfully present in patient encounters. Four themes further described the experience: A challenging but realistic learning experience, learning the impact of nonverbal behaviour, recognising the complexity of verbal behaviour, and learning to be with the patient instead of only doing for the patient. Conclusion: When caring is intertwined with visible and realistic nursing practice in simulations using standardised patients it facilitates undergraduate nursing students learning compassionate and competent caring behaviour. The learning experience opened the students' eyes to the impact of practicing caring, recognising that being with is not the same as doing for the patient, and thus, how challenging it is to be mindfully present in patient encounters. Designing caring behaviour simulations with standardised patients is a feasible and efficacious educational learning didactic to facilitate students' learning caring behaviour and enhancing patients' experiences. [ABSTRACT FROM AUTHOR]

Introduction: Persons with dementia experience time‐related problems, but there is a lack of instruments evaluating their time processing ability and daily time management. This study aimed to evaluate the psychometric properties of the instruments KaTid®‐Senior measuring time processing ability, and Time‐S© Senior and Time‐Proxy© measuring daily time management for persons with dementia. Methods: Persons with dementia (n = 53) and their significant others (n = 49) participated in the study. Rasch analyses were used to evaluate the instruments' rating scale functioning; internal scale validity; person‐response validity; unidimensionality; person‐separation reliability; and internal consistency. Versions excluding items with poor fit to the Rasch model were also evaluated. Results: Overall, the Rasch analyses showed acceptable psychometric properties. All instruments met the criteria for unidimensionality and the reliability was good. More challenging items should be added in KaTid‐Senior for better targeting of persons with mild dementia. Person‐response validity issues in Time‐S Senior need to be addressed. Conclusion: The instruments can validly and reliably be used to assess time processing ability and daily time management in persons with dementia in clinical research and healthcare settings. In turn, this can contribute to the development of methods to compensate for impaired time processing ability and daily time management. The assessments can also increase the possibility of early detection of impaired time processing ability and daily time management, thereby facilitating adequate timing of interventions and enhanced occupational performance. [ABSTRACT FROM AUTHOR]

Background: Promoting healthy work environment as a manager in nursing homes is important to safeguard staff health and well‐being as well as care quality when facing increasing demands. The impact of leadership on staff work environment needs further exploration. Objectives: To describe longitudinal changes in nursing home leadership, direct care staff characteristics, job strain and social support. Methods: This study has a repeated cross‐sectional design, a five‐year follow‐up study. Nursing home staff in 181 corresponding units (n = 1253 in 2014 and n = 1176 in 2019) completed surveys about leadership, staff job strain and social support in a five‐year follow‐up study. Descriptive and regression analyses were conducted. Results: A higher degree of leadership defined by coaching and providing direct feedback to care staff, handling conflicts in a constructive way and having control of the clinical work, was significantly associated with a lower degree of job strain and a higher degree of social support among staff, with stronger associations at follow‐up. The proportion of enrolled nurses increased significantly at follow‐up. Conclusions: Leadership is increasingly important for staff work environment, especially in times of increased workload and decreasing collegiality and deteriorating work atmosphere at work. Implications for Practice: Stakeholder and policy makers in nursing home care may reflect on how managers' leadership is prioritised in these environments because such leadership is associated with staff job strain and social support. Managers striving to improve the work situation of staff may consider their own role and allow flexibility in how and when the work can be performed. [ABSTRACT FROM AUTHOR]

Background: NHs have been severely exposed during the COVID‐19 pandemic. Little is known about how staff who provide practical daily care of older residents experienced work during the pandemic. The aim of this study was to understand how nursing assistants (NAs) experienced their work at nursing homes (NHs) for older people during the first wave of the COVID‐19 pandemic. Methods: We conducted a qualitative study of focus group discussions with in total 20 participants from four NHs in Stockholm, Sweden. Discussions were held in November 2020. Transcripts were analyzed using inductive thematic analysis. Results: We identified three major themes: 1) We felt abandoned, scared and disrespected, 2) We made sure we made it through, and 3) We can do good work with appropriate resources. NAs felt disregarded as they were often left alone without adequate support from managers, registered nurses and the municipalities. NAs felt distressed and guilty and developed their own strategies to cope and manage their work. Conclusion and Implication for Practice: During the first wave of the COVID‐19 pandemic NAs felt abandoned and burdened due to lack of leadership. Organizational improvements are required to protect the wellbeing of NAs and to ensure sustainability of patient safety. NAs are crucial in the care for vulnerable older people and their experiences should constitute a keystone for development of future policy and practice in NHs. [ABSTRACT FROM AUTHOR]

Background: Although extubation is a high‐risk phase associated with risk of severe complications for patients undergoing general anaesthesia, there is a lack of research about this phenomenon from the perspective of anaesthesiologists' experiences of the process of extubation in the anaesthesia setting. Aim: To describe Swedish anaesthesiologists' experiences of the extubation process in the anaesthesia setting. Methods: A qualitative descriptive design study with individual semi‐structured interviews was conducted in three hospitals in Sweden with a total of 17 anaesthesiologists. A qualitative manifest content analysis method was used to analyse the data. Results: The anaesthesiologists' experiences were described in two categories: To assemble sensibilities, where the anaesthesiologists are receptive to inputs, create tailored plans, are guided by emotions and experiences, and sense the atmosphere in the process of extubation; and To stay focused, where they understand the importance of preparation and being prepared, and of being calm and strategic, and of needing to trust the registered nurse anaesthetist in the process of extubation. Conclusions: Decision‐making regarding the process of extubation does not rely solely on monitoring signs; rather, the anaesthesiologists described how, by looking beyond the monitors and by being receptive to inputs from the patient and other professionals, their experience and intuition guides them through the process of extubation. [ABSTRACT FROM AUTHOR]

Background: Prostate cancer is one of the most common types of cancer in men and could occur without symptoms. Screening has been debated but remains controversial and, in most countries, organized population‐based screening does not exist. The aim of this study was to describe men's experiences of receiving a prostate cancer diagnosis after opportunistic screening. Methods: This study is a secondary analysis from interviews with 17 men (aged 56–80 years) who had undergone curative treatment for prostate cancer. Data were collected in an urban region of Sweden through interviews conducted face to face or by telephone. An inductive content analysis was used with Consolidated criteria for Reporting Qualitative research as a reporting checklist. Results: Two main categories were identified. Screening is a lifesaver enclosed by ethical dilemmas reflects how men considered screening as a lifesaving test. Testing was surrounded by injustice and an eagerness to encourage other men to undergo screening. Facing challenges during diagnosis reflects the men's experiences of being in an unknown field yet expected to engage in decision‐making concerning appropriate treatment. Receiving the diagnosis rendered mixed emotions about having a cancer disease, that the treatment could cause lifelong symptom distress and the men described being hesitant to talk about their diagnosis. Conclusions: The findings highlight men's opinions about screening and that the lack of routine screening represents injustice. The men considered this as an ethical question of lifesaving justice, while stakeholders may argue that screening could lead to unnecessary suffering and overtreatment. Men do not always talk openly about their diagnosis, linked to the fact that it concerns intimate areas. It is important to balance the information in relation to shared decision‐making regarding treatment. Health care professionals have an ethical responsibility to support and coach the patient in their decision. Patient or Public Contribution: This study was based on interviews with men who had experienced a diagnosis of prostate cancer. [ABSTRACT FROM AUTHOR]

Aim: To explore the role of CRNs in Sweden and differences in competences and tasks, using the Clinical Trial Nursing Questionnaire – Swedish version (CTNQ‐SWE). Design: A cross‐sectional survey. Methods: Participants were identified through strategic sampling. Data were analysed by descriptive and comparative statistics. Results: The respondents were experienced nurses who felt proficient in their role, they felt more acceptance by the principal investigators than by nursing colleagues. A majority of CRNs are involved in all procedures specified in the CTNQ‐SWE. The most often performed tasks, also rated as the most important by the CRNs, concerned informed consent and management of investigational products. The education was often informal: with a lack of job descriptions and professional development plans. Need of formal specialist education was expressed. Conclusions: Knowledge about the role description can be used by clinical research enterprise internationally and healthcare organizations aiming to support CRNs in their role. [ABSTRACT FROM AUTHOR]

Background and purpose: Social engagement is an important active aging strategy to promote older adults' mental health. The purposes of this study were to compare social engagement in older populations around the world and explore associations with mental health outcomes. Materials and methods: An international cross‐sectional survey was conducted from 2017 to 2019. Data were retrieved from The International Social Survey Programme for a secondary data analysis across 30 countries. This study applied the Taxonomy of Social Activities and its six levels as operational definitions for a consistent concept of social engagement for international comparisons. Results: In total, 9403 older adults with a mean age of 72.85 ± 6.40 years responded. The highest levels of older adults' social engagement were found in Switzerland, Thailand, and New Zealand. Older adults of a higher age, with a lower educational level, who were permanently sick or disabled, who had no partner, who were widowed or whose civil partner had died, who lived alone, and who had lower self‐placement in society had significantly lower social engagement than did their counterparts. In the regression model, older adults' social engagement positively predicted general health, self‐accomplishment, and life satisfaction, but negatively predicted loneliness and depression. Conclusions: In aging societies worldwide, encouraging older adults' social engagement would be beneficial to promote mental health. Implications for nursing practice and health policies: Community professional nurses can develop strategies of social engagement based on the needs and sociodemographic factors of older adults to improve their mental health. Developing efficient strategies and local policies by learning from successful experiences in other countries is important to promote social engagement in aging societies. [ABSTRACT FROM AUTHOR]

Aims: There are few cohorts of type 1 diabetes that follow individuals over more than half a century in terms of health outcomes. The aim of this study was to examine associations between type 1 diabetes, diagnosed before age 18, and long‐term morbidity and mortality, and to investigate whether cognitive ability plays a role in long‐term morbidity and mortality risk. Methods: In a Swedish cohort, 120 men with type 1 diabetes and 469 without type 1 diabetes were followed between 18 and 77 years of age as regards morbidity and mortality outcomes, and impact of cognitive ability at military conscription for the outcomes. In Cox regression analyses and Kaplan‐Meier analyses with log‐rank tests, associations between diabetes and cognitive ability respectively, and outcomes (mortality, cardiovascular morbidity and diabetes complications) were investigated. Results: Men with type 1 diabetes suffered from dramatically higher mortality (HR 4.62, 95% CI: 3.56–5.60), cardiovascular mortality (HR 5.60, 95% CI: 3.27–9.57), and cardiovascular events (HR 3.97, 95% CI: 2.79–5.64) compared to men without diabetes. Higher cognitive ability at military conscription was associated with lower mortality in men without diabetes, but was not associated with any outcome in men with diabetes. Conclusions: In this historical cohort study with 60 years of follow‐up time and a less effective treatment of diabetes than today, mortality rates and cardiovascular outcomes were high for men with type 1 diabetes. Morbidity or mortality did not differ between those that had low to normal or high cognitive ability among men with type 1 diabetes. [ABSTRACT FROM AUTHOR]

Introduction: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline. Methods: A cross‐sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59–60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT). Results: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy. Conclusion: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy. Patient and Public Contribution: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate. [ABSTRACT FROM AUTHOR]

Background: Involving service users in inpatient care and recovery planning has gained interest worldwide. Our purpose was to evaluate the process of implementation of a coproduced Recovery Guide (RG) intervention in 22 inpatient wards in Sweden, in terms of context, implementation process and mechanisms of impact over 12 months. Methods: A mixed method design and a process evaluation framework were used to guide data collection and to deductively analyze perspectives and descriptive statistics of delivery from three stakeholder groups. Results: Results showed that although initial contextual barriers were present (e.g., lack of resources, and interest, uncertainty in the organization, a dominant illness perspective), it was possible to implement the RG in 14 wards, where 53% of admitted service users received the intervention. Legitimacy of the intervention, engaged managers and staff, capacity of staff and ward organization, coproduction and continuous support from user organization were critical mediators. Mechanisms of impact concerned (1) a new perspective on mental health, well‐being and recovery, (2) capacity building of a recovery approach in inpatient settings and (3) a meaningful outlet for users' thoughts and feelings on recovery, sharing narratives and influencing care and goals. Conclusions: The RG intervention has the potential to promote a recovery approach in inpatient mental health services (MHSs). Coproduction among stakeholders created trust and a sustainable implementation that made it possible for wards to resume implementation when contextual barriers had been resolved. Patient and Public Contribution: The current study involved stakeholders including a service user organization, the public, first‐line managers and staff (including peer support workers) in inpatient and community MHS and researchers, who greatly contributed to the implementation programme, including codesign of the RG intervention as well as coproduction of the implementation in inpatient MHS. All authors have their own lived experiences of mental health problems as a service user or as a relative. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to identify the factors influencing the changes in the number of teeth present and the number of healthy or filled surfaces between two time points. Materials and Methods: Repeated cross‐sectional data from population‐based studies, namely the German Oral Health Studies (DMS‐III vs. DMS‐V), the Studies of Health in Pomerania (SHIP‐START‐0 vs. SHIP‐TREND‐0), and the Jönköping study (2003 vs. 2013), were analysed. Oaxaca decomposition models were constructed for the outcomes (number of teeth, number of healthy surfaces, and number of filled surfaces). Results: The number of teeth increased between examinations (DMS: +2.26 [adults], +4.92 [seniors], SHIP: +1.67, Jönköping: +0.96). Improvements in education and dental awareness brought a positive change in all outcomes. An increase in powered toothbrushing and inter‐dental cleaning had a great impact in DMS (adults: +0.25 tooth, +0.78 healthy surface, +0.38 filled surface; seniors: +1.19 teeth, 5.79 healthy surfaces, +0.48 filled surface). Inter‐dental cleaning decreased by 4% between SHIP‐START‐0 and SHIP‐TREND‐0, which negatively affected the outcomes. Conclusions: From this study, it can be concluded that education may be the most important factor having a direct and indirect effect on the outcomes. However, for better oral health, powered toothbrushing and inter‐dental cleaning should not be neglected. [ABSTRACT FROM AUTHOR]

Background: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. Objective: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information. Methods: In this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. Results: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. Patient or Public Contribution: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups. [ABSTRACT FROM AUTHOR]

Background: Community services for Swedish people with intellectual disability (ID) are intended to support self‐determination and integrity. Legislation does not allow the use of restrictive or coercive measures. Aim: The aim of this study is to identify the extent of, rationale for, and strategies staff believe would reduce the use of restrictive measures in group homes and daily activities services for people with ID. Method: A survey was sent to all staff in group homes and daily activities in one large Swedish municipality. The survey comprised four Likert style questions and one free text question, addressing the type of and reasons for restrictive measures, and how much staff value their replacement. A total of 250 surveys were completed. Results: A third of staff reported that some restrictive measures were used daily or weekly, primarily to protect and support service users. Adequate numbers of staff, better service design, and training were considered necessary for change. Conclusion: Staff report structural reasons, such as staffing, resources time, lack of training, and supervision for using restrictive measures. Staff see reducing the use of restrictive measures as requiring structural changes with engagement from the whole organization. [ABSTRACT FROM AUTHOR]

Background: In coming decades, the number of people affected by illnesses who need palliative care will rise worldwide. Registered Nurses are in a central position in providing this care, and education is one of the necessary components for meeting coming requirements. However, there is a lack of knowledge about palliative care in undergraduate nursing education curricula, including the extent of the education provided and the related pedagogical methods. Aim: The aim was to investigate the extent, content and pedagogical methods used and to explore lecturers' experiences of being responsible for teaching and learning about palliative care for undergraduate nursing students on nursing programmes at Swedish universities. Setting: All 24 universities responsible for providing undergraduate nursing education in Sweden participated. Participants: One lecturer with in‐depth knowledge about palliative care or end‐of‐life care education participated in the quantitative (n = 24) and qualitative (n = 22) parts of the study. Method: A mixed‐method research study with an explorative design was used. Descriptive statistics were used to analyse quantitative data, and content analysis for qualitative, with both also analysed integratively. Results: Few undergraduate nursing programmes included a specific course about palliative care in their curricula, however, all universities incorporated education about palliative care in some way. Most of the palliative care education was theoretical, and lecturers used a variety of pedagogical strategies and their own professional and personal experience to support students to understand the palliative care approach. Topics such as life and death were difficult to both learn and teach about. Conclusions: There is a need for substantial education about palliative care. Lecturers strive on their own to develop students' understanding and increase the extent of palliative care education with innovative teaching strategies, but must compete with other topics. Palliative care teaching must be prioritised, not only by the universities, but also by the national authority. [ABSTRACT FROM AUTHOR]

Background: Kangaroo mother care including skin‐to‐skin care aims to overcome the negative effects of separating parents and infants and to increase the quality of care for infants and parents in need of neonatal care. In most cases where inter‐hospital transport is needed, the infant is placed in a transport incubator, which increases the risk of separation due to ambulance service restrictions that imply that parents are not allowed to accompany these transport trips. Aim: To illuminate parents' experiences of holding their infant in a kangaroo position during neonatal ground ambulance transport. Study design: A qualitative design with an inductive approach. Methods: A total of 11 open interviews with Swedish parents were conducted two to seven days after their infant had been transferred in a kangaroo position between hospitals. The transcribed interviews were analysed using qualitative content analysis. Results: The emerged overarching category was "an uninterrupted closeness chain." The parents experienced that holding their infant during the transport extended the time they were close to their infant. Using the kangaroo position during ground ambulance transport also created a feeling of being important as a parent, as their participation during transport was appreciated. Parents' experiences were allocated into three categories: "Strengthen the feeling of being important as a parent," "promote security and create a positive environment for the baby" and "the professionals' attitude promotes security." Conclusion and relevance for clinical practice: This knowledge about parents' experiences is important in the continued work to develop interventions that focus on promoting zero separation in neonatal care. Using kangaroo position in a safety harness during ambulance transport enhances zero separation and closeness. To encourage the implementation of kangaroo position during ambulance transport, further research is needed to address parents' experiences of zero separation during transport of infants to a higher level of care. [ABSTRACT FROM AUTHOR]

Objectives: The proportion of older people in the population is increasing rapidly. Along with this comes an increase in the number of people requiring assistance in daily living, including oral care. Swedish law stipulates that care personnel who work with older people should be offered oral health education every year. The aim of this study was to investigate oral health care beliefs among such personnel. Methods: A questionnaire study was conducted among 2167 personnel providing care to older people at special accommodation sites and in home care. Data were collected using the Nursing Dental Coping Beliefs Scale. Descriptive statistics were calculated and logistic regression analysis was performed. Results: Personnel working in home care had lower odds of having an internal locus of control than those working in special accommodation, and personnel with less than 10 years of working experience had lower odds than their more experienced counterparts. Men had higher odds of having an external locus of control than women. Conclusions: It seems important to ensure that home care personnel and less experienced personnel attend oral care educational sessions, and to encourage male staff to focus on oral care work. [ABSTRACT FROM AUTHOR]

The present study aims to describe accelerometer‐assessed physical activity (PA) patterns and fulfillment of PA recommendations in a large sample of middle‐aged men and women, and to study differences between subgroups of socio‐demographic, socio‐economic, and lifestyle‐related variables. A total of 27 890 (92.5% of total participants, 52% women, aged 50–64 years) middle‐aged men and women with at least four days of valid hip‐worn accelerometer data (Actigraph GT3X+, wGT3X+ and wGT3X‐BT) from the Swedish CArdioPulmonary bioImage Study, SCAPIS, were included. In total, 54.5% of daily wear time was spent sedentary, 39.1% in low, 5.4% in moderate, and only 0.1% in vigorous PA. Male sex, higher education, low financial strain, born in Sweden, and sedentary/light working situation were related to higher sedentary time, but also higher levels of vigorous PA. High BMI and having multiple chronic diseases associated strongly with higher sedentary time and less time in all three PA intensities. All‐year physically active commuters had an overall more active PA pattern. The proportion fulfilling current PA recommendations varied substantially (1.4% to 92.2%) depending on data handling procedures and definition used. Twenty‐eight percent was defined as having an "at‐risk" behavior, which included both high sedentary time and low vigorous PA. In this large population‐based sample, a majority of time was spent sedentary and only a fraction in vigorous PA, with clinically important variations between subgroups. This study provides important reference material and emphasizes the importance of a comprehensive assessment of all aspects of the individual PA pattern in future research and clinical practice. [ABSTRACT FROM AUTHOR]

Many researchers and practitioners consider ethnic segregation in neighbourhoods or schools detrimental to migrants' acculturation in host societies. Empirically, however, segregation is a 'mixed bag' and its effects depend crucially on the investigated acculturation domain (e.g., negative for language skills, positive for well‐being). As most prior studies have focused on a restricted spectrum of acculturation, a comprehensive assessment within one single study is needed to establish comparability across different acculturation domains. Among over 8000 immigrant‐background students from four countries, we investigated the association of classroom segregation, defined as opportunities for contact with natives and other migrants, with a broad spectrum of acculturation (academic, attitude‐related, identity‐related, social, health‐related, and psychological criteria). Some findings were consistent (e.g., academic acculturation), some were contrary to prior research (e.g., social acculturation). In sum, our results shed light on the 'mixed bag' of segregation and contribute to the understanding of a crucial social issue. [ABSTRACT FROM AUTHOR]

Aims/hypothesis: In persons with type 1 diabetes, the risk of cancer remains controversial. We wanted to examine the excess risk of cancer in a large population-based cohort diagnosed with type 1 diabetes before 15 years of age. Study population and methods: From 1 July 1977 to 31 December 2013, we prospectively and on a national scale included 18,724 persons (53% men) with childhood-onset type 1 diabetes. For each person with type 1 diabetes, we selected four referents, matched for the date at birth and municipality of living at the time when the case developed diabetes. Cases and referents were linked to national registers of cancer and of the cause of death. Results: A total of 125 persons (61% women) with diabetes had 135 different cancers, all diagnosed after the diabetes diagnosis. The median duration from diabetes diagnosis to first cancer diagnosis was 19 years (interquartile range 10-26). The median age at cancer diagnosis in the diabetes group was 28 years (interquartile range 20-35). The overall standardized incidence ratio (95%), using the Swedish general population as referents for women with diabetes was 1.28 (1.02, 1.58) and when comparing women with diabetes with matched referents, we found a hazard ratio of 1.42 (1.10, 1.85). No elevated risk was seen for men. Cancers of the breast and testis were the most common types in women and men respectively. Conclusions: Women with childhood-onset type 1 diabetes had a small but significantly elevated risk of cancer. No such tendency was seen for men. The reason behind this is unclear. [ABSTRACT FROM AUTHOR]

Objective: The proportion of older people is increasing and reflects in the demand on ambulance services (AS). Patients can be more vulnerable and increasingly dependent, especially when their decision‐making ability is impaired. Self‐determination in older people has a positive relation to quality of life and can raise ethical conflicts in AS. Hence, the aim of this study was to empirically explore attitudes among Swedish ambulance clinicians (ACs) regarding older patients' self‐determination in cases where patients have impaired decision‐making ability, and who are in urgent need of care. Materials and methods: An explorative design was adopted. A Delphi technique was used, comprising four rounds, involving a group (N = 31) of prehospital emergency nurses (n = 14), registered nurses (n = 10) and emergency medical technicians (n = 7). Focus group conversations (Round 1) and questionnaires (Rounds 2–4) generated data. Round 1 was analysed using manifest content analysis, which ultimately resulted in the creation of discrete items. Each item was rated with a five‐point Likert scale together with free‐text answers. Consensus (≥70%) was calculated by trichotomising the Likert scale. Results: Round 1 identified 108 items which were divided into four categories: (1) attitudes regarding the patient (n = 35), (2) attitudes regarding the patient relationship (n = 8), (3) attitudes regarding oneself and one's colleagues (n = 45), and (4) attitudes regarding other involved factors (n = 20). In Rounds 2–4, one item was identified in the free text from Round 2, generating a total of 109 items. After four rounds, 72 items (62%) reached consensus. Conclusions: The findings highlight the complexity of ACs' attitudes towards older patients' self‐determination. The respect of older patients' self‐determination is challenged by the patient, other healthcare personnel, significant others and/or colleagues. The study provided a unique opportunity to explore self‐determination and shared decision‐making. AS have to provide continued ethical training, for example to increase the use of simulation‐based training or moral case deliberations in order to strengthen the ACs' moral abilities within their professional practice. Implications for practice: Ambulance services must develop opportunities to provide continued training within this topic. One option would be to increase the use of simulation‐based training, focusing on ethical aspects of the care. Another option might be to facilitate moral case deliberations to strengthen the ACs' abilities to manage these issues while being able to share experiences with peers. These types of interventions should illuminate the importance of the topic for the individual AC, which, in turn, may strengthen and develop the caring abilities within an integrated care team. [ABSTRACT FROM AUTHOR]

The role of nurses and nursing in CAP inpatient care is unclear, and nurses are at risk of moral distress due to having to deal with complex demands while lacking organizational support. This study aimed to describe nurses' and assistant nurses' experiences working in child and adolescent psychiatric inpatient care. Eight nurses and seven assistant nurses working in a child and adolescent ward in Sweden participated in the study. Data were collected in 2019 using semi‐structured qualitative interviews and subject to qualitative content analysis. Results describe nurses' and assistant nurses' experiences of child and adolescent psychiatric inpatient care in one theme, Constrained nursing, and four categories: Striving to be there for children and parents; Finding a way to manage work; Depending on others; Lacking nursing leadership. Findings suggest that good, person‐centred and recovery‐oriented nursing practice can exist in CAP inpatient care but remain unrecognized and lacking support due to unclear roles and responsibilities and lack of nursing leadership. This study is reported in accordance with the COREQ guidelines. [ABSTRACT FROM AUTHOR]