Search

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]

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: 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]

Traditional approaches to system management are not suited to highly uncertain conditions. Hard system approaches with a top‐down management approach are often used to manage well‐defined systems that are not easily able to cope with uncertainty. Soft system approaches of the with bottom‐up or participative style may cause a lack of conformance to industry standards. Few studies have investigated these approaches within the context of COVID‐19 pandemic. Therefore, this paper aims to use the philosophy of Total Systems Intervention to investigate the applicability of an integrated management approach to cope with the uncertainty of COVID‐19. Three different countries from Europe, Oceania and Asia are selected as typical case studies to clarify the strengths and weaknesses of differing management approaches. The case studies demonstrate that using an integrated management approach can potentially assist decision‐makers to deal with crises and conclusively reveal the superiority of the integrated approach, independent of cultural milieu. [ABSTRACT FROM AUTHOR]

Objectives: To determine the frequency of use of the core outcome domains published by the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) in burning mouth syndrome (BMS) randomized controlled trials (RCTs). Methods: This systematic review, conducted as part of the World Workshop on Oral Medicine VII (WWOM VII), was performed by searching the literature for studies published in PubMed, Web of Science, PsycINFO, Cochrane Database/Cochrane Central, and Google Scholar from January 1994 (when the first BMS definition came out) through October 2017. Results: A total of 36 RCTs (n = 2,175 study participants) were included and analyzed. The overall reporting of the IMMPACT core and supplemental outcome domains was low even after the publication of the IMMPACT consensus papers in 2003 and 2005 (mean before IMMPACT consensus publication = 2.6 out of 6; mean after IMMPACT publication = 3.8 out of 6). Use of validated assessment tools recommended by the IMMPACT consensus was scarce (1.9 out of 6). None of the RCTs reviewed cited the IMMPACT consensus papers. Conclusions: The underreporting of IMMPACT outcome domains in BMS RCTs is significant. Raising awareness regarding the existence of standardized outcome domains in chronic pain research is essential to ensure more accurate, comparable, and consistent interpretation of RCT findings that can be clinically translatable. [ABSTRACT FROM AUTHOR]

Background: Patients intoxicated after abusing illicit drugs constitute a significant proportion of patients cared for in intensive care units. Intensive critical care nurses who nurse accidentally intoxicated patients face complex and demanding situations, and there is a lack of studies regarding this topic. Aims and objectives: To illuminate Swedish intensive critical care nurses' experiences of nursing accidentally intoxicated patients after abuse of illicit drugs. Design: A qualitative design with an inductive approach was used. Methods: Semi‐structured interviews were conducted with eight intensive critical care nurses at an intensive care unit in Sweden. Data were analysed using qualitative content analysis. Findings: The themes found illuminate intensive critical care nurses' experiences of nursing accidentally intoxicated patients after their abuse of illicit drugs: feeling empathy and a wish to provide dignified care; dreading nursing the patient and feeling a lack of empathy; feeling frustration and questioning the care; lacking knowledge about a complex and challenging situation. Conclusions: It is essential to respond to intoxicated patients with empathy and dignity. Intensive critical care nurses should learn how to identify factors that lead to provocation and agitation in order to reduce the occurrence of dangerous situations in intensive care units. Relevance to clinical practice: To create a caring environment where the interaction becomes more positive and harmonious, an intensive care nurse needs a deep understanding of what a drug abuse disorder means. Moreover, the ability to see the person behind the abuse and to provide non‐judgemental support is required. What is known about this topicPatients intoxicated after abuse of illicit drugs constitute a significant proportion of patients cared for in ICUs worldwide.Intensive critical nurses who nurse accidentally intoxicated patients face complex and demanding situations, and few studies have addressed this topic.What this paper contributesIt is essential to respond to intoxicated patients who are admitted to the ICU with empathy and dignity, as well as to learn how to identify factors that lead to provocation and agitation in order to reduce the occurrence of dangerous situations.Education is warranted and must be enhanced, including knowledge about drug abuse and training in communication and empathyNursing should include an understanding of what the disease of drug abuse means and the development of the ability to see the person behind the abuse and to provide non‐judgemental support. [ABSTRACT FROM AUTHOR]

Grandparents whose grandchildren are exposed to domestic violence are faced with some unique challenges in their grandparenting, which have thus far been little discussed in research. This paper discusses the narratives of 10 Swedish grandparents whose grandchildren have been exposed to violence towards their mother. The aim was to explore grandparents' narrations of their responses in the face of violence, and their understanding of the role they play in their grandchildren's social networks. Two significant responses are discussed: ‘being there’ and ‘acknowledging the independence and self‐determination of the adult children’. Grandparents experienced these responses as contradictory and felt powerless when it came to their possibilities to protect their grandchildren. The paper suggests that grandparents could be a resource for domestic violence services, and social work practice needs to assess the roles of grandparents of children exposed to domestic violence. Social workers should consider the challenges these grandparents are facing and what support they may need in order to support their grandchildren. [ABSTRACT FROM AUTHOR]

Aim: To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown. [ABSTRACT FROM AUTHOR]

Aim: To describe trends in gastrostomy tube insertion in children with developmental or acquired disorders in Sweden and assess their demographic characteristics.Method: Children aged 0 to 18 years with gastrostomy tube insertions recorded between 1998 and 2014 were identified in the Swedish National Patient Register. Associations between disorder type and year of surgery, as well as age at surgery, were analysed using linear regression analyses. The association between disorder type and mortality 2 years from gastrostomy tube insertion was also analysed using logistic regression analysis.Results: The data for 4112 children (2182 males, 1930 females), with a median age of 2 years (interquartile range=1-8y), were analysed. Children who presented with developmental disorders were the largest group (n=3501, 85%). The most common diagnosis in children with developmental disorders was cerebral palsy (n=165, 4%). In children with acquired disorders, acute lymphoblastic leukaemia (n=117, 3%) was the most common diagnosis. Gastrostomy tube insertions increased from 1998 to 2014, with the greatest increase in children with developmental disorders, who were younger than children with acquired disorders when the gastrostomy tube was first inserted. Age at tube insertion decreased in both groups during the study period. Mortality was higher in children with acquired disorders, suggesting that gastrostomy tube insertion should be part of a palliative care approach.Interpretation: Child characteristics differed depending on whether the underlying disorder was developmental or acquired, suggesting a need for clinical health care guidelines related to the specific goals of gastrostomy tube insertion.What This Paper Adds: Gastrostomy tube insertions increased by 140% from 1998 to 2014 in Sweden. The age of children with developmental disorders decreased by 1 month per year during the study period. Children presenting with developmental disorders were younger than children with acquired disorders when the gastrostomy tube was first inserted. Mortality was higher in children with acquired disorders. [ABSTRACT FROM AUTHOR]

This paper examines caseworkers' efforts to plan and find appropriate interventions for troublesome young people. Strauss's concept of trajectory is applied to analyse how Swedish caseworkers shape and manage the evolving care trajectories using assessments for young people in secure accommodation, i.e. institutional youth assessments. The empirical material consists of surveys to 82 caseworkers concerning 85 institutional youth assessments and interviews with 16 of these caseworkers. The findings reveal ongoing care trajectories that are out of control where the assessments are seen as an opportunity of change for the youths. Diagnoses, confirmations and plans for action are provided through the assessments and used by the caseworkers in negotiations for resources. Three orientations of contributions to the caseworkers' management of care trajectories were found, all reflecting the many uncertainties of child welfare work: child centred, professional and discharge of liability. In conclusion, the caseworkers searched for the right measures to manage change and achieve youth compliance, but it was also a matter of managing professional and organizational contingencies and passing on responsibility. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This paper reports a study conducted to illuminate older adults' perceptions of multiproffesional team's caring skills as success factors for health support in short‐term goal‐directed reablement. The fact that older adults are given perquisites to live in their own homes puts great demands on the professional care given them at home. An option offered could be short‐term goal‐directed reablement delivered by an interprofessional team. This means after periods in hospitals to strengthen their multidimensional health, older adults' reablement processes are supported to return to their daily life as soon as possible. Crucial in making these intentions a reality seems to be identifying the professional's approach that works as success factors for health support in the reablement process. A descriptive qualitative design with a phenomenographic approach based on interviews with 23 older persons who had received short‐term goal‐directed reablement at home after a period at hospital was used. The study was approved by an ethical board. The analysis revealed four major referential aspects of multiproffesional team's caring skills as success factors for health‐support in short‐term goal‐directed reablement: a motivating caregiver, a positive atmosphere‐creating caregiver, a human fellowship‐oriented caregiver and a caregiver that goes beyond the expected. In this study, all caring skills in the continuum are perceived as positively loaded necessities in different situations during the reablement process. Caring skills as success factors are initially shown at a practical level, such as how the professional caregivers encourage and motivate the older persons in different training situations. At a deeper level, the caregivers open their hearts and have the capacity to go beyond the expected in the professional caregiver–patient relationship. The multiproffesional team's best fit caring skills during the home reablement process need to be addressed as evidence base in the area of elderly home care. [ABSTRACT FROM AUTHOR]

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life‐world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care feel humanly focused. An action research group process in 2014–2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third‐year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care. [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]

Personality is generally considered to be biologically founded in temperament, and temperamental qualities have proven to be relatively stable across childhood and into adulthood (Caspi, Roberts & Shiner, ). Temperament predicts important developmental outcomes such as academic performance (Muris, ), and social functioning (Eisenberg, Fabes, Guthrie & Reiser, ), and it has also been found to be strongly related to the etiology and maintenance of internalizing and externalizing psychopathology in children (Muris, Meesters & Blijlevens, ; Nigg, ). To allow for the possibility of making early interventions, identification of potential risk factors (such as temperamental dispositions) is of great importance (Rettew & McKee, ). As temperament is multidimensional and has many different manifestations, parents and teachers are valuable sources in providing information about children's temperament (Rothbart & Bates, ; Tackett, Slobodskaya, Mar et al., ), and caregiver questionnaires are frequently used in child personality research. However, such questionnaires are only useful if their reliability and validity have been established. The aim of the present study was to examine the psychometric properties of the Temperament in Middle Childhood Questionnaire ( TMCQ; Simonds, Kieras, Rueda & Rothbart, ), which focuses specifically on the ages between 7 and 11 years. The TMCQ is the least validated of the Rothbart measures, and although reliability data have been presented, together with some validity data, for a computerized self-report version of the questionnaire (Simonds & Rothbart, ), information about the reliability and validity for the caregiver version is scant. In the present paper, we report such data for a Swedish sample. [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]

Telephone nursing services are expanding globally. Swedish Healthcare Direct is the largest healthcare provider in Sweden. This paper provides a comprehensive understanding of telephone nursing, as reflected by research on Swedish national telephone nursing, and discusses the findings in relation to international literature. A descriptive, mixed-studies literature review was conducted. Twenty-four articles from January 2003 to April 2015 were identified from PubMed, Scopus, and CINAHL, and included. The issues explored in this study are how telephone nursing is perceived by callers, telephone nurses, and managers, and what characterizes such calls. Callers value reassurance, support, respect and satisfaction and involvement in decisions can increase their adherence. The telephone nurses' perspective focused on problems and ethical dilemmas, communication, the decision support tool, and working tasks. The managers' perspective focused on nursing work goals and malpractice claims. Concerning call characteristics, authentic calls, incident reports, and threats to patient safety were considered. Telephone nursing seems safe, but gender can play a role in calls. Future research on caller access, equity, and efficiency, healthcare cost-effectiveness, distribution, and patient safety is needed. [ABSTRACT FROM AUTHOR]

Background: There is no national, validated, generic patient‐reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross‐sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires. Aim: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context. Design: An exploratory sequential mixed‐method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire. Participants: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8–16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid‐Sweden region between October 2020 and June 2022. Results: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3–10 questions in each of the different versions of the questionnaire. Conclusion: The study has resulted in six face‐ and content‐validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries. Patient or Public Contribution: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study. [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]

The present paper reports on a 5-year follow-up of a randomized reading intervention in grade 3 in Sweden. An intervention group (n = 57) received daily training for 12 weeks in phoneme/grapheme mapping, reading comprehension and reading speed, whereas a control group (n = 55) participated in ordinary classroom activities. The main aim was to investigate if there were remaining effects of the intervention on reading-related skills. Previous analyses showed that the intervention group performed significantly better than the control group on spelling, reading speed, reading comprehension and phoneme awareness at the immediate post-test with sustained effects 1 year later. Results from the 5-year follow-up show that the only significant difference between the intervention (n = 47) and the control group (n = 37) was on word decoding. There was also a significant interaction effect of group assignment and initial word decoding, in the way that the lowest-performing students benefitted the most from the intervention. Another aim was to examine if the children identified in a screening (n = 2212) as poor readers in grade 2 still performed worse than typical readers. The analyses showed that the typically developing students (n = 66) outperformed the students identified as poor readers in grade 2 on working memory, spelling, reading comprehension and word decoding. Copyright © 2016 John Wiley & Sons, Ltd. [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]

A distinguishing feature of Swedish child protection is the direct and indirect influence on decision‐making in individual cases by representatives appointed by their elected political parties. As members of local committees, they take the most interventionist and costly decisions themselves, informed by care proposals submitted by professional social workers. Other decisions are delegated to professional social workers. In direct decision‐making, they are supposed to act as laypersons using their own judgement and experience, not as politicians. The aim of this paper is to describe and analyse these committees, their role and responsibilities, and possible influence of politics on child protection. A mixed method was used, with a survey sent to 467 representatives, structured interviews with 99 secretaries of local committees and data drawn from national statistics. The Swedish model is discussed as a hybrid system influenced not only by professional, bureaucratic, political and market governance logics but also by laypersons. One conclusion is that although child protection is directly influenced by politics, the reverse is also true. By exposing politicians to the difficult life circumstances and societal shortcomings experienced by vulnerable children, the system can, in turn, have an impact on politics at the municipal level. [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]

In Sweden, children's health and development are promoted through Primary Child Health Care (PCHC) visits. The children participate in these visits from their own perspective through bodily and verbal expressions. This study explores four-year-old children's expressions when they as actors take part in a PCHC situation. The conceptualisation of the children's expressions reveals various actions that exhibit their affirmative and delaying negotiation strategies to influence and deal with these situations. For PCHC nurses, these findings may encourage to view children as negotiating participants and inspire to sensitivity when inviting children and guiding them through health visits. © 2011 The Author(s). Children & Society © 2011 National Children's Bureau and Blackwell Publishing Limited [ABSTRACT FROM AUTHOR]

Studies have shown that reduced neuromuscular control or strength increases the risk of acute injuries. It is hypothesized that a non-functional movement pattern can predispose for injuries. In the present paper a detailed description of a test battery consisting of nine different tests to screen athletic movement pattern is provided. The aim was to evaluate the inter- and intra-rater reliability of the test battery on a group of male elite soccer players. Twenty-six healthy elite soccer players (17-28 years) were screened. Eighteen participated at a second occasion 7 days later. No significant difference ( P=0.31) was found between test occasion 1 (LS means 18.3, 95% confidence interval 14.9-21.7) and test occasion 2 (18.0, 14.4-21.7) in the mean total score of the test battery. No significant difference in the inter-rater reliability was found between the eight physiotherapists at the two test occasions. The intra-class correlation coefficient was 0.80 and 0.81, respectively. The test battery showed good inter- and intra-rater reliability. The screening battery is easy to use for familiarized professionals and requires minimal equipment. However, further studies are needed to confirm the validity of the test battery in injury prevention, rehabilitation and performance enhancement. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2012; 26; 104-112 My, your and our needs for safety and security: relatives' reflections on using information and communication technology in dementia care Aim: The present paper reports on a study aimed at describing relatives′ reflections on different kinds of information and communication technology (ICT) devices that are used or can be used in the daily care of persons with dementia. Background: Many persons with dementia continue living in their own homes, which requires the support of their relatives. One way to meet the needs of relatives and persons with dementia is to use ICT. Methods: An interview study was conducted in Sweden (2007-2008) with a purposive sample of 14 spouses of a person with dementia. Qualitative content analysis was used to identify categories and themes in the data. Findings: Relatives′ reflections on the use of ICT were described as ICT - a support in daily life, ICT - internal and external conditions and ICT - the decision to use or not use. Based on these categories, a theme was revealed: shifting between different perspectives: my, your and our needs for safety and security. Conclusion: Relatives struggle to create a situation of safety and security in daily life for themselves and the persons with dementia. ICT devices with the right functionality and used at the right time are regarded as useful in solving everyday problems. In the decision to use or not use ICT, the opportunity to create a safe and secure environment overshadows potential ethical problems. Providing early information about ICT to persons with dementia and their relatives could facilitate joint decision-making regarding use of ICT. [ABSTRACT FROM AUTHOR]

The decision to take a young person away from his or her family into out-of-home care and treatment is the most drastic intervention within the statutory powers bestowed upon social services. The results of reports on the quality of residential treatment reveal that state supervision has not proven to be a good substitute for parental care. In this paper we analyse the decision-making process when young persons are placed in residential care. Focus groups and individual interviews with different stakeholders were conducted. The results show that the placements are a collective process involving negotiations between the different parties with a coordinating social worker in the middle, with the aim to bring something to build hope on in often desperate situations, regardless of the specific treatment method used. To inform the process, the social workers draw on a 'collective memory' shared among colleagues in the department. Important signs of quality of a residential unit were the relational and collaborative competence from the staff. The inclination to use soft, diffuse information in decision-making shows a striking lack of evidence upon which social workers can build well-informed and knowledge-based decisions. [ABSTRACT FROM AUTHOR]

Aim: The aim was to illuminate how nurses experience person‐centred care planning using video conferencing upon hospital discharge of frail older persons. Design: Care planning via video conferencing requires collaboration, communication and information transfer between involved parties, both with regard to preparing and conducting meetings. Participation of involved parties is required to achieve a collaborative effort, but the responsibilities and roles of the involved professions are unclear, despite the existence of regulations. Method: A qualitative content analysis was conducted based on 11 individual semi‐structured interviews with nurses from hospitals, municipalities and primary care in Sweden. Results: This study provides valuable insights into challenges associated with care planning via video conferencing. The meeting format, that is video conferencing, is perceived as a barrier that makes the interaction challenging. Shortcomings in video technology make a person‐centred approach difficult. The person‐centred approach is also difficult for nurses to maintain when the older person or relatives are not involved in the planning. [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]

Aim: To translate and culturally adapt the APS for people with end‐stage dementia in various care settings in Sweden and to investigate factors important for clinical implementation. Design: Qualitative study design with interviews with care staff. Methods: After an initial discussion of concepts, the Abbey Pain Scale was translated into Swedish and back into English to check for accuracy. The resulting Swedish version was then revised and culturally adapted through a series of interviews with nursing assistants, nurses and physicians (n = 11) to develop the final Swedish version. Results: A Swedish version of the Abbey Pain Scale was developed. The instrument was considered straightforward and easy to use, but needed adjustments to make it more comprehensible to staff with less education in health care or with other first languages than Swedish. It was found important to carefully introduce new staff members to the instrument, to ensure they understand all the words and items. [ABSTRACT FROM AUTHOR]

Rationale, aim, and objective This study aimed to explore programme theories of a national quality register. A programme theory is a bundle of assumptions underpinning how and why an improvement initiative functions. The purpose was to examine and establish programme theories of a national quality register widely used in Sweden: Senior alert. The paper reports on how programme theories among change recipients emerge in relation to the established programme theory of the initiator. Methods A qualitative approach and a longitudinal research design were used. To develop programme theories among change recipients, individual semistructured interviews were conducted. Three sets of interviews were conducted in the period of 2011 to 2013, totalling 22 interviews. In addition, 4 participant observations were made. To develop the initiator's programme theory, an iterative multistage collaboration process between the researchers and the initiator was used. A directed content analysis was used to analyse data. Findings The initiator and change recipients described similar programme logics, but differing programme theories. With time, change recipients' programme theories emerged. Their programme theories converged and became more like the programme theory of the initiator. Conclusions This study has demonstrated the importance of making both the initiator's and change recipients' programme theories explicit. To learn about conditions for improvement initiatives, comparisons between their programme theories are valuable. Differences in programme theories provide information on how initiators can customize support for their improvement initiatives. Similar programme logics can be underpinned by different programme theories, which can be deceptive. Programme theories emerge over time and need to be understood as dynamic phenomena. [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]

Aim: The aim of the study was to describe different eHealth literacy domains among parents of children needing paediatric surgery in Sweden, and the correlation between these eHealth literacy domains and parents' socioeconomic factors and demographic characteristics. Design: Descriptive correlational design. Method: Thirty‐five Swedish‐speaking parents participated as a historical control group within an ongoing Swedish clinical trial developing eHealth solutions for families after hospital care; of these, 30 completed the eHealth Literacy Questionnaire and the socioeconomic and demographic questionnaire. Results: Of the seven eHealth literacy domains assessed, parents' strengths lay in those pertaining to their own digital competence, control and safety, while their weakness concerned their motivation to engage with digital services, and their ability to access eHealth platforms that work. Overall, parents presented adequate eHealth literacy. Of the five socioeconomic and demographic variables assessed (i.e. monthly wages, education levels, age, gender and residency), monthly wages correlated the strongest, and positively, with the seven eHealth literacy domains. [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]

Pain and fear associated with needle procedures have been found to be more common among children and adolescents treated for type 1 diabetes (T1D) than among others in their age group. Furthermore, high glycated haemoglobin (HbA1c) values are associated with needle‐related fear. Aim: To describe negative experiences of needle procedures in childhood diabetes treatment from children's and adolescents' own perspectives. Methods: Short written narratives (n = 83) and drawings (n = 2) from children and adolescents treated for T1D, aged 7–18 years, were subjected to inductive qualitative content analysis. Results: Negative experiences with needle procedures had many facets, such as pain and fear, changing over time and affecting everyday life. All kinds of needle procedures caused difficulties, but venipunctures were described as the worst. Conclusion: All needle procedures involved in diabetes treatment are potentially experienced as creating pain and fear, but the negative experiences are multifaceted and vary between individuals. These experiences create suffering for children and adolescents, and influence their daily lives. Besides finding techniques to decrease the number of needle procedures in the treatment, research should focus on implementing methods to decrease pain, fear, and other negative experiences as well as to promote self‐coping. This is urgent, since needle‐related fear has an impact on glycaemic control and therefore increases the risk of long‐term complications. Clinical Implications: When caring for children and adolescents with diabetes, their previous experiences with needle procedures need to be considered. [ABSTRACT FROM AUTHOR]

Background: Children with down syndrome (DS) are breastfed to a lesser extent than infants in general, despite research showing that it is possible for these children to breastfeed successfully. Aim: The aim was to describe how mothers of children with DS experienced breastfeeding and breastfeeding support from healthcare professionals. Method: A qualitative study with an inductive approach. Individual interviews were performed with seven mothers from southern Sweden. The interviews were analysed using qualitative content analysis. Result: The mothers felt that the support varied, as some healthcare professionals were supportive, while others had preconceptions regarding breastfeeding and DS. They also experienced that the guidelines could be an obstacle in the encounter with healthcare professionals thereby affecting the possibility to establish breastfeeding. Information and support were important to the mothers, and when insufficient, they turned to the internet for help. Conclusions: Mothers felt that healthcare professionals were bound to ward routines and guidelines, which could be contrary to their own and the family's wishes. They were also sensitive to the attitudes of healthcare professionals, which can affect their own state of mind. Healthcare professionals' preconceptions regarding breastfeeding and DS have not changed, despite research showing that infants with DS can breastfeed successfully. Increased awareness of the possibility to breastfeed an infant with DS is needed to provide better support to mothers. [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]

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]

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: Difficulty in communicating can lead to stressful situations both for foreign‐born female patients suffering from common mental disorders (CMDs) and for the health care professionals. Aim: The aim of the study was to explore how foreign‐born female patients with CMDs experienced their health care encounters and how they perceived a care manager could be a support during their illness, as well as to explore the care managers' perceptions and experiences concerning this group. Methods: A qualitative method with semi‐structured interview was chosen. The data were analysed with systematic text condensation. The study was conducted in primary care in western Sweden. Eight Persian‐speaking female patients were recruited by the snowball method and participated in the study. Furthermore, nine care managers participated. Results: Foreign‐born female patients felt shame and anxiety because of language difficulties, interpreter presence, mental illness, and feelings of dependency. The care managers and the patients felt that physical meetings, access to translated assessment scales and female telephone interpreters, and early and continuous contact and access to health care personnel with a similar cultural background could facilitate communication. Conclusion: In order to facilitate mutual understanding and knowledge, accessibility and continuity of health care are needed to enable foreign‐born female patients with CMD to support their own health development. Female interpreters, telephone interpreting, translated scales, and telephone contacts combined with face‐to‐face visits could facilitate communication. [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]

Aims and objectives: This study aims to provide insight into healthcare professionals' lived experiences of digital health competence with the objective of improving the knowledge of how digital health competence is perceived by healthcare professionals. Background: Healthcare professionals need to adjust to the digital era to provide quality and ethical care. Previous research has rarely adopted a healthcare professional's standpoint to describe their perceptions of digital health competence, even though their perspective in how new care practices are designed and implemented is vital. Design: A qualitative descriptive study. Methods: Healthcare professionals (nurses and allied health professionals) from versatile healthcare settings were recruited for individual semi‐structured interviews in Sweden (n = 5) and Finland (n = 15) (spring 2019‐summer 2020). Purposive and convenience sampling was used. Participants' backgrounds were in the public and private sectors. The interviews were transcribed for inductive content analysis. The SRQR guideline guided the study process. Results: Healthcare professionals' perceptions of digital health competence are connected to competence to provide patient‐centric care through digital channels, using technology and digital health systems, interacting with the patient through digital means, evaluating what digital health is and combining digital and traditional methods. Professionals' perceptions of their own digital health competence were divided, with the participants either reporting sufficient competence or perceiving a lack of skills in some specific areas. Conclusions: Healthcare professionals' perceptions of digital health competence focus on the ability to provide patient‐centric care by evaluating the need and possibilities for using digital health services jointly with more traditional methods. This study provides a sound basis for digital health research, but future studies should focus on elucidating factors which affect digital health competence and competence development. Relevance to clinical practice: The results of this study can guide healthcare practices and digital health implementation, as well as function as a basis for instrument or theory development. Health care and nursing leaders should enable the resources to hybrid practices in patient‐centric care provision. [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]

Background: In January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit. Objective: This study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work. Methods: This study has a descriptive cross‐sectional design. Data were collected using a study‐specific survey sent by e‐mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments). Results: The results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co‐ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved. Conclusion: Further research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient‐reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit. [ABSTRACT FROM AUTHOR]