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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]

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]

Background: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF‐CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. Methods: A comprehensive set of ICF‐CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF‐CY codes. Results: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." Conclusion: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF‐CY could be used to guide the delivery of care towards living an everyday life with a long‐term illness. [ABSTRACT FROM AUTHOR]

Background: Patients with acute coronary occlusion (ACO) may not only have ischemia-related ST-segment changes but also changes in the QRS complex. It has recently been shown in dogs that a greater ischemic QRS prolongation (IQP) during ACO is related to lower collateral flow. This suggests that greater IQP could indicate more severe ischemia and thereby more rapid infarct development. Therefore, the purpose was to evaluate the relationship between IQP and measures of myocardial injury in patients presenting with acute ST-elevation myocardial infarction (STEMI).Methods: Seventy-seven patients with first-time STEMI were retrospectively included from the recently published SOCCER trial. All patients underwent a cardiac magnetic resonance (CMR) examination 2-6 days after the acute event. Infarct size (IS), myocardium at risk (MaR), and myocardial salvage index (MSI) were assessed and related to IQP. IQP measures assessed were; computer-generated QRS duration, QRS duration at maximum ST deviation, absolute IQP and relative IQP, all derived from a pre-PCI, 12-lead ECG.Results: Median absolute IQP was 10 ms (range 0-115 ms). There were no statistically significant correlations between measures of IQP and any of the CMR measures of myocardial injury (absolute IQP vs IS, r = 0.03, p = 0.80; MaR, r = -0.01, p = 0.89; MSI, r = -0.05, p = 0.68).Conclusions: Unlike previous experimental studies, the IQP was limited in patients presenting at the emergency room with first-time STEMI and no correlation was found between IQP and CMR variables of myocardial injury in these patients. Therefore, IQP does not seem to be a suitable biomarker for triaging patients in this clinical context. [ABSTRACT FROM AUTHOR]

Background To empower patients and improve the quality of care, policy-makers increasingly adopt systems to enhance person-centred care. Although models of person-centredness and patient-centredness vary, respecting the needs and preferences of individuals receiving care is paramount. In Sweden, as in other countries, healthcare providers seek to improve person-centred principles and address gaps in practice. Consequently, researchers at the University of Gothenburg Centre for Person-Centred Care are currently delivering person-centred interventions employing a framework that incorporates three routines. These include eliciting the patient's narrative, agreeing a partnership with shared goals between patient and professional, and safeguarding this through documentation. Aim To explore the barriers and facilitators to the delivery of person-centred care interventions, in different contexts. Method Qualitative interviews were conducted with a purposeful sample of 18 researchers from seven research studies across contrasting healthcare settings. Interviews were transcribed, translated and thematically analysed, adopting some basic features of grounded theory. Ethical issues The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Swedish Research Council. Results Barriers to the implementation of person-centred care covered three themes: traditional practices and structures; sceptical, stereotypical attitudes from professionals; and factors related to the development of person-centred interventions. Facilitators included organisational factors, leadership and training and an enabling attitude and approach by professionals. Trained project managers, patients taking an active role in research and adaptive strategies by researchers all helped person-centred care delivery. Conclusion At the University of Gothenburg, a model of person-centred care is being initiated and integrated into practice through research. Knowledgeable, well-trained professionals facilitate the routines of narrative elicitation and partnership. Strong leadership and adaptive strategies are important for overcoming existing practices, routines and methods of documentation. This study provides guidance for practitioners when delivering and adapting person-centred care in different contexts. [ABSTRACT FROM AUTHOR]

Background The Swedish healthcare system employs information and communication technologies (ICT) in nursing practice to meet quality-, security- and efficiency-related demands. Although ICT is integrated with nursing practices, nurses do not always feel that they are convenient to use it. We need to improve our knowledge of the role of ICT in healthcare environments and so we decided to complement existing experience of how ICT influences nursing practice. Aim This study aimed to review and synthesise the available literature on the role of ICT in nursing practice in Swedish healthcare settings. Method To consolidate previous studies based on diverse methodologies, an integrative literature review was carried out. Three databases were used to search for literature, 20 articles met the inclusion criteria. Results The literature review indicates that ICT integration into nursing practice is a complex process that impacts nurses' communication and relationships in patient care, working conditions, and professional identities and development. Nurses are found to express ambiguous views on ICT as a usable service in their everyday practice since it impacts both positively and negatively. Discussion and conclusion Although ICT cannot replace physical presence, it can be considered a complementary service that gives rise to improved patient care. However, nonverbal communication cues may be missed when ICT is used as mediating tool and ICT can be limiting because it is not always designed to meet nurse and patient needs. The meaning of an encounter appears to change when ICT is used in nursing practice, not only for patient relationships but also for interpersonal communication. [ABSTRACT FROM AUTHOR]

Background Spousal concordance on risk factors and lifestyle habits exists and can partly be explained by patients' and spouses' health beliefs and underuse of cardiac rehabilitation. However, there have been very few qualitative comparisons of health beliefs between patients and spouses after a cardiac event. Aim To examine and qualitatively compare the health beliefs of patients with coronary heart disease and their spouses about lifestyle habits, 1 year after the cardiac event. Design Explorative and descriptive. Method Semi-structured focus group interviews were conducted with patients (n = 14) 1 year after a cardiac event, as well as individual interviews with spouses (n = 8). The transcriptions underwent a deductive qualitative content analysis, within the framework of the Health Belief Model. Findings Patients' and spouses' health beliefs about lifestyle habits qualitatively differed in most predetermined main analytical categories of the Health Belief Model. The patients relied more on their own capacity and the healthcare system than on collaboration with their spouses who instead emphasised the importance of mutual activities to establish lifestyle habits. The spouses therefore experienced problems with different family preferences compared to the patients' wishes. Moreover, only patients believed supervised exercise was beneficial for risk reduction of coronary heart disease and they related barriers for medication to a self-healing body and a meaningless life without relatives and old habits. Patients and spouses agreed that despite the severity of illness, life was captured and that normalisation to a life as usual was possible. Conclusion The patients' and spouses' qualitatively different health beliefs regarding health-related behaviours imply a new approach. Nurses and associated professionals need to follow-up patients' and spouses' in primary health care to support them in a tailored way, for example in problem-based sessions. Recognition and understanding of their different views and otherness could lead to compromises and goals to work with. [ABSTRACT FROM AUTHOR]

The Swedish welfare debate increasingly focuses on market liberal notions and its healthcare perspective aims for more patient-centered care. This article examines the new Swedish Patient Act describing and analyzing how the patient is constructed in government documents. This study takes a Foucauldian discourse analysis approach following Willig's analysis guide. The act contains an entitlement discourse for patients and a requirement discourse for healthcare personnel. These two discourses are governed by a values-based healthcare discourse. Neo-liberal ideology, in the form of New Public Management discourse, focusing on the value of efficiency and competition, is given a hegemonic position as laws and regulations are used to strengthen it. The new Swedish Patient Act seems to further strengthen this development. The Act underlines the increased entitlement for patients, but it is not legally binding as it offers patients only indirect entitlement to influence and control their care. To safeguard the patient's entitlement under the Patient Act, healthcare personnel should be made aware of the contents of the Act, so that they can contribute to the creation of systems and working methods that facilitate respect of the Act's provisions in daily healthcare work. [ABSTRACT FROM AUTHOR]

Aims: To analyse mothers' self-assessed quality of interaction with their children and their opinions about child difficulty with respect to socio-economic status and subjective factors: postnatal depression, social isolation, sense of coherence and locus of control.Methods and Material: A comprehensive questionnaire was completed by 1039 mothers of 18-mo-old children participating in the baseline measurements of a Swedish multicentre study developing and testing a new psychosocial model for the child health services.Results: All subjective factors, including the number of factors, showed significant associations with perceived interaction and difficultness. Effect sizes of subjective factors ranged from about 0.3 to 1 SD for interaction, and from about 0.2 to 0.8 SD for difficultness. As for difficultness, effect sizes were larger for boys. There were no associations between high socio-economic status and high-quality interaction or low child difficultness: the few significant differences in fact favoured low-status children.Conclusion: The results provided some contradictory findings to the well-known association between high socio-economic status and favourable outcome. This result is of practical relevance for interventions: supportive programmes cannot be limited to areas and families of low socio-economic status. Positive effects may ensue if subjective factors like those studied here can be promoted among parents and children through the child health services. [ABSTRACT FROM AUTHOR]