Older women's perceptions of HPV self-sampling and HPV-sampling performed by a midwife - a phenomenographic study.

BACKGROUND: Cervical cancer is a global disease and it is well established that cervical cancer is caused by human papillomavirus (HPV). In Sweden self-sampling for HPV is now used as a complement to sampling performed by a midwife. However, there is a lack of knowledge on how older women perceive the self-sampling compared to the sampling performed by a midwife. Therefore, the aim of the study was to describe how women, aged 64 years and older, perceived the process of self-sampling and sampling performed by a midwife for HPV-testing. METHODS: Eighteen women were included in a qualitative interview study, and a phenomenographic approach was used for the analysis of the interviews. RESULTS: Three descriptive categories emerged: Confidence in sampling, Facilitating participation and Being informed. Within the categories, eight conceptions emerged describing the variation relating to how the women perceived the process of self-sampling and sampling performed by a midwife. CONCLUSIONS: Women in this study describe confidence in self-sampling for HPV-testing and that the self-sampling was saving time and money, both for themselves and for society. Information in relation to an HPV-positive test result is of importance and it must be kept in mind that women affected by HPV may feel guilt and shame, which health care professionals should pay attention to. This knowledge can be used in education of health care staff. TRIAL REGISTRATION: https://researchweb.org/is/fourol/project/228071 . Reg. no 228,071.

Did the organization of primary care practices during the COVID-19 pandemic influence quality and safety? - an international survey.

BACKGROUND: Changes in demographics with an older population, the illness panorama with increasing prevalence of non-communicable diseases, and the shift from hospital care to home-based care place demand on primary health care, which requires multiprofessional collaboration and team-based organization of work. The COVID-19 pandemic affected health care in various ways, such as heightened infection control measures, changing work practices, and increased workload. OBJECTIVES: This study aimed to investigate the association between primary care practices' organization, and quality and safety changes during the COVID-19 pandemic. DESIGN: Data were collected from 38 countries in a large online survey, the PRICOV-19 study. For this paper, the participating practices were categorized as "Only GPs", comprising practices with solely general practitioners (GPs) and/or GP trainees, without any other health care professionals (n = 1,544), and "Multiprofessional," comprising practices with at least one GP or GP trainee and one or more other health professionals (n = 3,936). RESULTS: Both categories of practices improved in infection control routines when compared before and during the COVID-19 pandemic. A larger proportion of the multiprofessional practices changed their routines to protect vulnerable patients. Telephone triage was used in more "Multiprofessional" practices, whereas "Only GPs" were more likely to perform video consultations as an alternative to physical visits. Both types of practices reported that the time to review new guidelines and scientific literature decreased during the pandemic. However, both had more meetings to discuss directives than before the pandemic. CONCLUSIONS: Multiprofessional teams were keener to introduce changes to the care organization to protect vulnerable patients. However, practices with only GPs were found to be more aligned with video consultations, perhaps reflecting the close patient-doctor relationship. In contrast, telephone triage was used more in multiprofessional teams.

Comparing didactic approaches for practical skills learning in Scandinavian nursing simulation centres: A qualitative comparative study.

AIM: To explore and compare the didactic approaches to practical skills learning at simulation centres in Scandinavian universities and university colleges. BACKGROUND: Academic simulation centres are an important arena for learning practical nursing skills which are essential to ensure competent performance regarding patient safety and quality of care. Knowledge of didactic approaches to enhance learning is essential in promoting the provision and retention of students' practical nursing skills. However, research on didactical approaches to practical nursing skills learning is lacking. DESIGN: A qualitative comparative design was used. METHODS: During November and December 2019, interviews were conducted with a total of 37 simulation centre directors or assistant directors, each of whom possessed in-depth knowledge of practical skills in teaching and learning. They represented bachelor nursing education in Denmark, Norway and Sweden. A qualitative deductive content analysis was conducted. RESULTS: The results revealed all five predetermined didactical components derived from the didactical relationship model. Twenty-two corresponding categories that described a variation in didactic approaches to practical skills learning in Scandinavian nursing simulation centres were identified. The didactical components of Learning process revealed mostly similarities, Setting mostly differences and Assessment showed only differences in didactic approaches. CONCLUSION: Although various didactic approaches were described across the countries, no common approach was found. Nursing educational institutions are encouraged to cooperate in developing a shared understanding of how didactic approaches can enhance practical skills learning. IMPLICATIONS FOR PROFESSION AND/OR PATIENT CARE: Cross-country comparisons of practical nursing skills learning in Scandinavian countries highlight the importance of educator awareness concerning the impact diverse didactic approaches may have on competent performance in nursing education. Competent performance is pivotal for ensuring patient safety and the provision of high-quality care. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution. REPORTING METHOD: This study followed the Consolidated Criteria for Reporting Qualitative Research reporting guidelines.

Nurse anaesthetists' experiences of student nurse anaesthetist learning during clinical practice: a qualitative interview study.

BACKGROUND: The professional role of a nurse anaesthetist involves taking a pedagogical approach towards students, including supervision during clinical practice. Although supervisors are facilitators of student learning, they are offered little training in adult learning principles. The aim of this study was to describe supervisors' experience of student nurse anaesthetist learning during clinical practice in the operating room. METHOD: In this qualitative interview study, 12 semi-structured individual interviews were carried out with clinical supervising nurse anaesthetists. The data were analysed inductively using thematic analysis. RESULTS: The results are illustrated with one theme and five sub-themes. The clinical learning situation of student nurse anaesthetists is described as a reflection of different cultures coming together. The operating room environment is a new context to students, and students enter with different clinical background and experiences. There is tension in facilitating student learning due to demands for productivity; supervisors suggest the use of separate operating rooms with a special focus on learning in the future. CONCLUSION: Clinical practice facilitates student learning and is a parallel process to routine care. Thus, it requires the cultures of higher education and healthcare organizations to co-exist. This is illustrated with the theme "Contributing to students' future professional roles by bridging the hospital and university cultures". In the operating room, student learning is challenged by a new context and time pressure as shown by subthemes. To overcome challenges and support student learning in the operating room from a supervisors' perspective, interprofessional student teams are suggested as a future approach and need to be further investigated.

Student Nurse Anesthetists' and Supervisors' Perspectives of Learning in the Operating Room: An Integrative Review.

PURPOSE: The purpose of this review was to identify supporting and hindering factors for student nurse anesthetists' (SNAs') learning in the operating room during clinical practice, from students' and supervisors' perspectives. DESIGN: An integrative review. METHODS: Systematic searches were conducted in Medline, Cinahl, PsycInfo, and ERIC. Search terms were related to nurse anesthetist, education, operating room context, and clinical setting. Searches were performed at three points in time and in total 1,530 unique articles were identified. After screening using Covidence and using Joanna Briggs Institute appraisal tools, 34 articles remained. These were analyzed inductively using a constant comparison method. FINDINGS: Supporting factors include preparation before clinical practice, clearly stated expectations, a respectful relationship with the supervisor, daily planning and communication, and constructive feedback. Hindering factors include lack of time, disruptive behavior from supervisors or other team members, and environmental factors such as a high room temperature and noisy environment. CONCLUSIONS: SNAs' learning situation in the operating room resembles undergraduate nurses' learning during clinical practice. Educators and supervisors can take several actions to promote SNAs' learning. Further research is warranted on the effect of teamwork on SNAs' learning.

Experiences of human papillomavirus self-sampling by women >60 years old: A qualitative study.

BACKGROUND: Human papillomavirus (HPV) self-sampling has shown to be acceptable and feasible across cultures and effective in reaching women who do not participate in regular cervical cancer screening. However, most of these studies have included younger women. There is a lack of knowledge of how older women reason about HPV self-sampling. OBJECTIVE: The aim of this study was to describe how women (>60 years old) experience the offering of self-sampling of HPV, compared to having a sample collected by a healthcare professional. DESIGN AND PARTICIPANTS: The study had a qualitative explorative design. Four focus group discussions were conducted with women 60-69 years old (n = 22). Data were analysed using principles of interpretive description. RESULTS: Five themes were identified: self-sampling-convenient and without pain, lack of knowledge, worries related to HPV self-sampling, need for information and taking a societal perspective. CONCLUSION: Women aged >60 years found that HPV self-sampling was convenient and easy to perform. Further, they stressed the importance of being able to remain in the screening programme in advanced age and that self-sampling could be a possible solution. This study also revealed a lack of knowledge among women in this age group regarding HPV infection, how the disease is transmitted and its relation to cervical cancer. PUBLIC CONTRIBUTION: Women who had performed HPV self-sampling participated in the focus group discussion.

Grasping a new approach to older persons' dignity: A process evaluation of the Swedish Dignity Care Intervention in municipal palliative care.

AIM: Dignity in older persons is a goal of palliative care. This study aimed to perform a process evaluation of the Swedish Dignity Care Intervention (DCI-SWE) in municipal palliative care in Sweden, focusing on implementation, context, and mechanism of impact. METHODS: This study had a process evaluation design. The Knowledge to Action framework supported the implementation of the DCI-SWE. The intervention was used by community nurses with older persons (n = 18) in home healthcare and nursing homes. Data were collected by focus groups- and individual interviews with community nurses (n = 11), health care professionals (n = 5) and managers (n = 5), reflective diaries, and field notes. RESULTS: Grasping the DCI-SWE was challenging for some community nurses. Enhanced communication training and increased engagement from managers were requested. However, the DCI-SWE was perceived to enhance professional pride in nursing. In terms of fidelity, dose and reach the project was not fully achieved. Regarding mechanism of impact the DCI-SWE contributes to address older persons' loneliness and existential life issues, as it put conversations with older persons on community nurses' agenda. CONCLUSIONS: The DCI-SWE provided opportunities to maintain older persons' dignity and quality of life. However, with refinements of design and the DCI-SWE, the sustainability in the context may increase.

Defining palliative wound care: A scoping review by European Association for Palliative Care wound care taskforce.

BACKGROUND: Deciding whether to transition to wound palliation is challenging for health care professionals because there is no agreed definition or understanding of palliative wound care, including the goals, core elements and differences from general wound management. OBJECTIVES: To conduct a scoping review with qualitative synthesis to define palliative wound care in terms of its conceptual framework, goals, principles, components, and differences from general wound management, and provide a new definition of palliative wound care based on this scoping review. ELIGIBILITY CRITERIA: Published literature that refers to the definitions, concept, goals and core elements of palliative wound care using any methodological approach, without any time limits, published in English. SOURCES OF EVIDENCE: The searches were conducted in CINAHL Complete via Ebsco, Medline via Ovid, Cochrane Library, Scopus, and Google Scholar. CHARTING METHODS: A data extraction form was developed by the review team and used independently for data charting purposes. Braun and Clarke's six phases of thematic analysis guided the qualitative synthesis. RESULTS: A total of 133 publications met the inclusion criteria. Three main themes were developed to define palliative wound care and understand its differences from general wound management: 1- Healing potential of wounds and patient vulnerability, 2- Understanding the impact on individuals and family to address needs, 3- Towards new goals and perspectives in approach to care. CONCLUSIONS: Palliative wound care focuses on symptom management, comfort, and dignity, but does not always target the healing of the wound, which is the goal of general wound care. The needs of the individual and their family must be addressed by clinicians through the provision of care and support that takes into account the true meaning of living and dying with a palliative wound. PROTOCOL REGISTRATION: A review protocol was developed but not registered.

Valuing the individual - evaluating the Dignity Care Intervention.

BACKGROUND: Palliative care needs in older persons can endanger their dignity. To provide dignity-conserving care to older persons, the Swedish Dignity Care Intervention (DCI-SWE) can be used. The DCI-SWE is built on Chochinov's dignity model and the original version, developed and tested in UK and Scotland. AIM: To describe older persons' and their relatives' experiences of dignity and dignity-conserving care when using the DCI-SWE in municipal health care. RESEARCH DESIGN: A mixed method study with convergent parallel design. PARTICIPANTS AND RESEARCH CONTEXT: The DCI-SWE was used and evaluated in a Swedish municipality health care context. Older persons' (n=17) dignity-related distress and quality of life were assessed after the intervention. Interviews with older persons (n=10) and their relatives (n=8) were analysed using thematic analysis. ETHICAL CONSIDERATIONS: The study followed the World Medical Association Declaration of Helsinki. Ethical approval was obtained from the Regional Ethical Review Board in Uppsala, Sweden (Reg No. 2014/312) and the National Swedish Ethical Review Authority (Reg. No. Ö 10-2019). Informed consent was collected from older persons and their relatives. FINDINGS: The older persons' dignity-related distress did not significantly change over time (p = 0.44) neither was their overall quality of life (p = .64). Only psychological quality of life was decreased significantly (p = 0.01). The older persons and their relatives emphasized the importance of valuing the individual. CONCLUSIONS: The DCI-SWE provides a forum to talk about dignity issues, but relevant competence, continuity and resources are needed. Psychological care actions and health care professionals' communication skills training are important. To fully evaluate, the DCI-SWE a larger sample and validated instruments are necessary.

Parents' reasoning about HPV vaccination in Sweden.

INTRODUCTION: The aim of this study was to describe parents' reasoning in making decisions about vaccinating their daughters against human papilloma virus (HPV), a part of the Swedish vaccination programme. METHOD: Twenty parents whose daughter had been offered HPV vaccination participated. Semi-structured individual interviews were conducted and analysed using thematic analysis. RESULTS: The findings reveal that the decision-making process is complex. The parents trusted the vaccination programme and saw it as beneficial to society. They also described using different resources to decide about HPV vaccination, but they did not include their daughters in making the decision. DISCUSSION: Parents need better vaccine and health literacy to be able to decide, based on evidence and in consultation with their daughters, on HPV vaccination. School nurses can play an important role in evidence-based decision-making about HPV vaccination and introducing children to this health-promoting intervention.

Promoting and Maintaining Skin Integrity in End-of-Life Care: A Systematic Review.

OBJECTIVE: To systematically review recommendations for promoting and maintaining skin integrity in end-of-life care and their level of evidence. DATA SOURCES: MEDLINE (PubMed interface), CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE, and The Cochrane Library were systematically searched using a combination of key terms including end-of-life care , skin care , skin hygiene , and skin cleansing . STUDY SELECTION: Articles were included if they (1) described skin care recommendations, including but not limited to the use of skin care products and interventions such as cleansing procedures; and (2) included adult patients who were expected to die within 12 months. There were no restrictions on study design, study setting, or language. Articles with a publication date before 2000 were excluded. DATA EXTRACTION: Two data extraction forms were developed. The first included information about the author, publication year, type of evidence, study topic, sample, sample size, setting, limitations of the study, level of evidence, and quality of the study. The second included recommendations for promoting and maintaining skin integrity in patients at the end of life. DATA SYNTHESIS: Because of methodological heterogeneity, results were synthesized narratively, and no meta-analysis was performed. CONCLUSIONS: The information contained in the recommendations will assist nurses in promoting and maintaining skin integrity in patients at the end of life. More research is needed on end-of-life skin care, with an emphasis on patient-centered, holistic strategies that improve patient well-being and quality of life. In most current research, recommendations are limited to literature reviews and level V evidence. Skin care must balance the promotion and maintenance of skin integrity, wound prevention, and management while promoting patient dignity and quality of life.

Balancing Between Being Proactive and Neutral: School Nurses' Experiences of Offering Human Papilloma Virus Vaccination to Girls.

The aim of this study was to describe the experiences of Swedish school nurses when they offered the human papilloma virus (HPV) vaccination to girls aged 10-12 years. Four focus groups with a total of 17 school nurses were conducted and analyzed using inductive content analysis. The results showed that the school nurses were balancing between keeping a neutral role and the need to increase the uptake of the HPV vaccination. They described the consent forms and information that they gave the girls and their parents to help them make an informed decision about the vaccination. There were also ethical and moral dilemmas that arose with regard to the HPV vaccinations. Our findings demonstrate the need to provide school nurses with clear guidelines and support, so they can play an active role in interacting with the girls and their parents when they offer the HPV vaccination.

An appealing meal: Creating conditions for older persons' mealtimes - a focus group study with healthcare professionals.

BACKGROUND: Healthcare professionals' knowledge and attitudes may have an impact on older persons' nutritional status. Therefore, it is important to explore different healthcare professionals' perspectives on older persons' meals. AIM: The aim of this study was to describe healthcare professionals' understanding of and views on the mealtime experience of older persons in municipal care. METHODS: Seven focus group discussions with various healthcare professionals (nurse assistants, registered nurses and occupational therapists) (n = 52) working in nursing homes and/or home care for older persons were conducted and analysed using interpretive description. The COREQ checklist was used for reporting the findings. RESULTS: The results revealed a striving to create conditions for an appealing meal, regardless of profession. This overall theme, 'An appealing meal - creating conditions for older persons' mealtimes', consisted of four sub-themes: 'Food is crucial', 'The mealtime as a social interaction', 'Identifying the individual older person's needs' and 'Integrating different perspectives of meal-related situations among the team'. CONCLUSION: The findings show that the different professionals strive to prioritise meals in the everyday care of older persons, but at same time there is a lack of a common view on how to prioritise meal-related issues. This indicates that the care may be fragmented, being based on each professional's duties and interpretation of responsibility for older persons' meals, rather than constituting comprehensive integrated person-centred care provided by a multidisciplinary team. RELEVANCE TO CLINICAL PRACTICE: To enhance older persons' mealtimes, we need to map how mealtimes are valued and implemented in clinical practice and approached in healthcare professionals' education. Education on older person's nutritional needs should be team-based, and not focus on the perspective of a single profession.

An app for supporting older people receiving home care - usage, aspects of health and health literacy: a quasi-experimental study.

BACKGROUND: During the last decade, there has been an increase in studies describing use of mHealth, using smartphones with apps, in the healthcare system by a variety of populations. Despite this, few interventions including apps are targeting older people receiving home care. Developing mobile technology to its full potential of being interactive in real time remains a challenge. The current study is part of a larger project for identifying and managing health concerns via an app by using real-time data. The aim of the study was to describe older people's usage of an app and to evaluate the impact of usage on aspects of health and health literacy over time. METHODS: A quasi-experimental design was employed. Seventeen older people self-reported health concerns via Interaktor twice a week for 3-months and answered questionnaires at baseline, the end of the intervention and at a 6-month follow-up. Logged data on app usage and data on Sense of Coherence, Health Index, Nutrition Form for the Elderly, Geriatric Depression Scale-20, Swedish Communicative and Critical Health Literacy and Swedish Functional Health Literacy were collected and analysed using descriptive and non-parametric inferential statistics. RESULTS: The median usage of the app as intended was 96%. Pain was one of the most reported health concerns and was also the health concern that triggered an alert (n = 33). The older people's communicative and critical health literacy improved significantly over time. Regarding the scores of Sense of Coherence, Health Index, Nutritional Form for the Elderly, Geriatric Depression Scale-20 and Swedish Functional Health Literacy scale, there were no significant differences over time. CONCLUSIONS: The high app usage showed that an app may be a suitable tool for some older people living alone and receiving home care. The results indicate that the usage of Interaktor can support older people by significantly improving their communicative and critical health literacy. Aspects of health were not shown to be affected by the usage of the app. Further research with larger sample is needed for evaluation the effect on health literacy, and which aspects of health of importance to support by an app.

Self-care ability and sense of security among older persons when using an app as a tool for support.

THE STUDY'S RATIONALE: The need for home care among older persons is increasing, and mHealth is evolving to help meet the challenge. When developing an app to help maintain their health, it is essential to incorporate older persons' preferences. AIMS AND OBJECTIVES: To describe and evaluate the experiences of self-care support and sense of security among older persons using an interactive app to report health concerns. METHODOLOGICAL DESIGN AND JUSTIFICATION: The study had a descriptive and evaluative design. Qualitative and quantitative methods were applied to achieve a broader understanding. ETHICAL ISSUES AND APPROVAL: Ethical approval was obtained from the Regional Ethical Review Board. The older persons received verbal and oral information about the study and gave written informed consent. RESEARCH METHODS: Questionnaires (n = 17 older persons) answered at baseline, end of the intervention and at a 6-month follow-up were analysed with statistical analysis. Interviews (n = 17 older persons) conducted at the end of the intervention were analysed using a qualitative directed approach. MEASUREMENTS AND INTERVENTION: The questionnaire included the Appraisal of Self-care Agency Scale and a question concerning sense of security. For 3 months, the older persons used an app for regular reporting of health concerns. The app included self-care advice, graphs and a risk assessment model that generated alerts directly to the nurses. RESULTS: The older persons described how self-care and sense of security increased at the end of intervention, but statistically, it was shown to decrease afterwards. STUDY LIMITATIONS: The small sample size for statistical analysis. CONCLUSIONS: This study shows that an app can be a complementary tool to conventional home care that can increase older persons' sense of security and self-care ability. The results mirror the older persons' awareness that the support they received with the app was only temporary. Larger studies are needed for generalisation.

Self-assessed competence and need for further training among registered nurses in somatic hospital wards in Sweden: a cross-sectional survey.

BACKGROUND: Professional competence and continuous professional development is essential for ensuring high quality and safe nursing care, and it might be important for motivating nurses to stay in the profession. Thus, there is a need to identify the developmental process of nursing competency. Assessment of competence and need for further training helps to identify areas for quality improvement, and to design interventions in order to facilitate continuous competence development in different work contexts. The current study aimed to 1) describe registered nurses' self-assessment of clinical competence as well as the need for further training, and 2) explore possible differences between registered nurses with varying lengths of professional experience as a nurse (≤ 0,5 year, > 0,5-5 years, and ≥ 6 years). METHODS: A cross-sectional survey design was applied, using the Professional Nurse Self-Assessment Scale of clinical core competencies II. Registered nurses (n = 266) working in medical and surgical contexts in hospitals in Sweden responded (response rate 51%). Independent student t-test and analysis of variance were carried out. RESULTS: Registered nurses assessed their competence highest in statements related to cooperation with other health professionals; taking full responsibility for own activities; and acting ethically when caring for patients. They assessed their need for further training most for statements related to assessing patients' health needs by telephone; giving health promotion advice and recommendations to patients by telephone; as well as improving a creative learning environment for staff at the workplace. For self-assessed competence and need for further training, differences between the groups for 35 and 46 items respectively, out of 50 were statistically significant. CONCLUSIONS: Although the registered nurses assessed their competence high for important competence components expected of professionals such as cooperation with other healthcare professionals, it is problematic that knowledge of interactions and side-effects of different types of medication were reported as having the highest need of training. Longitudinal follow up of newly graduated nurses regarding their continuous development of competence as well as further training is needed.

Dignity-conserving care for persons with palliative care needs - identifying outcomes studied in research: An integrative review.

OBJECTIVES: With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized. METHODS: An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis. RESULTS: Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of "Performance, symptoms and emotional concerns" and "End-of-life and existential aspects". Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as "Dignity-related distress" and "Quality of life" were common. However, the results lacked concrete communication outcomes. SIGNIFICANCE OF RESULTS: The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Fifty years' follow-up of childhood epilepsy: Medical outcome, morbidity, and medication.

OBJECTIVE: To describe the long-term prognosis of childhood epilepsy, with special emphasis on seizure remission, relapse, medication, associated neurologic impairment, mortality rate, and cause of death. METHODS: A prospective longitudinal study on a population-based total cohort of 195 children with epileptic seizures in 1962-1964. Data were collected from medical records and a questionnaire. RESULTS: Follow-up data from 94% of the initial cohort showed the best long-term prognosis for seizure freedom for children with no intellectual or neurologic impairment. These children had later seizure onset, shorter total duration of epilepsy, and were more often medication free. Only a few of them had isolated relapses. Generalized, rather than focal, epilepsy was associated with fewer relapses and less ongoing medication. The "true incidence" group, with onsets during the inclusion period of 1962-1964, had the best long-term prognosis for seizure freedom, with 90% seizure-free after 50 years. Although only 10% of this group had ongoing seizures at follow-up, 22% still used anticonvulsive medication, often with old drugs, that is, phenobarbital or phenytoin, as one of the anticonvulsive drugs. The standardized mortality ratio (SMR) was 2.61 for the whole group, with no difference between those with or without other neurodeficits. Those who died young either had neurologic impairment or died from epilepsy-related conditions; later deaths often followed non-epilepsy-related conditions. No one in the incidence group died of SUDEP (sudden unexpected death in epilepsy). SIGNIFICANCE: This 50-year, long-term follow-up of a cohort of persons with childhood epilepsy in general demonstrates a better outcome for seizure freedom compared to our follow-up after 12 years and to previous reports. We also report a low incidence of seizure relapses. Remission of seizures does not automatically lead to termination of medication. The mortality rate associated with SUDEP was lower than previously reported.

Fifty-year follow-up of childhood epilepsy - Social, psychometric, and occupational outcome.

OBJECTIVE: The objective of this study was to explore and describe the experience of a childhood diagnosis of epilepsy and its consequences for the experiences of daily life over a span of 50 years. METHODS: A descriptive mixed method design was chosen. Data were collected through a survey returned by 86 persons (59% response rate) who had received diagnoses of epilepsy as children. The survey contained questions about education, vocation, family status, and included the 14-item Hospital Anxiety and Depression Scale (HAD). Additionally, interviews (n = 11) were conducted and analyzed by interpretative description. RESULTS: Few persons reported that the childhood diagnosis of epilepsy had affected their choice of education, work, or leisure activities. However, 20% reported that the diagnosis had caused problems in school or at work and had restricted their activities of daily living. Sixty-six percent of the participants were married, and 68% had children; of those, 12 (20%) reported that one or more of the children had also had seizures. Almost all reported no anxiety (82%) and no depression (90%). The results of the interviews revealed a balancing act between 'Controlling and managing the situation' and 'Not being restricted by the condition'. SIGNIFICANCE: This long-term follow-up over a 50-year life-span of persons who received childhood diagnoses of epilepsy suggests that the consequences for education, work, and leisure activities were few. Most of the participants had developed strategies to manage their situation.

Enabling activity in palliative care: focus groups among occupational therapists.

BACKGROUND: Activity participation may support clients in palliative care to maintain dignity and quality of life. Literature and policy documents state that occupational therapists should be part of the team in palliative care but provide limited guidance on how interventions should be employed. Thus, the aim was to describe occupational therapists' experiences of enabling activity for seriously ill and dying clients. METHODS: In a descriptive, qualitative study, three focus groups with occupational therapists (n = 14) were conducted. The data were analysed using qualitative content analysis. RESULTS: The findings showed that occupational therapists enabled activity in clients in palliative care while considering the client's individual preferences. Motivation was seen to facilitate activity, while environmental restrictions were thought to act as barriers. The occupational therapists wanted to bring activities physically closer to the clients and felt a need for more client contact to enable activity. CONCLUSIONS: Occupational therapists' interventions in palliative care include prioritizing and planning activities according to clients' preferences and capacities. The individual nature of these activities makes it impossible to create standardized protocol for interventions, but the study results can be used to describe occupational therapists' strategies and to guide their work, especially for occupational therapists without experience in palliative care.