Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review.

AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review and metasynthesis. METHODS: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. DATA SOURCES: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options. RESULTS: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. CONCLUSION: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. IMPACT: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. REPORTING METHOD: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. PATIENT OR PUBLIC CONTRIBUTION: No patient or Public Contribution.

Facilitating planned home death: A qualitative study on home care nurses' experiences of enablers and barriers.

AIM: The aim of this study was to explore home care nurses' experience of enablers and barriers for planned home death in municipal health care. DESIGN: A focused ethnography. METHODS: This qualitative study collected data from 20 semi-structured interviews of home care nurses and 8.5 h of participant observations. Data was analyzed using thematic analysis. RESULTS: The findings in our study show that home care nurses consider supportive cultures, a commitment to safety and continuity when facilitating planned home deaths and family rotations to be enablers for planned home deaths. Barriers to planned home deaths involve a lack of palliative experience affecting confidence, shortages of nurses and medical supplies and night shift challenges. CONCLUSION: This study underscores the need for supportive organizational cultures, ongoing education and improved communication and staffing policies to enhance the quality of care and the experiences of patients and home care nurses, especially in the context of planned home deaths. IMPACT: The study adds knowledge to the evidence base of the practice of facilitating planned home deaths. The findings of the study could offer valuable insights for shaping future policies or devising effective implementation strategies. REPORTING METHOD: Adherence to the COREQ guidelines for reporting qualitative research was maintained. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Identified enablers and barriers provide a new perspective, contributing to a comprehensive understanding of planning home deaths. The study emphasizes supportive cultures, safety commitment and family rotations as crucial for planned home deaths, guiding healthcare professionals to adopt best practices and enhance palliative care quality.

Time and change: a typology for presenting research findings in qualitative longitudinal research.

BACKGROUND: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings. METHODS: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis. RESULTS: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings. CONCLUSIONS: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.

Home care nurses facilitating planned home deaths. A focused ethnography.

BACKGROUND: Home care nurses provide complex palliative care for patients who want to die in their own homes. This study aimed to explore home care nurses' facilitation of planned home death to better understand nursing practices. METHODS: Data were collected between March 2019 and March 2020 using participant observations and semi-structured interviews. In addition, the number of planned home deaths was recorded. The analysis was guided by Roper and Shapira`s framework on focused ethnography. RESULTS: Twenty home care nurses (three men) in eight home care areas in two Norwegian municipalities met the inclusion criteria. Eight home deaths were registered, seven participatory observations were performed, and 20 semi-structured interviews were completed. Home care nurses find facilitating planned home deaths to be rewarding work, to the point of going above and beyond. At the same time, they describe facilitating planned home deaths as demanding work due to organizational stressors such as staff shortages, heavy workloads, and time restraints. While they tend to patients' needs, they also express concern for the wellbeing of the next of kin. They find it challenging to juggle the needs of the patients with the needs of next of kin, as these are not always correlated. CONCLUSION: Home care nurses are pushing the boundaries of their practice when facilitating planned home deaths while compensating for a fragile system by going above and beyond for patients and their next of kin. Providing insights into the work of home care nurses providing palliative care in patients' homes can impact recruiting and retaining nurses in the workforce and influence local practices and policies.

Qualitative longitudinal research in health research: a method study.

BACKGROUND: Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and variations within this approach. The aim of this study was to map how QLR articles within the existing health research literature are designed to capture aspects of time and/or change. METHODS: This method study used an adapted scoping review design. Articles were eligible if they were written in English, published between 2017 and 2019, and reported results from qualitative data collected at different time points/time waves with the same sample or in the same setting. Articles were identified using EBSCOhost. Two independent reviewers performed the screening, selection and charting. RESULTS: A total of 299 articles were included. There was great variation among the articles in the use of methodological traditions, type of data, length of data collection, and components of longitudinal data collection. However, the majority of articles represented large studies and were based on individual interview data. Approximately half of the articles self-identified as QLR studies or as following a QLR design, although slightly less than 20% of them included QLR method literature in their method sections. CONCLUSIONS: QLR is often used in large complex studies. Some articles were thoroughly designed to capture time/change throughout the methodology, aim and data collection, while other articles included few elements of QLR. Longitudinal data collection includes several components, such as what entities are followed across time, the tempo of data collection, and to what extent the data collection is preplanned or adapted across time. Therefore, there are several practices and possibilities researchers should consider before starting a QLR project.

The Fluid Intake Appraisal Inventory for low fluid intake among patients on haemodialysis: Translation and psychometric evaluation of the Danish version.

AIMS AND OBJECTIVES: To translate and evaluate the psychometric properties of a Danish version of the Fluid Intake Appraisal Inventory (Da-FIAI) regarding reliability and validity. BACKGROUND: Patients on haemodialysis are advised to restrict their fluid intake, which often requires patients to change their way of life and health behaviour. DESIGN: Cross-sectional study. METHODS: The FIAI was translated to Danish by two sets of target translations and two sets of back-translations (n = 4). One hundred and ninety-five patients on haemodialysis needing ultrafiltration completed the questionnaire for the evaluation study of the Da-FIAI, and psychometric properties were evaluated. RESULTS: Criterion validity was supported, and the Da-FIAI had an excellent internal consistency; known-groups validity and the factor structure could not be confirmed in the Danish sample. CONCLUSIONS: We have shown that the Da-FIAI is useful in a Danish haemodialysis population to score the patient's ability to avoid drinking in specific situations. RELEVANCE TO CLINICAL PRACTICE: Using the Da-FIAI in the continuing nurse-patient communication, nurses have a validated instrument to evaluate patients' self-efficacy in fluid intake management and systematically identify and advise patients who need additional support.

Exchanging narratives-A qualitative study of peer support among surgical lung cancer patients.

AIM AND OBJECTIVE: The aim of this study was to examine how hospitalised, surgical lung cancer patients experience talking to a former patient, and how the former patient experiences the role as supportive. BACKGROUND: During hospitalisation, patients often create a community in which they can engage with fellow patients. The exchange of experiences with others in a similar situation might increase opportunities for support and complement nursing care, but there is a need for more evidence and understanding on the topic. DESIGN: The methodological framework is based on the French philosopher Paul Ricoeur's text interpretation theory. Qualitative interviews were conducted with nine patients, including a peer informant, using a narrative structure. The analysis was conducted on three levels: (i) naïve reading, (ii) structural analysis and (iii) critical interpretation . RESULTS: Four themes were developed from the analysis of the interviews: Exchanging emotional thoughts is easier with a peer; Talking to a peer reduces loneliness; Being ambiguous about a relationship with fellow patients; and Being the main person in the conversation with a peer. Sharing stories about having similar symptoms and undergoing similar journeys predominated, and the key feature of the contact between patients was the commonality of their stories. CRITICAL INTERPRETATION AND CONCLUSION: Telling one's story to a former patient, and thereby creating a joint, common story, is the essence of this study. The support received in this process can be empowering because knowledge of the illness experience is shared and increased. This can help create new coping strategies. The contact with a former patient offered a way to confirm one's thoughts and to find a way out of the illness perspective, by seeing how the former patient had recovered. RELEVANCE TO CLINICAL PRACTICE: The nursing field faces challenges in the relational aspect of caring because of ever greater efficient and shortened hospital stays; therefore, the peer support concept is becoming increasingly relevant. Patient peers offer each other their own perspectives, and it is important to raise awareness of the value of this and incorporate it into patient stays in hospital.

Living kidney donors' experiences while undergoing evaluation for donation: a qualitative study.

AIM AND OBJECTIVE: To explore living kidney donors' experiences during the donor evaluation process. BACKGROUND: Due to a shortage of organs for kidney transplantation from deceased donors, the living kidney donation rate has increased. The time period until transplantation is often shorter when using living donors compared to deceased donors. Although technological developments in immunology have made it possible to perform successful kidney transplants between donors and recipients, a large disparity still exists between the number of patients needing a kidney transplant and the supply of kidneys from living donors. This need has promoted donation from living kidney donors. The evaluation phase prior to donation is a crucial period in the recruitment of living kidney donors, as it ensures that donors are physically and mentally suitable for donation. DESIGN: A qualitative study taking a phenomenological-hermeneutic approach. METHODS: Data were generated using participant observation during the evaluation period and semi-structured interviews after conclusion of the evaluation. In total, 18 potential donors were included. Data were interpreted and discussed in accordance with Ricoeur's theory of interpretation: naïve reading, structural analysis, critical interpretation and discussion. RESULTS: Feelings of hope concerning acceptance as a donor and concerns for the recipient's illness and everyday life were evident during evaluation. Donors' experiences largely depended on the quality of their communication and interaction with the healthcare professionals. In some cases, donors were supported and cared for, while in other cases, frustrations and vulnerability were evident and emotional support and attention to donors' needs were not present. CONCLUSION: The evaluation period for living kidney donation involves hope, vulnerability and concern. Interaction, communication and support from healthcare professionals to help donors manage this crucial phase are essential. Accordingly, the identification of donors' specific care and support needs, including physical, mental and ethical factors, is key to a positive experience. RELEVANCE TO CLINICAL PRACTICE: The attention, commitment and engagement of healthcare professionals are essential elements in the identification of donors' individual needs.

Relieved or disappointed--experiences of accepted and rejected living kidney donors: a prospective qualitative study.

AIM AND OBJECTIVES: To investigate the perceived experiences and considerations among potential kidney transplantation donors in relation to acceptance or rejection as donors. BACKGROUND: Kidney transplantations are successfully performed in all Western countries, but the prevalence of patients waiting for organs from deceased donors far exceeds the number of organs available. This shortfall has promoted donation by living donors, who enter the donation process with feelings of hope, concern and patience to be accepted or rejected for donation. DESIGN: A phenomenological-hermeneutic approach was applied in the study. METHODS: Semi-structured interviews were conducted with 16 participants. Data were interpreted and discussed in accordance with Ricoeur's theory of interpretation involving: naïve reading, structural analysis, critical interpretation and discussion. RESULTS: Accepted donors experienced relief and delight. Reflections were made on being prepared for donation and on the risks involved. Relationships between donors and recipients became closer. Rejected donors experienced frustration and disappointment, including anxiety about the recipient's prospects. Rejected donors reflected on the reason for rejection, and this could include considerations about changes to their own lifestyle. Reactions from relatives had an impact on donors. CONCLUSIONS: The study concluded that both the accepted and rejected donors were vulnerable and in need of attention, engagement, support and care. The study draws attention to the need for healthcare professionals to be open and sensitive to the donors' descriptions of their unique experiences of being accepted or rejected for kidney donation. RELEVANCE TO CLINICAL PRACTICE: Nurses should be aware that dialogue with donors, including reflections on experiences, is important to reduce and alleviate vulnerability and to give the best possible support and attention, including the opportunity to promote optimal postdonation outcomes.

Adapting to home care in Norway: A longitudinal case study of older Adults' experiences.

This study aimed to describe how older adults with complex health problems manage their everyday lives in their own homes and how they interact with given home care. In this multiple-case study, a total of 14 individual interviews were conducted with five older adults over the course of one year. Deductive and inductive content analyses were performed. Three descriptive categories were each identified in the deductive ('home care as interpersonal continuity', 'home care as information continuity' and 'home care as management continuity') and inductive analyses ('Lack of social contact with carers', 'Desire to be heard throughout the care process' and 'Carers are short on time'). Quality home care services are difficult to realize if interpersonal interaction is subordinated to effective task-solving.

A qualitative meta-synthesis of patients' experiences of intra- and inter-hospital transitions.

AIM: To aggregate, interpret and synthesize findings from qualitative studies of patients' experiences on being transferred/in transition from one hospital to another or from one ward to another. BACKGROUND: Studies about patients' experiences of transfer focused on concepts such as transfer stress, transfer anxiety, and translocation syndrome; however, a meta-synthesis on experiences of transition across different patient populations was lacking. DESIGN: The meta-synthesis approach was based on the guidelines by Sandelowski and Barroso. DATA SOURCE: Six electronic databases were searched for articles published between the years 1999-2011, based on the target phenomenon: patients' experiences of transition after transfer between hospitals or units. Reference lists of included articles were screened for eligible papers. REVIEW METHODS: Data were analysed into meta-summary and meta-synthesis. The qualitative content analysis process started with a search for common themes, concepts, and metaphors. RESULTS: Fourteen qualitative studies were included. Three main categories were identified: transfer as unpredictable, scary and stressful; transfer as recovery and relief; and transfer as sliding into insignificance. The meta-synthesis showed patients' experiences of transitions as critical events where nurses need to focus on patient outcome of transfer as safe, predictable, and individual. CONCLUSION: It was difficult for patients to leave their experiences behind when feeling unimportant. Evidence existed for clinical nurses to continue the development of care quality and safety for patients in transfer/transition. Intervention studies and policy development to improve transfers and transitions for patients are recommended.

Development of clinically meaningful complex interventions - the contribution of qualitative research.

The debate about the "right" methods and designs for nursing research is on-going. According to international surveys, studies on the effectiveness and safety of nursing interventions are rare. Since nursing practice deals daily with interventions, nurses ostensibly expose hospital patients and nursing home residents frequently to unproven therapeutic and preventive nursing interventions. Nursing interventions are predominately of a complex nature, consisting of several components depending on and interacting with each other and their complex contextual factors. Thus, evaluation studies are often challenging and need especially careful development, ambitious designs and systematic evaluations. The UK Medical Research Council (MRC) has proposed a framework, where qualitative and quantitative research rely on each other in order to develop theory-based complex interventions, prepare and conduct their optimal delivery, explain how the interventions work and which conditions contributed in case they did not work. The present essay outlines the points where qualitative research contributes towards the development and evaluation of complex interventions. First, the UK MRC framework is introduced, and secondly it is illustrated where qualitative research should necessarily be located using examples from a handful of qualitative studies. Future clinically meaningful and implementable nursing interventions should best be developed by research groups with both excellent qualitative and quantitative research skills.

Nurses' and Doctors' Experiences of Transferring Adolescents or Young Adults With Long-Term Health Conditions From Pediatric to Adult Care: A Metasynthesis.

The transfer of adolescents and young adults (AYA) with long-term health conditions from pediatric to adult care is a multidisciplinary enterprise where nurses and doctors play an important role. This review aimed to identify and synthesize evidence from qualitative primary reports on how nurses and doctors experience the transfer of AYA aged 13 to 24 years with long-term health conditions to an adult hospital setting. We systematically searched seven electronic databases for reports published between January 2005 and November 2021 and reporting nurses' and doctors' experiences. We meta-summarized data from 13 reports derived from 11 studies published worldwide. Using qualitative content analysis, we metasynthesized nurses' and doctors' experiences into the theme "being boosters." Boosting AYA's transfer was characterized by supporting AYA's and their parents' changing roles, smoothening AYA's transition from pediatric to adult care, and handling AYA's encounters with a different care culture.

Interventions, Participative Role, Barriers, and Facilitators for Involvement in eHealth Communication for People Undergoing Hemodialysis: Protocol for a Scoping Review.

BACKGROUND: eHealth interventions have been shown to offer people living with chronic kidney disease the opportunity of embracing dialysis therapies with greater confidence, the potential to obtain better clinical outcomes and increased quality of life, and diverse and flexible designs and delivery options. eHealth interventions or solutions can offer one-way information without the possibility for dialogue, as with most mobile apps. eHealth interventions intending to enable two-way communication between patients undergoing hemodialysis and health professionals are the focus of this review. eHealth communication interventions that enable two-way communication between patients undergoing hemodialysis and health professionals is an emerging field, but issues relating to participation in eHealth communication for patients undergoing hemodialysis are scarcely described. The current conceptualization of this issue is too scattered to inform the development of future interventions. In this scoping review, we want to assemble and examine this scattered knowledge on participation in two-way eHealth communication for patients undergoing hemodialysis. OBJECTIVE: We want to understand the participative role of people living with chronic kidney disease undergoing hemodialysis in available communicative eHealth interventions and to understand which barriers and facilitators exist for patient involvement in eHealth communication with health professionals. METHODS: A scoping review methodology is guiding this study. Peer-reviewed primary studies, including quantitative, qualitative, and mixed methods study designs will be included. A systematic search for published studies, dissertations, and theses at the doctoral level in the English language will be conducted in five databases (MEDLINE, Embase, CINAHL, Scopus, and ProQuest Dissertations and Theses). The included literature will focus on adult (18 years or older) patients undergoing hemodialysis who are involved in eHealth communication with health professionals. Data on the type of eHealth communication interventions, the participative role, and barriers and facilitators for the involvement in eHealth communication for people undergoing hemodialysis will be extracted independently by two reviewers. The extracted data will be collected in a draft charting table prepared for the study. Any discrepancies between the reviewers will be solved through discussion or with a third reviewer. RESULTS: Results are anticipated by the spring of 2023 and will be presented in tabular format along with a narrative summary. The anticipated results will be presented in alignment with the objectives of the study, presenting findings on the participative role of patients undergoing hemodialysis in eHealth communication interventions. CONCLUSIONS: We anticipate that this study will inform on eHealth communication interventions and the level of patient participation in eHealth communication for patients undergoing hemodialysis. The systematized overview will possibly identify research gaps and motivate further development of eHealth communication to ensure patient participation. The findings will be of interest to key stakeholders in clinical care, research, development, policy, and patient advocacy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/38615.

Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review.

OBJECTIVE: To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare. DESIGN: Environmental scan employing rapid review methods. DATA SOURCES: MEDLINE, PsycInfo and CINAHL were searched from 6-9 April 2021 from database inception up to the date of the search. ELIGIBILITY CRITERIA: Quantitative, observational and mixed methods studies with empirical data on outcomes used to assess any type of intervention aiming to increase patient involvement with their healthcare. Language limitations were Danish and English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data from 10% of the included studies and, due to their agreement, the data from the rest were extracted by first author. Data were analysed with reference to existing categories of measuring person-centred care; findings were synthesised using narrative summaries. Adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines were used to guide reporting. RESULTS: Among 3767 records, 43 studies met the inclusion criteria, including 74 different measures used to evaluate interventions aimed at increasing patient involvement within healthcare in Danish hospital and community settings. Generic measures assessed: patient engagement (n=3); supporting self-management (n=8); supporting shared decision-making (n=9); patient satisfaction and experiences of care (n=11); health-related patient-reported outcome (n=20). CONCLUSIONS: Across Denmark, complex interventions designed to improve patient involvement with healthcare vary in their goals and content. Some targeting healthcare professionals, some patient health literacy and some service infrastructure. A plethora of measures assess the impact of these interventions on patient, professional and service delivery outcomes. Few measures assessed patient involvement directly, and it is unclear which proxy measures capture indicators of perceived involvement. Lack of conceptual clarity between intervention goals, the components of change and measures makes it difficult to see what types of intervention can best support change in services to ensure patients are more effectively involved in their healthcare.

Prevalence of musculoskeletal complaints among haemodialysis nurses - a comparison between Danish and Swedish samples.

Objective. The repetitiveness of priming and dismantling disposables for haemodialysis treatments might be an important contributor to musculoskeletal complaints. The objective was therefore to compare the prevalence of musculoskeletal complaints among haemodialysis nurses in Denmark and Sweden. Methods. For this cross-sectional study, nurses were recruited from haemodialysis centres in Denmark (n = 194) and Sweden (n = 351). Prevalence of musculoskeletal complaints was evaluated using the Nordic musculoskeletal questionnaire. Results. The percentage of nurses reporting musculoskeletal complaints from at least one part of their body was 90.2% in the Danish sample and 88.9% in the Swedish sample. The anatomical locations with the most complaints were the neck, lower back and hands. Except for the proportion of complaints concerning the neck, there were no differences between the countries. Absenteeism from work was mostly due to complaints regarding the hands. Conclusion. The prevalence of musculoskeletal complaints seems to be higher among haemodialysis nurses than among nurses in general. Because complaints concerning the hands are common, and also related to absenteeism from work, it is of particular importance that manufacturers of dialysis equipment and nurse managers acknowledge these occupational health and safety hazards in their efforts to create a good work environment.

Experiences of a non-clinical set of adolescents and young adults living with persistent pain: a qualitative metasynthesis.

PURPOSE: Around 15%-30% of adolescents and young adults (AYAs) experience persistent or chronic pain. The purpose of this study was to synthesise evidence from qualitative primary studies on how AYAs in a non-clinical population experience living with persistent pain. METHOD: A qualitative metasynthesis guided by Sandelowski and Barroso's guidelines was used. The databases Medline, Embase, Cinahl, PsycINFO, Mednar and ProQuest were searched for studies from 1 January 2005 to 15 February 2021. Inclusion criteria were AYAs aged 13-24 years with first-hand experience of living with persistent, recurrent or episodic non-clinical pain in any body site. Pain associated with a medical diagnosis, malignant diseases, medical procedures or sport activities was excluded. RESULTS: Of 2618 screened records, data from nine studies conducted in a Western cultural context including 184 participants (127 female and 57 male aged 11-28 years) were analysed into metasummaries and a metasynthesis. Headaches was the most focused pain condition (n=5), while three of the studies did not specify type of pain. The participants' experiences were characterised by (1) juggling pain with everyday life; (2) exploring sources of information to manage pain; (3) AYAs' use of medication to find relief and (4) non-pharmacological strategies for pain relief. CONCLUSION: These AYAs experience of how pain influences everyday life, and their striving to find relief from pain by support from family, friends, professionals and the Internet should be strongly respected. Public health nurses and other healthcare professionals encountering AYAs need to respect their pain experiences, and to support them in healthy coping strategies. Further studies on this issue are needed, especially research focusing on AYAs pain in exposed populations and AYAs from non-Western cultures.

Non-formal patient handover education for healthcare professionals: a scoping review.

OBJECTIVE: The objective of this scoping review was to identify, organize and present the underpinning learning theories, theoretical frameworks, didactics, content and evaluation methods used in existing literature on non-formal patient handover learning programs for healthcare professionals to highlight existing gaps in evidence. INTRODUCTION: Clinicians are aware that the professional patient handover between healthcare settings poses a safety risk for patients. Learning programs for healthcare professionals improve patient handovers; however, there has been little formal exploration of the content of patient handover learning programs that elicit efficacious, non-formal learning activities. This scoping review therefore sought to investigate the concept of non-formal patient handover learning. INCLUSION CRITERIA: This scoping review considered studies that included healthcare professionals from any healthcare profession examining non-formal patient handover learning in a variety of settings. Both qualitative and quantitative studies, as well as conference abstracts and reviews, were considered. METHODS: An extensive search of multiple databases was undertaken. We considered studies published from 2000 onwards in English, Norwegian, Swedish and Danish. Data extraction was undertaken using an extraction tool developed specifically for this scoping review. The results of the review are presented in narrative form supported by tables. RESULTS: Fourteen studies were included. Study populations mostly comprised nurses or inter-professional groups of healthcare professionals, and non-formal learning program evaluation was performed in the context of intra-hospital handover, handover between hospital and other healthcare settings, and handover in the provision of pre-hospital and emergency services. Non-formal patient handover learning programs lacked reporting on the use of underpinning learning theory. The content of handover learning programs was informed by theoretical frameworks, checklists, mnemonics and frameworks developed based on observations in clinical practice or expert knowledge. Regardless of the type of handover, communication was the most-reported theme. The most-reported didactic was simulation. Pre- and post-intervention evaluation was the most-reported design. Evaluation methods varied from questionnaires and tests to observations and thematic analysis. Outcomes were reported on level 1-3, using Kirkpatrick's hierarchical model. No studies reported on patient outcomes. CONCLUSIONS: Gaps in knowledge were identified in the limited number of studies, comprising lack of transparency in the design of patient handover learning programs, notably concerning underpinning learning theories and learning objectives, lack of studies covering multiple settings, lack of knowledge regarding the impact of time on learning, lack of studies of any long-term impact, and lack of studies reporting on patient outcomes. Further research on non-formal handover learning programs is needed to enhance the transparency of program design and coherence in use of educational components from underpinning learning theories to evaluation methods. Few studies manage to document outcomes at the patient level.

Associations between materials used and work-related musculoskeletal hand complaints among haemodialysis nurses.

BACKGROUND: One in every two haemodialysis nurses has reported musculoskeletal complaints concerning their hands, which is twice that reported for hospital nurses in general. It is possible that there is an association between the materials used by haemodialysis nurses and the occurrence of hand complaints. OBJECTIVES: To examine the association between the type of dialysis machine and disposables used with the occurrence of hand complaints among haemodialysis nurses. To compare occupational risks of developing work-related musculoskeletal disorders based on the materials used for haemodialysis. DESIGN: Cross-sectional. PARTICIPANTS: Two hundred and eighty-two nurses working in 27 haemodialysis centres in Sweden participated in a survey, and 19 nurses at five centres were observed during priming procedures. MEASUREMENTS: Nurses supplied demographic data and answered the Nordic Musculoskeletal Questionnaire. Centre level data regarding machines and disposables used for haemodialysis during the past year were also collected. RESULTS: There were no differences in the prevalence of hand complaints based on the type of haemodialysis machines, dialysers or tubing used. There were no differences found in physical exposure to the hands during priming, based on machine type used. CONCLUSION: The results of this study could not reveal any association between disposable materials used and the occurrence of hand complaints among haemodialysis nurses. Additionally, there were no occupational risks detected based on the types of machines used. Hence, the results of the present study strongly indicate that a deeper ergonomic analysis of the work environment is needed to understand the prevalence of hand complaints among nurses working in haemodialysis settings.

Home care nurses facilitating planned home deaths: a scoping review protocol.

OBJECTIVE: This scoping review aims to examine and map existing evidence on home care nurses facilitating planned home deaths, as well as to identify knowledge gaps important for further research on the topic. INTRODUCTION: Nurses may be able to offer new models of care within the primary setting for palliative patients. There is some evidence for the efficacy of home based palliative care and dying at home, but there is a lack of information on how home care nurses facilitate planned home deaths. A preliminary search shows no ongoing or existing scoping reviews describing how home care nurses facilitate home deaths. INCLUSION CRITERIA: Eligible studies will explore how home care nurses facilitate planned home deaths in home care services. Papers related to other health care professions will be excluded. The authors aim to include papers related to facilitating planned home deaths, understood as situations where patients receiving palliative care wish to die in their own home and where home care services help facilitate this. The setting is home care services. Studies focusing on other settings, such as nursing homes or institutions, will be excluded. METHODS: Medical literature databases including MEDLINE, CINAHL, Scopus, Google Scholar, Cochrane Database of Systematic Reviews, and ProQuest Dissertations and Theses will be searched. Retrieved papers will be screened for inclusion by two reviewers. Data will be extracted from included papers, and a narrative summary will accompany the charted results and describe how the results relate to the review objective.