Assessing family function: older adults vs. care nurses: a cross-sectional comparative study.

BACKGROUND: This study aimed to assess family function in home care for older adults. Understanding family dynamics is essential for providing quality care to older adults choosing to age in place. METHODS: In a cross-sectional study, 53 patients aged 65 or older receiving home care were evaluated, along with four home care nurses. The General Function of Family Assessment Device (FAD-GF) was used for self-assessment to examine family resources. RESULTS: Only 5.7% of older adults reported good family function. Strong correlations were found between assessments by nurses and older adults. Among the six aspects of family function, "problem solving," "communication," "affective responsiveness," and the overall results showed no disparities between the evaluations of older adults and nurses. CONCLUSIONS: Home care nurses can effectively assess family function using the FAD-GF, particularly after six months of care. This assessment can help identify family issues and enhance home care quality through nurse training in FAD-GF application.

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC). METHODS: This mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews. RESULTS: Overall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families. CONCLUSIONS: Findings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers' insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.

Improve the satisfaction of medical staff on the use of home nursing mobile APP by using a hybrid multi-standard decision model.

OBJECTIVE: To identify critical satisfaction gaps in a home nursing mobile application (APP) using a systematic decision-making model. METHODS: Initially, the decision-making trial and evaluation laboratory method was used to analyze the relationship structure and corresponding weights among the indicators. The Importance-Performance Analysis (IPA) method was used to identify the categories of all indicators and their corresponding strategic directions. Twenty-six home nursing specialists currently providing home nursing services were recruited for this study. RESULTS: The IPA results revealed that "Assurance," "Reliability," and "Personal security protection" are critical satisfaction gaps. From the influence network and weight results, "information quality" and "system quality" were the critical quality factors in the home nursing mobile APP. The influence of the network relationship structure and weight demonstrated a 98.12% significance level, indicating good stability. CONCLUSION: Continuous improvement in information and system quality is recommended to optimize the overall quality of the home nursing mobile APP. Additionally, user demands should be considered, and personal safety guarantee functions should be developed and integrated into the system to ensure the safety of home nursing workers.

Digital ethical reflection in home nursing care: Nurse leaders' and nurses' experiences.

BACKGROUND: Nurse leaders increasingly need effective tools that facilitate the prioritisation of ethics and help staff navigate ethical challenges and prevent moral distress. This study examined experiences with a new digital tool for ethical reflection, tailored to improve the capabilities of both leaders and employees in the context of municipal long-term care. AIM: The aim was to explore the experiences of nurse leaders and nurses in using Digital Ethical Reflection as a tool for ethics work in home nursing care. RESEARCH DESIGN: The study employed a qualitative design, incorporating individual and focus group interviews for data collection. Qualitative content analysis was used to analyse the data. PARTICIPANTS AND RESEARCH CONTEXT: The participants comprised six nurse leaders and 13 nurses, representing six home care zones across two Norwegian municipalities. ETHICAL CONSIDERATIONS: The study involved informed, voluntary participation and was approved by the Norwegian Agency for Shared Services in Education and Research. FINDINGS: Four themes were developed: a constant walk on the edge between engagement and discouragement and lost in translation describe the process, while tuning in to the ethical dimension and navigating ethical uncertainties illuminate the experienced significance of Digital Ethical Reflection. CONCLUSION: Success with Digital Ethical Reflection in home nursing care depends on clear leadership planning, nurses' understanding of the tool's purpose, and active use of digital registrations. Support from ethically interested nurses enhances overall engagement. Further research is needed to explore the potential of Digital Ethical Reflection as an additional tool in long-term care ethics work.

Nursing care in patients with dependency-related skin injuries in the community: a scoping review.

PURPOSE: Dependency-related skin injuries (DRSI) occur in people who need a high level of support to carry out day-to-day activities. Owing to the ageing population, the number of people at risk of DRSI is increasing. Most wound care is performed by nurses in the community. This scoping review aimed to identify the extent of literature on nursing care for patients with or at risk of developing DRSI living in their own home. MATERIALS AND METHODS: A scoping review was conducted. RESULTS: A total of 28 studies met the inclusion criteria and four main themes emerged: features of the community setting; wound types, causes and management; prevention strategies around aetiology and holistic care; care management and local wound care. CONCLUSION: Although most wounds occur in and are treated in the community, there is a paucity of research on wounds in this setting. The care of patients with DRSI in the community is complex and prevention according to the individual aetiology of each lesion is the key factor in wound care.

Home Health Nurses' Perceptions of Caring for Persons With Severe and Persistent Mental Illnesses.

BACKGROUND: Severe and persistent mental illnesses (SPMIs) affect a significant portion of the adult population in the United States. Despite their enhanced medical disease burden, individuals with SPMIs often lack access to appropriate medical care. Home health services offer cost-effective options for caring for this population in the comfort of their homes. However, little is known about the perceptions of home health nurses providing care to persons with SPMIs, and how they are adjusting care to persons with SPMIs. AIMS: This study aimed to explore home health nurses' perspectives on caring for persons with SPMIs. METHODS: Using a grounded theory approach, individual semi-structured interviews were conducted with home health and home hospice nurses. The research questions focused on the nurses' experiences, barriers and facilitators to care, and the impact of the home environment on caring for persons with SPMIs. Data analysis followed coding procedures outlined in grounded theory, resulting in the development of an axial coding model. RESULTS/CONCLUSIONS: The findings provide valuable insights into the challenges and opportunities faced by home health nurses when providing care for individuals with SPMIs. The outcomes of this study are intended to contribute to the understanding of current care practices and can guide the allocation of resources to improve care for this vulnerable population, such as incorporating training specific to persons with severe psychiatric illnesses.

Trends in the use of home care services among Norwegians 70+ and projections towards 2050: The HUNT study 1995-2017.

BACKGROUND: Life expectancy (LE) is increasing worldwide, while there is lack of information on how this affects older individuals' use of formal home care services. AIM: We aimed to decompose LE into years with and without home care services and estimate projected number of users towards 2050 in Norway for people 70 years or older. METHODS: This study is based on a sample of 25,536 participants aged 70 years and older in the Trøndelag Health Study (HUNT) survey 2 (1995-1997), 3 (2006-2008), or 4 (2017-2019) linked with national data on mortality. Prevalence of home care services was standardised to the Norwegian population by age and sex. The Sullivan method was used to estimate expected years with and without home help services and nursing services for the years 1995, 2006 and 2016. Data from HUNT4 and Statistics Norway were used to estimate projected use of these services between 2020 and 2050. RESULTS: During 1995-2017, the use of home help services decreased from 22.6% to 6.2% (p < 0.001), and from 6.4% to 5.5% (p = 0.004) for home nursing services. Adjusted for age and sex, the use of home help services decreased significantly over time (p < 0.001), while home nursing services were stable (p = 0.69). LE at age 70 increased from 11.9 to 15.3 years in men (p < 0.05) during 1995-2017, and from 14.7 to 17.1 in women (p < 0.05). In the same period, the expected years receiving home help decreased from 2.6 to 1.1 in men (p < 0.05), and from 4.4 to 2.1 in women (p < 0.05). The expected years receiving home nursing increased from 0.6 to 0.9 in men (p < 0.05), and from 1.3 to 1.7 in women (p < 0.05). Projected numbers of people 70+ in Norway in need of either of these services were estimated to rise from 64,000 in 2020 to 160,000 in 2050. CONCLUSION: While overall life expectancy increased, the expected years receiving home help have decreased and home nursing slightly increased among the Norwegian population aged 70 years and older during 1995-2017. However, the substantial increase in the projected number of older adults using home care services in the future is an alert for the current health care planners.

Registered nurses' exposure to high stress of conscience in long-term care.

BACKGROUND: In long-term care, registered nurses and other care providers often experience tensions between ideals and realities in the delivery of services, which can result in stress of conscience. Burnout, low quality of care and a tendency to leave the profession are perceived as consequences. OBJECTIVES: This study aimed to identify the socio-demographic and work-related factors associated with a high level of stress of conscience, particularly between nursing occupations. RESEARCH DESIGN: A cross-sectional survey was conducted among care providers who worked in Norwegian nursing homes and home care services in the spring of 2021. The sample consisted of 950 registered nurses and 1143 other care providers. Data were collected online using the Stress of Conscience Questionnaire (SCQ). ETHICAL CONSIDERATIONS: Participation was voluntary and based on consent. The study was approved by the Norwegian Center for Research Data. RESULTS: Registered nurses were nearly twice as likely to report high levels of stress of conscience compared to other care providers in long-term care. In addition, being a female, living alone, caring for their own children, working in an institution (versus home based), working >75% time, working shifts, not having scheduled meetings for ethical reflection and working in municipalities with a higher population density were factors associated with a high level of SCQ score. DISCUSSION: Knowledge of factors that increase the risk of high SCQ scores in registered nurses provides opportunities for prevention. Managers in long-term care should pay more attention to how work is distributed between the occupational groups and should facilitate real opportunities for ethical reflection. CONCLUSIONS: The results of this study show that registered nurses have particular exposure to high levels of stress of conscience compared to other care providers in long-term care. Particular attention should be paid to registered nurses working in nursing homes.

Post-Transplant Complications in Patients Undergoing Autologous Hematopoietic Cell Transplantation (HCT)-A Comparative Analysis of Home Care versus Hospitalized Patients.

Background and Objectives: The increase in indications for hematopoietic cell transplants (HCTs) has led to the development of new care options after said transplant, such as home care after transplantation, which improves the patients' quality of life. The main purpose of this research is to analyze the differences in the appearance of post-transplant complications between patients having underwent autologous HCT with at-home post-transplant modalities and those under in-hospital post-transplant care. Materials and Methods: An observational, analytical, longitudinal, and retrospective study of cases and controls. All transplanted people in the domiciliary model since 2020 are included as cases (20 subjects). For each case, two controls (40 subjects) are proposed among patients who received an autologous transplant in a hospital in the last five years with a similar demographic and pathological base profile in each case. Results: No significant differences were found between cases and controls, except for the Karnofsky value, which was higher in people receiving home treatment (91.7% vs. 87.74%; p = 0.05). The average number of days of the process post-transplantation was more significant at home (processing days 22.4 ± 2.6; post-transplantation days of 16.4 ± 2.08 versus 21.21 ± 4.18, with a mean of 15.51 ± 3.96 days post-transplant (days of the process p = 0.022; days post-transplant p = 0.002)). There is a more significant presence of neutropenic fever, mucositis, and positive blood cultures in the post-transplant patients who remain in the hospital. In contrast, the patients receiving home care post-transplantation undergo significantly more weight loss. Regarding the odds ratio of the appearance of adverse events, in the hospital setting, it is up to 8.5 times more likely to encounter neutropenic fever, 4.63 times more likely for mucositis, and 6.65 times more likely for the presence of pathogens in blood cultures. Conclusions: The home care modality in the post-transplant phase does not show an inferiority in conditions in the management and safety of the patient concerning the appearance of adverse events. However, more significant weight loss is detected in patients at home, and an increased risk of episodes of neutropenic fever, mucositis, and positive blood cultures for patients in hospital settings.

Association of a home-based nursing service during chemotherapy with the transfer to home care immediately after the last chemotherapy treatment in patients with advanced cancer.

BACKGROUND: The appropriate timing of introducing the home-based nursing service to patients with advanced cancer has not been clarified. This study conducted a retrospective cohort study to investigate the associations of the early utilization of the home-based nursing service during chemotherapy with the place of care immediately after the last chemotherapy treatment in patients with advanced cancer. METHODS: Among the patients referred to the palliative care team of the University of Tsukuba Hospital between January 2018 and December 2019, patients with advanced cancer undergoing chemotherapy or before the start of chemotherapy at referral were included. The study patients who utilized the home-based nursing service during chemotherapy were classified into the early utilization group. The primary endpoint was the place of care immediately after the last chemotherapy treatment. RESULTS: Of the 1154 patients referred to the palliative care team during the study period, 261 were eligible for this study. Of these patients, 15.3% of patients (n = 40) received the home-based nursing service during chemotherapy. The proportion of patients transferred to home care after the last chemotherapy treatment was 17.5% in the early utilization group and 7.2% in the control group. The multivariate analysis revealed that the early utilization of the home-based nursing service during chemotherapy was significantly associated with the transfer to home care (odds ratio = 3.077; 95% confidence interval, 1.113-8.502). CONCLUSION: The early utilization of the home-based nursing service during chemotherapy might be associated with the transfer to home care immediately after the last chemotherapy treatment.

Current conditions and significance of outpatient cardiac rehabilitation and home nursing-care services in heart failure patients with mid-range or preserved ejection fraction: post-hoc analysis of the REAL-HF registry.

The effects of outpatient cardiac rehabilitation (OCR) implementation and home nursing-care services (HNS) use are not well defined in patients with heart failure (HF) with mid-range or preserved left-ventricular ejection fraction (EF) (HFmrEF or HFpEF). Through a post-hoc analysis of the HF registry in Hiroshima Prefecture of Japan (REAL-HF), we investigated the current conditions and significance of OCR and HNS in HFmrEF or HFpEF patients. The REAL-HF enrolled adult patients hospitalized with HF in eight regional core hospitals. Patients discharged home were followed for conditions of OCR and HNS and the primary endpoints (all-cause death or unscheduled readmission) for 1 year. The patients were classified into HF with reduced EF (< 40%) (HFrEF) or HFmrEF (40% ≤ EF < 50%) or HFpEF (EF ≥ 50%) group. We followed 195 HFrEF and 381 HFmrEF or HFpEF patients. OCR was generally underutilized, especially in HFmrEF or HFpEF patients (rate of completion [5-month program], 3.2%), whereas HFmrEF or HFpEF patients were more likely to use HNS after discharge home than HFrEF patients (44.1% vs. 27.2%, P < 0.0001). Patients with the use of HNS generally had lower scores of Mini-Mental State Examination and EuroQol 5 dimensions than those without. Multivariate analysis adjusted for medical and social factors showed that the completion of OCR was a strong negative predictor of the primary endpoints both in HFrEF (hazard ratio [HR] 0.10; 95% confidence interval [CI] 0.01-0.75; P = 0.025) and HFmrEF or HFpEF (HR 0.11; 95% CI 0.01-0.78; P = 0.028) patients, whereas the use of HNS was a positive predictor only in HFmrEF or HFpEF patients (HR 1.41; 95% CI 1.00-1.97; P = 0.047). In conclusion, continuous OCR, despite its inadequate implementation, was associated with favorable overall outcomes, while the necessity for HNS related to impaired cognitive function and quality of life was associated with poorer overall outcomes in HFmrEF or HFpEF patients discharged home. Further study is warranted to fully consider the factors related to OCR implementation and HNS use.

Self-management Interventions for People With Parkinson Disease: Scoping Review.

BACKGROUND: Parkinson disease can impose substantial distress and costs on patients, their families and caregivers, and health care systems. To address these burdens for families and health care systems, there is a need to better support patient self-management. To achieve this, an overview of the current state of the literature on self-management is needed to identify what is being done, how well it is working, and what might be missing. OBJECTIVE: The aim of this scoping review was to provide an overview of the current body of research on self-management interventions for people with Parkinson disease and identify any knowledge gaps. METHODS: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) and Population, Intervention, Comparator, Outcome, and Study type frameworks were used to structure the methodology of the review. Due to time and resource constraints, 1 reviewer systematically searched 4 databases (PubMed, Ovid, Scopus, and Web of Science) for the evaluations of self-management interventions for Parkinson disease published in English. The references were screened using the EndNote X9 citation management software, titles and abstracts were manually reviewed, and studies were selected for inclusion based on the eligibility criteria. Data were extracted into a pre-established form and synthesized in a descriptive analysis. RESULTS: There was variation among the studies on study design, sample size, intervention type, and outcomes measured. The randomized controlled trials had the strongest evidence of effectiveness: 5 out of 8 randomized controlled trials found a significant difference between groups favoring the intervention on their primary outcome, and the remaining 3 had significant effects on at least some of the secondary outcomes. The 2 interventions included in the review that targeted mental health outcomes both found significant changes over time, and the 3 algorithms evaluated performed well. The remaining studies examined patient perceptions, acceptability, and cost-effectiveness and found generally positive results. CONCLUSIONS: This scoping review identified a wide variety of interventions designed to support various aspects of self-management for people with Parkinson disease. The studies all generally reported positive results, and although the strength of the evidence varied, it suggests that self-management interventions are promising for improving the care and outcomes of people with Parkinson disease. However, the research tended to focus on the motor aspects of Parkinson disease, with few nonmotor or holistic interventions, and there was a lack of evaluation of cost-effectiveness. This research will be important to providing self-management interventions that meet the varied and diverse needs of people with Parkinson disease and determining which interventions are worth promoting for widespread adoption.

Causes of adverse events in home mechanical ventilation: a nursing perspective.

BACKGROUND: Adverse events (AE) are ubiquitous in home mechanical ventilation (HMV) and can jeopardise patient safety. One particular source of error is human interaction with life-sustaining medical devices, such as the ventilator. The objective is to understand these errors and to be able to take appropriate action. With a systematic analysis of the hazards associated with HMV and their causes, measures can be taken to prevent damage to patient health. METHODS: A systematic adverse events analysis process was conducted to identify the causes of AE in intensive home care. The analysis process consisted of three steps. 1) An input phase consisting of an expert interview and a questionnaire. 2) Analysis and categorisation of the data into a root-cause diagram to help identify the causes of AE. 3) Derivation of risk mitigation measures to help avoid AE. RESULTS: The nursing staff reported that patient transportation, suction and tracheostomy decannulation were the main factors that cause AE. They would welcome support measures such as checklists for care activities and a reminder function, for e.g. tube changes. Risk mitigation measures are given for many of the causes listed in the root-cause diagram. These include measures such as device and care competence, as well as improvements to be made by the equipment providers and manufacturers. The first step in addressing AE is transparency and an open approach to errors and near misses. A systematic error analysis can prevent patient harm through a preventive approach. CONCLUSION: Risks in HMV were identified based on a qualitative approach. The collected data was systematically mapped onto a root-cause diagram. Using the root-cause diagram, some of the causes were analysed for risk mitigation. For manufacturers, caregivers and care services requirements for intervention offers the possibility to create a checklist for particularly risky care activities.

Exploring home-based care nurses' mindset for nursing practices: a phenomenological study.

BACKGROUND: Home nursing is an essential aspect of healthcare and can address future health challenges. The nature of nursing and its practical applications are of particular interest, as nursing involves technical knowledge, rational procedures, and diverse skills. It is consequential to explore nursing practices in context to understand how nurses navigate their work. This study aimed to explore the characteristics of home care nurse practices and how nurses solve tasks in the context of nursing in home care. METHODS: This is an exploratory qualitative research study using a descriptive phenomenological approach. We reported following the COREQ guidelines. Fifteen in-depth interviews with nurses from four Norwegian municipalities were conducted and analysed according to stepwise inductive analysis. RESULTS: The analysis revealed three main patterns that characterise nursing practices in home care: 'To be vigilant', 'To be an all-rounder', and 'To act with independence'. The content and distinction of these patterns are discussed through a theoretical framework of 'clinical mindlines'. There are multiple mindlines and complex realities for home-based care nursing. The nurses displayed great sensitivity in their practice, were knowledgeable about where they focused their attention, adapted their actions to the context, and demonstrated their independence as professionals. CONCLUSION: Nurses' vigilance and contextual insight are critical to their practice approach and task-solving abilities. These professionals need to manage emergent organisations and exercise independence and professional judgment when adapting their work to the context of home care patients. Future health policy should not strictly be based on standardised guidelines; depending on the context, it is also appropriate to focus on nurses' practical knowledge and the importance of mindlines.

Developing Algorithm Based on Activity and Mobility for Pressure Ulcer Risk Among Older Adult Residents: Implications for Evidence-Based Practice.

BACKGROUND: A pressure ulcer (PU) is a localized injury to the skin or underlying tissue usually over a bony prominence. The prevention PU per patient per day is costly; therefore, the detection of a PU at its earliest stage is imperative to afford timely interventions. Currently, there are very few clinically useful tools to assist with early PU detection and prevention. AIM: There were two primary aims of this study: (1) to investigate the relationship between activity, mobility, and PU development; and (2) to ascertain the next steps for delineating an algorithm based on activity and mobility for detecting PU risk among older adult residents in long-term care. METHOD: This quantitative, prospective, descriptive, non-experimental study was conducted between July 2019 and March 2020 among 53 older adult residents who were followed for 4 consecutive days. Participants' Braden score, Elderly Mobility Scale (EMS) score, Movement Level, and 6-item Cognitive Impairment Test score were assessed. Further, the sacrum and heels were assessed daily using a non-invasive subepidermal moisture (SEM) scanner and visual skin assessment (VSA). SEM values > 0.5 were considered as indicative of the presence of an SEM-PU. RESULTS: The incidence rate of VSA-PU was 15.1% (N = 8). There was an incidence of 87.5% (N = 42) of SEM-PU damage. According to the Braden subscale, Mobility Braden, most of the participants (62.2%, N = 33) were assessed as having no limitations/slightly limited mobility, while the EMS indicated that most of the participants (67.9%, N = 36) were classed in an independent category. From the 42 SEM-PUs observed, 62% (N = 26) occurred among the low movers, and 38% (N = 16) occurred among the high movers. LINKING EVIDENCE TO ACTION: Using traditional methods for the assessment of movement does not provide insight into the protective nature of the movement. Given that both low- and high-moving patients can develop tissue damage, it is important to focus on the assessment of movement using more objective measures and algorithms, which enable real-time assessment of the protective nature of the movement. This would enable development of person-centered PU prevention strategies to reduce the burden of this significant healthcare problem.

Community-based homecare nursing in Denmark: exploring factors related to substitution of nurses by ancillary health professionals.

BACKGROUND: Demographic changes and shorter hospital stays have made community-based homecare nursing an increasingly important part of the healthcare organisation. This development may also impact the secondary healthcare system. Optimal use of resources is key to meeting the future challenges. Nevertheless, the research-based knowledge on homecare nursing is scarce. The aim of this study was to examine factors related to homecare nursing tasks that could have been performed by ancillary health professionals. METHODS: A population-based survey involving all homecare nurses in the homecare services in one municipality in Denmark was performed. The nurses registered all contacts during daytime for one week using a registration form with a series of items to identify factors related to possible substitution of nurse-performed tasks. Statistical analyses were used to identify associations between specific factors and potential substitution of the performing type of healthcare professional. The study was approved by and is registered at VIA University College in accordance with the General Data Protection Regulation of the EU. RESULTS: Homecare nurses registered 941 representative visits in the municipality. Substitution by ancillary health professionals was considered a possibility by the nurses in 28.3% of the cases. When adjusting for age, gender, type of visit, need for extra healthcare services and vulnerability, we established that the nurses more often found that ancillary health professionals could have provided the care in unplanned visits and in visits to patients above 90 years of age. CONCLUSIONS: The results indicate potential for optimising the available nursing resources as substitution by ancillary health professionals was considered possible in numerous visits. In view of the increasing demands for community-based homecare nursing, it is important to make the most of the available resources in the future. Substitution of nurses for some tasks could be a feasible solution.

The 'difficult patient' phenomenon in home nursing and 'self-inflicted' illness.

RATIONALE AND AIM: Home nurses work largely alone, and consequently, 'difficult patients' can be challenging for them. Understanding of this phenomenon can have a major impact on the quality of care. The aim is to explore how nurses characterise, relate to and interact with these patients. Why do nurses perceive some patients as difficult and what are the consequences for the patient? What are these patients´ expectations of the nurses and their perceptions of illness? METHODS: An ethnographic study with 30 participant observations of 12 nurses visiting 146 patients was conducted. A total of 6 interviews were made with 4 'difficult patients' and 11 interviews with 5 nurses. FINDINGS: In the nurses' view, the 'difficult patients' had little insight into their illnesses, denied they were ill and were noncompliant. Some nurses had negative feelings about a patient, regarded the patient as too demanding or found the patient´s personal characteristics repulsive. The difficulty lies in the relationship between nurse and patient. Important health problems of some patients remained unrecognised. The nurses regarded the patients' illnesses as self-inflicted. The patients had low expectations of nurses, lacked knowledge about what to expect of them, and their views on their illnesses differed from those of the nurses. Contributing causes of patients becoming difficult for nurses seemed to be different norms and values and the nurses' work situation. CONCLUSION: It is important that nurses communicate their knowledge about the connection between illness and pathogenic social conditions and discuss 'self-inflicted' illness and their role in relation to this. Supervision is suggested. Improved working conditions could lead to fewer 'difficult patients'. STUDY LIMITATIONS: The perspectives of patients should be studied in greater detail.

Discrepancies between subjective importance and actual everyday practice among very old adults and the consequences for autonomy.

BACKGROUND: An individual's everyday practice in very old age is based on stable dispositions and on the living conditions associated with the person's stage of life. Age-associated changes in living conditions can cause discrepancies between the person's dispositions and actual everyday practice that have consequences for the quality of life. OBJECTIVE: The aim of this paper is to look more closely at such discrepancies and their associations with living conditions in very old age (long-term care needs, multimorbidity, care tasks) as well as with the feeling of autonomy as an aspect of quality of life. METHODS: A cross-sectional analysis was conducted using data from the first wave of the NRW80+-study on the quality of life of people aged 80 years and over. Data on the subjective importance of five areas of everyday practice and on the frequency of translating these dispositions into practice were used. The analysis focuses on the occurrence of large discrepancies that arise if the subjective importance of an everyday practice deviates considerably from the frequency of performing it. RESULTS: Among the very old population surveyed, solitary activities are considered the most important, and they are carried out most often. Multimorbidity, long-term care needs, and private care responsibilities are significantly associated with the experience of large discrepancies. Finally, very old adults with large discrepancies report feelings of reduced autonomy. CONCLUSION: These initial results show that age-associated changes in living conditions can be accompanied by difficulties for very old adults to put their dispositions into practice. Attention should be paid to such discrepancies to avoid negative consequences for quality of life.

The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.

BACKGROUND: Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. METHODS: We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. RESULTS: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. DISCUSSION: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

A nation-wide cross-sectional study of variations in homecare nurses' assessments of informational continuity - the importance of horizontal collaboration and municipal context.

BACKGROUND: Numerous studies have revealed challenges associated with ensuring informational continuity in municipal care services for older adults with comprehensive, prolonged and complex care needs. Most research is qualitative and on the micro-level. The aim of the current study is to map variation in homecare nurses' assessments of available information in the municipalities' documentation system and investigate the extent to which these assessments are associated with perceived quality of collaborations and with municipal context. METHODS: We used data from a nationwide web-based survey among 1612 nurses working with older adults (65+) in homecare services in Norway. Responses from individual homecare nurses were linked with municipal-level data from the public registers. Data were analysed with descriptive statistics and multilevel regression analyses. RESULTS: Information on the recipients' medications and medical condition was considered most often available (42.8 and 20.0% responding very often/always), whereas information related to psychosocial needs and future follow-up was perceived less available (4.5 and 6.7% responding very often/always). Homecare nurses' perceptions of the quality of collaboration with the GP and the allotment office were independently and positively associated with assessments of informational continuity (ß =0.86 and ß =0.96). A modest share of the total variation (8%) in assessments of informational continuity was at the structural level of municipality. Small municipalities (< 5000 inhabitants) had, on average, better informational continuity compared to larger municipalities (ß = -0.47). CONCLUSIONS: Documentation systems have a limited focus on long-term care needs of older care recipients beyond clinical and medical information. There is a potential for enhanced communication- and care-pathways between GPs, the allotment office and nurses in homecare services. This can support the coordinating role of homecare nurses in ensuring informational continuity for older adults with prolonged and complex care needs and help develop the facilitating role of (electronic) documentation systems.