Autistic traits in youth with familial adenomatous polyposis: A Dutch-Canadian case-control study.

This study investigated the neurodevelopmental impact of pathogenic adenomatous polyposis coli (APC) gene variants in patients with familial adenomatous polyposis (FAP), a cancer predisposition syndrome. We hypothesized that certain pathogenic APC variants result in behavioral-cognitive challenges. We compared 66 FAP patients (cases) and 34 unaffected siblings (controls) to explore associations between APC variants and behavioral and cognitive challenges. Our findings indicate that FAP patients exhibited higher Social Responsiveness Scale (SRS) scores, suggesting a greater prevalence of autistic traits when compared to unaffected siblings (mean 53.8 vs. 47.4, Wilcoxon p = 0.018). The distribution of SRS scores in cases suggested a bimodal pattern, potentially linked to the location of the APC variant, with scores increasing from the 5' to 3' end of the gene (Pearson's r = 0.33, p = 0.022). While we observed a trend toward lower educational attainment in cases, this difference was not statistically significant. This study is the first to explore the connection between APC variant location and neurodevelopmental traits in FAP, expanding our understanding of the genotype-phenotype correlation. Our results emphasize the importance of clinical assessment for autistic traits in FAP patients, shedding light on the potential role of APC gene variants in these behavioral and cognitive challenges.

Health and coping strategies of nursing home residents and their relatives during the COVID-19 pandemic: a mixed-methods study protocol.

INTRODUCTION: The COVID-19 pandemic hit older adults particularly hard, especially those living in nursing homes. The present study's primary aim is to quantify the states of physical and mental health of nursing home residents and their relatives following the implementation of the exceptional confinement measures. The secondary aim is to explore the lived experiences of the stressors perceived by older adults and their relatives, as well as the support strategies implemented by health professionals and their results. METHODS AND ANALYSIS: We chose a mixed-methods (quantitative/qualitative) study to best deliver a profound understanding of this phenomenon.Quantitative phase: participants are asked to complete several questionnaires. The study population includes all the nursing home residents in four French-speaking cantons of Switzerland (and their relatives) who are living through the COVID-19 pandemic. Descriptive statistics will be calculated for the scores of the General Health Questionnaire-12, Impact of Event Scale-6, Perceived Stress Scale, Brief Cope, Post-traumatic Growth Inventory, World Health Organization Quality of Life-BREF (WHOQOL-BREF) and WHOQOL-OLD scales. Correlational analyses will be considered.Qualitative phase: data are collected from several sources (individual semi-structured interviews, focus groups, field notes). Interviews are planned with about 12 representatives of each group of participants (residents and relatives). Two focus groups made up of healthcare professionals will be constituted to explore the lived experiences of the stressors perceived by residents and relatives, the coping strategies those two groups implemented to deal with them. The interviews and focus groups will be subjected to a thematic contents analysis.Integrating the quantitative and qualitative data will take place jointly with data interpretation. ETHICS AND DISSEMINATION: This project was approved by the Human Research Ethics Committee of the Canton of Vaud on 14 December 2020 (project ID: 2020-02397). The prior written informed consent of the study subjects is collected by a member of the research team before data collection. Study results will be disseminated via professional and peer-reviewed publications. TRIAL REGISTRATION NUMBER: ISRCTN12345167.

Scope of nursing practice on a surgery ward: A time-motion study.

AIM: To log the activities of registered nurses and nursing assistants on a visceral surgery ward. BACKGROUND: By prioritizing their activities, nurses fail to exercise their full scope of practice even though this is essential for health care systems to function effectively and efficiently. METHOD: A descriptive observational time-motion study was conducted over a period of 48 days. The activities of nurses (n = 24) and nursing assistants (n = 9) were logged over the course of their entire work shifts, both in the day and at night. RESULTS: In all, 499 hr of observation were logged. Tasks that fell under the dimensions of care activities and of communication and care coordination, which cover documentation, non-care activities and delegated medical tasks, were the ones that took up most of the nurse work time. Patient assessment, relational care, therapeutic teaching/coaching, and knowledge updating and utilization were categories that nurses were under-engaged in. CONCLUSION: The study shows that the scope of nursing practice was not optimal. IMPLICATION FOR NURSING MANAGEMENT: The results can serve to improve the work environment of carers, optimize the use of human resources and increase the visibility and efficiency of nursing work.

Integration of family caregivers in delirium prevention care for hospitalized older adults: A case study analysis.

AIM: To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. DESIGN: Multiple case study. METHODS: The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 - April 2018 through various instruments, including semi-structured interviews and family caregiver logs. Within- and across-case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore-Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). RESULTS: Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. CONCLUSION: The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. IMPACT: Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient- and family-centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.

Fondamentaux des soins : un cadre et un processus pratique pour répondre aux besoins physiques, psychosociaux et relationnels des personnes soignées.

Since 2008, an international group has been helping to promote a better response to the fundamental needs of individuals receiving care. This group provides a framework on the fundamentals of care that focuses on the relationship between the nurse, the individual being cared for, and his or her relatives, as well as on the response to the patient’s physical, psychosocial, and relational needs. A practice process supports the concrete application of this framework. The purpose of this discursive article is to present the French translation of the Fundamentals of Care Framework and its Practice Process. To begin with, the translation process will be briefly explained. Next, the Fundamentals of Care Framework and the stages in its Practice Process will be presented. To help the reader better understand the proposal, a clinical illustration will be used to present the situation of Mr. Perron, who is living with Alzheimer’s disease, and his spouse, who is his family caregiver. Finally, the article discusses the usefulness of the Fundamentals of Care Framework and its Practice Process in terms of the four main areas of the discipline of nursing : practice, management, training, and research. This article paves the way for the development of knowledge on the fundamentals of care in the French-speaking world.

Understanding the integration of family caregivers in delirium prevention care for hospitalized older adults: A case study protocol.

AIM: To understand family caregiver involvement in delirium prevention care for older adults hospitalized for orthopaedic surgery hospitals and family caregiver integration by nurses. DESIGN: Multiple-case study. METHODS: The model of Care Partner Engagement was selected as theoretical framework. Eight cases will comprise an older adult hospitalized a family caregiver and a ward nurse. They will be recruited with a non-probability sampling on two orthopaedic surgery wards in two hospitals. Semi-structured interviews with participants will be audiotaped. Sociodemographic data will be collected. These data, researcher field notes and interview transcripts will be subjected to within- and across-case thematic analysis. Regional ethics committee approved the study protocol in August 2018. DISCUSSION: The study will allow surgical nursing teams to gain a better understanding of the issues and possibilities regarding family caregiver integration in delirium prevention care for older adults.

Factors influencing the quality of life perceptions of cognitively impaired older adults in a nursing home and their informal and professional caregivers: a mixed methods study.

BACKGROUND: Identifying the objective and subjective aspects of the quality of life (QoL) of institutionalized cognitively impaired older adults (CIOAs) is a challenge. However, it can reveal which aspects of their care require improvement. AIM: The aim of this study was to identify the core aspects of the QoL of CIOAs living in a nursing home (NH) by involving informal and professional caregivers (PCs). METHODS: Our sequential, mixed methods study exploring the QoL of CIOAs was based on Lodgson et al's (2002) quantitative quality of life-Alzheimer's disease (QoL-AD) questionnaire. Subsequently, a qualitative phase study analyzed perceptions and impressions of QoL using interviews of CIOAs and their most significant informal caregivers (SICs) and PCs. RESULTS: Fifteen CIOAs, 12 SICs, and 2 PCs were recruited. Two-thirds of the older adults were females, overall average age was 86 years (SD=6.1), and all had a severe clinical dementia rating (CDR=3). A high level of comorbidity (measured using the Cumulative Illness Rating Scale for Geriatrics) was significantly associated with a lower QoL-AD score (P=0.046). Higher numbers of visits by SICs or family members had a positive effect on QoL-AD scores (P=0.036). No significant differences were found in overall QoL-AD scores as rated by CIOAs, SICs, and PCs (P=0.080). Combining quantitative and qualitative data analyses revealed four significant themes influencing the QoL of CIOAs: 1) human dignity and acceptance; 2) development and existence; 3) functionality and health; and 4) recognizability and safety. CONCLUSION: Sequentially using mixed methods proved an appropriate way to examine the QoL of severe CIOAs living in an NH, and these results were compared with the perceptions of informal and PCs. The factors optimizing overall health were visits by SICs and family members, and the major aspect that increases the QoL was freedom of movement inside and outside the NH.

[Evidence of lack of agreement between hemodialysis patients and nurses on presence and severity of symptoms.] / Évidence d'un manque de concordance entre les patients hémodialysés et les infirmières sur la présence et la sévérité des symptômes.

Hemodialysis patients constitute a vulnerable population whose quality of life is affected by the many symptoms (e.g., pain, fatigue) they experience. The presence and severity of these symptoms are significantly under-assessed by health professionals. The purpose of this study was to describe and compare the symptoms perceived by hemodialysis patients versus those detected by nurses. A total of 123 patients and 70 nurses working in six hemodialysis centers were included in the study. The results show that participating nurses detected less than 50% of the symptoms perceived by patients. Agreement between hemodialysis patients and nurses regarding symptom presence and severity was slight to fair at best (kappa < 0.47). This suggests that improving the knowledge and skills of hemodialysis nurses for detecting the symptoms of the patients in their care could go a long way toward intervening more efficiently and improving the quality of the care they offer.

Acceptability Among Community Healthcare Nurses of Intelligent Wireless Sensor-system Technology for the Rapid Detection of Health Issues in Home-dwelling Older Adults.

BACKGROUND: The effective care and support of community healthcare nurses (CHNs) contribute greatly to the healthy aging of older adults living at home. Integrating innovative technologies into CHNs' daily practice offers new opportunities and perspectives for early detection of health issues and interventions among home-dwelling older adults. AIM: To explore the perception of acceptability among CHNs of an intelligent wireless sensor system (IWSS) for use in daily practice for the detection of health issues in home-dwelling older adults receiving home healthcare. METHOD: Descriptive and qualitative data were sourced from a pilot randomized controlled trial involving 17 CHNs using an IWSS in their daily practice to rapidly detect falls and other health issues in patients' homes. IWSS alerts indicating behavior changes were sent to CHNs. Their perceived usefulness (PU) and perceived ease of use (PEOU) were assessed. The acceptability of IWSS technology was explored using a questionnaire and focus group discussions. RESULTS: The PU and PEOU of the IWSS technology were low to moderate. A majority of the CHNs were dissatisfied with its performance and intrusiveness; they reported multiple obstacles in the usefulness and ease of use of the IWSS technology in daily practice. CONCLUSION: To improve the IWSS technology's low to moderate acceptability among CHNs, we recommend a more user-centered implementation strategy and an embedded model of nursing care.

Acceptability of an intelligent wireless sensor system for the rapid detection of health issues: findings among home-dwelling older adults and their informal caregivers.

BACKGROUND: Aging at home rather than in an institution is now considered the gold standard. Public health figures document an important demographic transition to an increasingly elderly society. At the same time, this is accompanied by the emergence of significant numbers of innovative technologies to help and support home-dwelling older adults in declining health who wish to remain at home. STUDY AIM: To explore the acceptability of intelligent wireless sensor system (IWSS) among home-dwelling older adults in rapidly detecting their health issues. METHODS: Data were sourced from a pilot 3-month randomized clinical trial that involved 34 older patients in the experimental group (EG) using an IWSS to rapidly detect falls and other health issues at home. The effectiveness of the IWSS was assessed by comparing it to participants' functional and cognitive status, as measured both before and after the trial. The Resident Assessment Instrument for Home Care, Confusion Assessment Method, Cognitive Performance Scale, Geriatric Depression Scale, and Informed Questionnaire on Cognitive Decline in the Elderly were used for the assessments. Acceptability of the IWSS was explored at the end of the study. RESULTS: Both older adults and their informal caregivers considered the performance and usefulness of the IWSS intervention to be low to moderate. A majority of the participants were unsatisfied with its ease of use and found multiple obstacles in using and having an intention to use the IWSS. However, their informal caregivers were more satisfied with the program and gave higher scores for usefulness, ease of use, and intention to use IWSS technology. CONCLUSION: The IWSS displayed low-to-moderate acceptability among the older participants and their informal caregivers. We recommend improving and clarifying several components in the IWSS for the development of a design that is user-centered.

The Senior Living Lab: an example of nursing leadership.

The Senior Living Lab (SLL) is dedicated to the care of older adults and exemplifies how nursing leadership can influence clinical practice by designing research models capable of configuring interdisciplinary partnerships with the potential of generating innovative practices and better older patient outcomes. Demographic change resulting in growing numbers of older adults requires a societal approach, uniting stakeholders in social innovation processes. The LL approach is an innovative research method that values user perceptions and participation in the cocreation of new products and services. The SLL is crafting a platform responsive to change. It is a learning organization facilitating community-based participatory research methods in the field. Advanced nurse practitioners are well positioned to lead the way forward, fostering interdisciplinary academic collaborations dedicated to healthy aging at home. The SLL demonstrates how nursing science is taking the lead in the field of social innovation.

[The French version of Symptom Management Theory and its application]. / Version Française de la Théorie de Gestion des Symptômes (TGS) et son application.

Patients with chronic diseases remain a challenge for patient centered care in terms of symptom management. In advancing the nursing profession in this respect, organizing and providing such care in a structured and systematic way benefits from being grounded in a sound theoretical framework. Since 1994, University of California in San Francisco's Symptom Management Theory (SMT) holds promise to provide such theoretical foundation. This paper aims at presenting a French version of the SMT, the "théorie de gestion des symptômes (TGS)" as well as at discussing its application in research and practice. The paper illustrates how different concepts of SMT interrelate for different symptoms or symptom clusters in light of the current state of knowledge. Furthermore, a selection of symptom assessment scales available in French are presented to inform practice, education and research. We believe that providing a French version of the SMT will foster a systematic and structured development of symptom management in nursing practice and research in francophone regions or countries.