The role of critical care nurses in organ and tissue donation: A position statement of the Australian College of Critical Care Nurses.

INTRODUCTION: Australian organ and tissue donation rates are low compared to other countries. Acknowledging that donation practices vary across Australia, the Australian College of Critical Care Nurses supported the development of a position statement to explicate critical care nurses' role in supporting organ and tissue donation. Several Australian peak professional organisations provide guidance to inform and support organ and tissue donation. AIM: The aim of this study was to develop a position statement using contemporary Australian research evidence to build upon and complement existing guidance, focussing on the role of critical care nurses in organ and tissue donation in Australian critical care. METHOD: An approach similar to a rapid review was used, providing a streamlined approach to synthesising evidence. A comprehensive search using Medical Subject Headings, keywords, and synonyms was undertaken using Medline and CINAHL Complete via EBSCOhost to identify peer-reviewed Australian research evidence about critical care nurses' role, obligations, expectations, and scope of practice during organ and tissue donation. Narrative synthesis was used to synthesise the research evidence. FINDINGS: The importance of separating death from organ donation in discussions with family, the timing and the approach to organ donation conversations, and working in collaboration with the DonateLife Donation Specialist Nurses were identified. The importance of understanding family perspectives, caring for families, and collegial support for critical care clinicians were also identified. With the guidance of peak professional organisations, the research evidence was then used to develop practice recommendations for critical care units, leaders, and critical care nurses. DISCUSSION AND CONCLUSION: The recommendations explicate the important contribution critical care nurses can make to ensuring timely, sensitive communication, providing high-quality end-of-life care, supporting families irrespective of the donation decision and supporting colleagues from the wider critical care team, thereby optimising the processes related to organ and tissue donation in Australian critical care settings.

Detecting and preventing child maltreatment in primary care and PHNs' role-a cross-sectional study.

BACKGROUND: Child maltreatment is a global problem that puts children at risk of mental illness, substance abuse, and premature death. Interdisciplinary collaboration is important in preventing and detecting child maltreatment. In Norway, children undergo universal preventive health assessments and receive complimentary follow-up care from specialized public health nurses in child and family health clinics. These nurses conduct regular check-ups and home visits to monitor children for signs of maltreatment. OBJECTIVE: The objective of this study is to describe how public health nurses at child and family health clinics follow the National Clinical Guidelines to prevent and detect child maltreatment, with a particular focus on clinical procedures and interdisciplinary collaboration. Furthermore, we aim to determine factors that are associated with identification of child maltreatment. DESIGN: A cross-sectional online survey was conducted among public health nurses working in primary care between October 24th and December 31st, 2022. Public health nurses who worked with children aged 0-5 years and had consultations with families were eligible to participate, resulting in 554 responses. The study employed descriptive analysis, including frequency, percentage and mean, as well as a two-step logistic regression analysis. The study was approved by the relevant authority, and informed consent was obtained through questionnaire completion. RESULTS: The public health nurses in this study displayed strong adherence to the guidelines and utilized various comprehensive assessment procedures to monitor child well-being, growth, and development. However, there was limited and infrequent collaboration with other professionals, such as child protection services, general practitioners, and hospitals. Most public health nurses reported occasional suspicion of child maltreatment, with age and years of experience in child and family clinics influencing these suspicions. Older public health nurses were more likely to suspect physical violence, while those with less than two years of experience reported less experience in suspecting maltreatment. Additional education increased the probability of suspecting sexual violence. CONCLUSIONS: This study provides insights into the practices of public health nurses in Norway regarding the detection and prevention of child maltreatment in child and family clinics. While adherence to guidelines is strong, suspicion of maltreatment is relatively rare. Collaboration across agencies is crucial in addressing child maltreatment. Age and experience may influence the detection of maltreatment. Improved collaboration, targeted guidelines, and ongoing professional development are needed to enhance child protection.

Failed implementation of a nursing intervention to support family caregivers: An evaluation study using Normalization Process Theory.

AIM: To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT). DESIGN: An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes. METHODS: Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its 'normalization', consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring. RESULTS: Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice. Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages. Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload. Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation. CONCLUSION: Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study. IMPACT: What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care. What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment. Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders. REPORTING METHOD: This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public involved. TRIAL REGISTRATION: The trial was prospectively registered on the Dutch Trial Register (NL7702).

Willingness to support neighbours practically or emotionally: a cross-sectional survey among the general public.

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness. Design: We applied a cross-sectional survey design. Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner. Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying. Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

How does a nursing crisis management intervention impact relatives' experiences in two trauma centres? A time-series study.

Background: Being a relative to a trauma patient may be a dramatic experience. Often, trauma centre nurses do not feel they have the competences needed to meet relatives experiencing a crisis. Therefore, a need exists to enhance their crisis management competencies. Objective: To investigate relatives' experiences of a nursing crisis management intervention on information, inclusion and support, including the importance of these needs in two Danish trauma centres. Design: A prospective intervention study based on interrupted time series. The intervention, conducted in 2020-2021, consisted of a crisis management training programme. Settings: The Trauma Centre of the Aarhus University Hospital and Aalborg University Hospital in Denmark. Participants: Relatives (18+ years) of critically ill or injured patients (n = 293). Methods: Data were collected using a 32-item questionnaire. The primary outcome was relatives' overall experience of the quality of the information, inclusion and support measured on a visual analogue scale (VAS) (0-10). Secondary outcomes were changes in risk ratios and scores between the periods for each of the three main variables. The outcome was measured as weighted and non-weighted scores, taking into account the importance of each variable. Besides use of interrupted time series, predictive and weight-adjusted analyses were performed. Time series comprised a before-period (6 months), an implementation period (3 months) and an after-period (6 months). Due to ceiling effect, the predictive analysis was dichotomized using the median scores for information, inclusion and support. Results: Overall, no differences were observed between the participants' characteristics in each of the three periods. Comparing the implementation period with the after-period revealed a statistically significant positive difference between the relatives' assessment of crisis management [p = 0.009]. Additionally, the probability of scoring >8 from before to after the intervention increased statistically significantly [Risk ratio 1.21, 95 % confidence interval 1.16-1.27]. The secondary outcomes showed that the greatest change over time was inclusion of relatives [Risk ratio, 1.25 95 % confidence interval 1.15-1.35]. Information had the greatest effect on relatives' experience of nurses' provision of crisis management and was also the needs area that relatives considered most important. However, information was also the needs area that evolved least during the study. Conclusions: Based on the selected cut-off levels, the intervention appeared to have a positive effect on relatives' experiences - especially inclusion of relatives. In the weighted analyses, information was considered most important and also had the greatest effect on relatives' overall experience. Nurses' crisis management competencies should be prioritized in trauma centres.

Availability of family care resources, bathing assistance and toileting assistance among older adults with functional limitations: an evidence-based study from China.

BACKGROUND: An aging population has contributed to an increasing prevalence of functional limitations among older adults. Family support plays a crucial role in toileting and bathing assistance. Yet, the relationship between availability of family care resources and such actual assistance remains insufficiently explored. Our study aims to describe availability of family care resources and identify the association between availability of family care resources and toileting assistance or bathing assistance. METHODS: This study employed a cross-sectional analysis of data from the 2018 National Survey of the China Health and Retirement Longitudinal Study (CHARLS). The availability of family care resources was assessed using measurements of spouse availability, adult child availability, and living arrangement. Bathing assistance and toileting assistance were measured based on self-reported receipt of such assistance. Descriptive statistics were used to depict the overall and subgroup situation of availability of family care resources. Multivariable logistic models were employed to investigate the relationship between availability of family care resources and the receipt of toileting assistance or bathing assistance. RESULTS: Among the sample of older adults with functional limitations, 69% had a spouse, 63% had at least one adult child, and 80% resided with family members. Among those with bathing disability, 13% reported lacking bathing assistance, and among those with toileting disability, 54% reported lacking toileting assistance. Participants with 1-2 adult children had lower odds of receiving toileting assistance (OR: 0.28, 95% CI: 0.09, 0.91, p= 0.034) compared to those with three or more adult children. Spouse availability and living arrangement did not exhibit statistically significant associations with toileting assistance. Participants without a spouse had lower odds of receiving bathing assistance (OR: 0.27, 95% CI: 0.09-0.78, p= 0.016) in comparison to those with a spouse; however, adult child availability and living arrangement did not display statistically significant associations with bathing assistance. CONCLUSION: The present findings suggest a gap in family commitment when it comes to assisting older adults with functional limitations in bathing/toileting. To address this, policymakers are encouraged to prioritize the implementation of proactive mechanisms for identifying family caregivers, alongside incentives to enhance their engagement in practical caregiving activities. Furthermore, it is crucial to emphasize the prioritization of affordable and easily accessible formal toileting/bathing assistance options for older adults who lack sufficient family care resources.

Utilization of the Keeping Hope Possible Toolkit with parents of children with life limiting and life threatening illnesses during the COVID-19 pandemic: Exploring pediatric nurses and allied healthcare provider opinions.

BACKGROUND: For families with children diagnosed with complex illnesses, the COVID-19 pandemic added many challenges. In order to mitigate inevitable disruptions in pediatric care settings, caregivers may need added supports and resources. The Keeping Hope Possible (KHP) Toolkit is a self-administered intervention intended to enhance caregiving experiences of parents with a child with multiple needs. However, little is known about effectively disseminating the Toolkit. PURPOSE AND METHODS: A qualitative, thematic analysis was conducted to explore the opinions and perceptions of pediatric nurses and allied healthcare providers (HCPs) in relation to the dissemination and use of the KHP Toolkit for use by families with complex medical needs. Structured interview data were analyzed from a sample of seven pediatric HCPs working in various care settings in one Canadian province. FINDINGS: Five themes were developed including: Recognising Importance of the KHP Toolkit; Needing Support and Direction; Implementation and Use of the KHP Toolkit; Realizing Important Considerations for Success; and, Emphasizing Connection through Isolated Times. DISCUSSION: Participants recognized the importance of the KHP Toolkit for parents and extended family in a variety of settings to encourage self-care, daily structure, and connectedness. Thus, pediatric nurses' awareness and openness to the initial dissemination of the Toolkit is essential, and a subsequent interprofessional team approach will ensure consistent reminders and support for families. APPLICATION TO PRACTICE: Careful assessment of family readiness for learning about and using the KHP Toolkit is essential, along with an interprofessional approach to consistent inquiry and support at each family encounter.

Social difficulties and care burden of adult Duchenne muscular dystrophy in Japan: a questionnaire survey based on the Japanese Registry of Muscular Dystrophy (Remudy).

BACKGROUND: Little is known about the social difficulties and health care needs of adult Duchenne muscular dystrophy (DMD) patients in Japan, as well as the financial and physical stress experienced by their caregivers. This study aimed to clarify the social circumstances surrounding adult DMD patients and assess the degree of involvement of family members in their care and the associated economic burden of the disorder in Japan. METHODS: Adult DMD patients were identified through the Registry of Muscular Dystrophy (Remudy) in Japan and invited to complete a questionnaire together with a caregiver. Data on health care use, quality of life, work status, informal care, and household expenses were collected to estimate the costs associated with DMD from social and caregiver household perspectives. RESULTS: In total, 234 (63.7%) of 367 adult DMD patients (mean age, 27.4 ± 6.0; range, 20-48 years) completed the questionnaire. Of these, 38 (21%) had developmental disorders (mental retardation, autism, and learning disorders), 57 (33%) experienced bullying in school, and 44 (77%) indicated the reason for bullying to be their physical handicap. Employment histories were noted by 72 (31%), although 23 (10%) lost their jobs mainly due to physical difficulties. Of the 234 patients, 164 (74%) lived with their relatives, and 78% of care time was supplied by family members, in particular, their mothers. The mean rate of care work provided by family members was 81%. Household income of families with an adult DMD patient was lower, whereas the rate of living with parent(s) and grandparent(s) was higher, in comparison with the general Japanese population. CONCLUSIONS: Adult DMD patients in Japan experience many social difficulties from childhood up to adulthood. As adults, many DMD patients experience bullying and workplace difficulties. Families were found to provide most of the care and financial support for DMD patients. Our results suggest the need to improve public patient care systems, including financial support, to address the physical and economic burdens of care for adult DMD patients in Japan.

Informal care provided in US nursing homes: Reduced from 2010 to 2021 and lower for Medicaid residents.

BACKGROUND: Little is known about the trend of informal care (unpaid care provided by family or other caregivers) provided to nursing home residents before or during the COVID-19 pandemic. This study assessed this trend during 2010-2021, for all and Medicaid versus non-Medicaid residents. METHODS: Using data from the RAND Health and Retirement Study longitudinal file, our study sample included a total of 2025 resident-years (860 for Medicaid and 1165 for non-Medicaid residents). We fit two-part regression models to determine adjusted trends in average amount of informal care over time, and difference by resident Medicaid status. RESULTS: Informal care received by residents reduced substantially over time, from an average of 39.2 h in the past month of interview in 2010-11 to 23.2 h in 2018-19, and then to 11.2 h in the COVID-19 pandemic (2020-21). The reduced hours were due to both reduced percentages of nursing home residents who received any informal care and reduced hours of care among those who did receive it over time. Multivariable analyses confirmed this trend and similar downward trends for Medicaid versus non-Medicaid residents. Medicaid residents on average received 10.02 fewer hours of informal care per month (95% confidence interval -17.16, -2.87; p = 0.006) than non-Medicaid residents after adjustment for resident characteristics and time trends. CONCLUSION: Informal care provided to nursing home residents during 2010-2021 reduced over time, especially during the COVID-19 pandemic (2020-21). Medicaid residents tended to receive less informal care than non-Medicaid residents.

Investigating Father or Partner Involvement in Family Integrated Care in Neonatal Units: Protocol for a Prospective, Multicenter, Multiphase Study

BACKGROUND: Neonatal unit (NU) admissions for premature babies can last for months, which can significantly impact parental mental health (MH) with symptoms of depression, stress, and anxiety. Literature suggests fathers experience comparable MH symptoms to mothers. Family integrated care (FICare) is a culture where parents are collaborators and partners in caring for their hospitalized newborns. FICare improves infant outcomes and maternal MH. Similar reports on fathers are limited. OBJECTIVE: The primary aim of this study is to investigate the impact of supporting father or partner engagement in FICare of preterm infants on their MH up to 6 weeks postdischarge. The secondary aim is to investigate the impact on maternal MH. METHODS: This is a 2-phase study: phase 1 to gather baseline information and phase 2 to assess the impact of enhanced father or partner engagement in FICare on their MH, involving 2 NUs (tertiary and level 2). Enhanced FICare will be developed and introduced (eg, information booklet, workbook, classes, and a father peer-support group) alongside standard FICare practices. Father or partner MH will be assessed with semistructured qualitative interviews and validated questionnaires: Generalized Anxiety Disorder Assessment, Patient Health Questionnaire, and Parental Stressor Scale: Neonatal Intensive Care Unit from NU admission to 6 weeks postdischarge. Mothers will be assessed by focus groups and the same questionnaires. Descriptive statistics and appropriate comparative tests, such as the 2-tailed t test, will be used to analyze and compare phase 1 and 2 data. Qualitative data will be coded line by line with the use of NVivo (Lumivero) and thematically analyzed. Simultaneously, systematic reviews (SRs) of fathers' experiences of FICare and their MH outcomes will be conducted. The study was approved by the National Research Ethics Committee (22/EM/0140) in August 2022. A parent advisory group was formed to advise on the study methodology, materials, involvement of participant parents, and dissemination of study findings. RESULTS: A recent SR demonstrated that data saturation is likely to be achieved by interviewing 9 to 17 participants. We will study a maximum of 20 parents of infants born at less than 33 weeks' gestation in each phase. As of October 2023, the study was ongoing. The SR studies are registered with the PROSPERO database (324275 and 306760). The projected end date for data collection is July 2024; data analysis will be conducted in November 2024 and publication will occur in 2025. CONCLUSIONS: The study aims to demonstrate the feasibility of using a father or partner-sensitive FICare model for parents of premature babies with a positive impact on their MH. It will demonstrate the feasibility of providing FICare to extremely premature babies receiving intensive care. This study may support the development of inclusive FICare guidelines for nonbirthing parents and their extremely premature infants. TRIAL REGISTRATION: ClinicalTrials.gov: NCT06022991; https://classic.clinicaltrials.gov/ct2/show/NCT06022991. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/53160.

Caring for older parents in Norway - How does it affect labor market participation and absence from work?

As the population ages, younger generations will increasingly be called upon to provide informal care to their aging parents. To prepare for this development, it is essential to understand how employees combine the dual responsibilities of work and caring for aging parents. By analyzing data collected in Norway in 2022 from a nationally representative sample of 6049 respondents, aged 35 to 67, we investigated how caring for older parents affects labor market participation and work absence. We provide descriptive statistics and conduct analyses with structural equation modeling. These analyses indicated that caregiving had no substantial impact on overall participation in the workforce. However, employees did use work absences to assist their parents. We differentiate between using holidays, compensatory time, and three types of formal leave: paid, unpaid, and sick leave. More than a third of the formal leave was taken as sick leave. Women were moderately more likely to use work absence to care for their parents. We conclude that caregiving for older parents currently has little effect on work participation in Norway and attribute the favorable situation in Norway to its comprehensive public elderly care system. However, a contributing factor is Norway's generous sick leave policy. Although intended for use when employees are sick themselves, sick leave is used by employees to provide care to aging parents. Sick leave seems to act as a safety valve. To mitigate the effects of informal care on work participation, welfare states may create conditions that allow employees to combine work and informal care without resorting to unauthorized sick leave. A solution could be to extend the existing support scheme for employees with young children to those providing care for their aging parents.

'Moving on' for Adults With a Learning Disability and Their Families: A Constructivist Grounded Theory Study.

Ending familial co-residence, termed 'moving on' by participants, is an increasingly relevant life transition for people with a learning disability due to increasing life expectancy and policy developments. Nevertheless, there is an absence of research exploring this transition experience in a United Kingdom (UK) context. This constructivist grounded theory study therefore aimed to explore, conceptualise, and theorise the 'moving on' experiences of adults with a learning disability and their families. This article reports the experiences of five adults with a learning disability and nine family members in England, UK. Narrative interviews and creative storybook methods were used to collect data between April 2015 and May 2016. Constant comparative methods, theoretical sampling, and memo writing were used throughout data collection and analysis. Participants with a learning disability presented personal growth and greater life fulfilment over the course of the transition; they flourished. In parallel, family members relinquished their care responsibilities. Importantly, the iterative and reciprocal relationship between flourishing and relinquishing shows that ongoing family member involvement is crucial during and following relocation. Family members identified factors that potentially inhibit relinquishing: pressure to 'let go', different perceptions of independence between family members and service providers, inadequate future investment, and rapport with professional carers. These novel insights led to the generation of the first known mid-range theory concerning this transition, entitled 'Moving on: flourishing and relinquishing'. Findings will guide future research in this field and facilitate the design of appropriate support for people with a learning disability and their families.

Affiliate stigma and caregiver burden in parents of children with epilepsy.

Objective: This study aimed to investigate the current status of affiliated stigma and caregiver burden among parents of children with epilepsy, analyze their correlation, and identify factors influencing affiliated stigma. Methods: A cross-sectional survey was conducted among 194 parents of children with epilepsy who met the inclusion and exclusion criteria in Shenzhen City, Guangdong Province, China. Data were collected through questionnaires, including a demographic information sheet, an affiliated stigma scale, and a caregiver burden scale. Results: The results revealed that parents of children with epilepsy experienced a moderate level of affiliated stigma, with an average score of 54.92 ± 10.44. Similarly, caregiver burden scores fell within the moderate range, with an average score of 44.14 ± 16.02. Factors influencing affiliated stigma scores included the frequency of epileptic seizures in children, the types of anti-epileptic medications taken by children, and the place of residence. The total caregiver burden score and scores in various dimensions (emotional, cognitive, and behavioral) of caregivers for epilepsy patients were positively correlated with the affiliated stigma score. Affiliated stigma was found to independently explain 21.3 % of the variation in caregiver burden. Conclusion: In the future, healthcare professionals should develop targeted interventions for children with epilepsy and their parents to reduce affiliated stigma, decrease caregiver burden, and enhance the caregiving capabilities of parents of children with epilepsy. These measures are essential to improve the overall well-being of both parents and children affected by epilepsy.

Asthma Academy for Family Caregivers: A Quality Improvement Project.

Background: Asthma affects one in every 12 children in United States with significant prevalence in underserved groups. Family caregiver education is essential to improve childhood asthma control. The literature suggests that family caregivers' lack of knowledge about asthma management affects their children's health outcomes. An evidence-based education program that improves caregivers' asthma knowledge may improve the family's well-being. Objectives: The goal of the Asthma Academy project is to improve the disease management of children with asthma by providing an in-person family caregiver education program. The main objectives are to (a) improve family caregivers' asthma knowledge, (b) enhance their confidence in asthma management, and (c) evaluate caregivers' satisfaction with the education program. Method: This quality improvement project used an in-person educational program with an asthma education video resource for caregivers of children with asthma. Results: The family caregivers' asthma knowledge improved significantly after the education. The confidence levels in caring for children with asthma increased. Caregivers' satisfaction with the Asthma Academy education session was favorable. Conclusions: The Asthma Academy was an acceptable and effective delivery method of education for family caregivers of children with asthma in the in-patient setting. Empowering family caregivers of vulnerable children through asthma education may improve child health outcomes and mitigate complications from asthma. Implications for Nursing Nurses and clinicians are steward of providing patient education. Individualized, patient-tailored education is recommended.

Encuesta nacional sobre cambios en las políticas de comunicación, visitas y cuidados al final de la vida en las unidades de cuidados intensivos durante las diferentes olas de la pandemia de COVID-19 (estudio COVIFAUCI) / National survey on changes in visitation, communication and end-of-life care policies in intensive care units through the different COVID-19 pandemic's waves (COVIFAUCI study)

Introducción La pandemia derivada de la infección por SARS-CoV-2 propició cambios en los cuidados tanto a familiares como a pacientes de cuidados intensivos durante las diferentes olas de incidencia del virus. La línea de humanización seguida por la mayoría de los hospitales se vio gravemente afectada por las restricciones aplicadas. Como objetivo, planteamos conocer las modificaciones experimentadas durante las diferentes olas de la pandemia por SARS-CoV-2 en España respecto a la política de visitas a los pacientes en UCI, el acompañamiento al final de la vida, y el uso de las nuevas tecnologías de la comunicación entre familiares, pacientes y profesionales. Métodos Estudio descriptivo transversal multicéntrico mediante encuesta a las UCI españolas desde febrero a abril de 2022. Se realizaron métodos de análisis estadísticos a los resultados según lo apropiado. El estudio fue avalado por la Sociedad Española de Enfermería Intensiva y Unidades Coronarias. Resultados Respondieron un 29% de las unidades contactadas. Los minutos de visita diarios de los familiares se redujeron drásticamente de 135 (87,5-255) a 45 (25-60) en el 21,2% de las unidades que permitían su acceso, mejorando levemente con el paso de las olas. En el caso de duelo, la permisividad fue mayor, aumentando el uso de las nuevas tecnologías para la comunicación paciente-familia en el caso del 96,5% de las unidades. Conclusiones Las familias de los pacientes ingresados en UCI durante las diferentes olas de la pandemia por COVID-19 han experimentado restricciones en las visitas y cambio de la presencialidad por técnicas virtuales de comunicación. Los tiempos de acceso se redujeron a niveles mínimos durante la primera ola, recuperándose con el avance de la pandemia pero sin llegar nunca a los niveles iniciales... (AU)

Introduction The pandemic derived from the SARS-CoV-2 infection led to changes in care for both relatives and intensive care patients during the different waves of incidence of the virus. The line of humanization followed by the majority of the hospitals was seriously affected by the restrictions applied. As an objective, we propose to know the modifications suffered during the different waves of the SARS-CoV-2 pandemic in Spain regarding the policy of visits to patients in the ICU, monitoring at the end of life, and the use of new technologies of communication between family members, patients and professionals. Methods Multicenter cross-sectional descriptive study through a survey of Spanish ICUs from February to April 2022. Statistical analysis methods were performed on the results as appropriate. The study was endorsed by the Spanish Society of Intensive Nursing and Coronary Units. Results Twenty-nine percent of the units contacted responded. The daily visiting minutes of relatives dropped drastically from 135 (87.5-255) to 45 (25-60) in the 21.2% of units that allowed their access, improving slightly with the passing of the waves. In the case of bereavement, the permissiveness was greater, increasing the use of new technologies for patient-family communication in the case of 96.5% of the units. Conclusions The family of patients admitted to the ICU during the different waves of the COVID-19 pandemic have suffered restrictions on visits and a change from face-to-face to virtual communication techniques. Access times were reduced to minimum levels during the first wave, recovering with the advance of the pandemic but never reaching initial levels. Despite the implemented solutions and virtual communication, efforts should be directed towards improving the protocols for the humanization of healthcare that allow caring for families and patients whatever the healthcare context. (AU)

Who is supporting the parents during their child's cancer treatment? A qualitative study through the lens of compassion.

PURPOSE: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided. METHODS: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data. RESULTS: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals. CONCLUSION: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.

Family-Oriented Therapeutic Conversations: A Systematic Scoping Review.

There is increasing evidence that highlights the benefits of Family-oriented Therapeutic Conversations (FAM-TC) for the patient and the family; however, studies show variability regarding the content and the way these interventions are offered. This may hamper its further development in clinical practice. This review systematically maps the available literature on nurse-led FAM-TC and offers a solid synthesis of the characteristic, effectiveness, and feasibility of these interventions. A systematic search in PubMed, CINAHL, Cochrane, Web of Science, PsycINFO, Trip (Turning Research Into Practice), BASE (Bielefeld Academic Search Engine), OATD (Open Access Theses and Dissertations), and ProQuest databases identified 37 studies. The interventions varied in interventionist nurses' profile, the intervention content, or the duration of the sessions offered. Most of the interventions showed beneficial effects on perceived family support and family functioning. This review offers suggestions for future studies, such as the inclusion of specific theoretical frameworks for intervention design, targeting both the patient and the family and offered by nurses with family nursing competency.

Encuesta nacional sobre cambios en las políticas de comunicación, visitas y cuidados al final de la vida en las unidades de cuidados intensivos durante las diferentes olas de la pandemia de COVID-19 (estudio COVIFAUCI) / National survey on changes in visitation, communication and end-of-life care policies in intensive care units through the different COVID-19 pandemic's waves (COVIFAUCI study)

Introducción La pandemia derivada de la infección por SARS-CoV-2 propició cambios en los cuidados tanto a familiares como a pacientes de cuidados intensivos durante las diferentes olas de incidencia del virus. La línea de humanización seguida por la mayoría de los hospitales se vio gravemente afectada por las restricciones aplicadas. Como objetivo, planteamos conocer las modificaciones experimentadas durante las diferentes olas de la pandemia por SARS-CoV-2 en España respecto a la política de visitas a los pacientes en UCI, el acompañamiento al final de la vida, y el uso de las nuevas tecnologías de la comunicación entre familiares, pacientes y profesionales. Métodos Estudio descriptivo transversal multicéntrico mediante encuesta a las UCI españolas desde febrero a abril de 2022. Se realizaron métodos de análisis estadísticos a los resultados según lo apropiado. El estudio fue avalado por la Sociedad Española de Enfermería Intensiva y Unidades Coronarias. Resultados Respondieron un 29% de las unidades contactadas. Los minutos de visita diarios de los familiares se redujeron drásticamente de 135 (87,5-255) a 45 (25-60) en el 21,2% de las unidades que permitían su acceso, mejorando levemente con el paso de las olas. En el caso de duelo, la permisividad fue mayor, aumentando el uso de las nuevas tecnologías para la comunicación paciente-familia en el caso del 96,5% de las unidades. Conclusiones Las familias de los pacientes ingresados en UCI durante las diferentes olas de la pandemia por COVID-19 han experimentado restricciones en las visitas y cambio de la presencialidad por técnicas virtuales de comunicación. Los tiempos de acceso se redujeron a niveles mínimos durante la primera ola, recuperándose con el avance de la pandemia pero sin llegar nunca a los niveles iniciales... (AU)

Introduction The pandemic derived from the SARS-CoV-2 infection led to changes in care for both relatives and intensive care patients during the different waves of incidence of the virus. The line of humanization followed by the majority of the hospitals was seriously affected by the restrictions applied. As an objective, we propose to know the modifications suffered during the different waves of the SARS-CoV-2 pandemic in Spain regarding the policy of visits to patients in the ICU, monitoring at the end of life, and the use of new technologies of communication between family members, patients and professionals. Methods Multicenter cross-sectional descriptive study through a survey of Spanish ICUs from February to April 2022. Statistical analysis methods were performed on the results as appropriate. The study was endorsed by the Spanish Society of Intensive Nursing and Coronary Units. Results Twenty-nine percent of the units contacted responded. The daily visiting minutes of relatives dropped drastically from 135 (87.5-255) to 45 (25-60) in the 21.2% of units that allowed their access, improving slightly with the passing of the waves. In the case of bereavement, the permissiveness was greater, increasing the use of new technologies for patient-family communication in the case of 96.5% of the units. Conclusions The family of patients admitted to the ICU during the different waves of the COVID-19 pandemic have suffered restrictions on visits and a change from face-to-face to virtual communication techniques. Access times were reduced to minimum levels during the first wave, recovering with the advance of the pandemic but never reaching initial levels. Despite the implemented solutions and virtual communication, efforts should be directed towards improving the protocols for the humanization of healthcare that allow caring for families and patients whatever the healthcare context. (AU)

Caregiving experiences of primary family caregivers caring for family members affected by COVID-19 during home isolation: A phenomenology study.

During home isolation due to the coronavirus disease, family caregivers assumed the responsibility of caring for infected family members; however, the full extent of the difficulties and challenges they encountered remains unclear. This study applied a descriptive phenomenology approach, using semi-structured, one-on-one, in-depth interviews to explore the experiences of 16 primary family caregivers during home isolation amid the coronavirus disease. The key themes identified were as follows: (1) protecting family, comprising anxiety over preventing infection and bearing the responsibility of caregiving and a concern about the diagnosis; (2) seeking stability, encompassing the impact of epidemic control policies on daily routines, strategies to overcome obstacles caused by quarantine measures, and gathering resources and receiving support; and (3) reflections on life, including favoring love over discrimination, rediscovering oneself, cherishing family, and acknowledging personal growth and dedication. This study highlights that family members who took on caregiving roles due to obstacles or health risks faced significant pressure to protect their family members during isolation and actively sought professional consultation and acquired caregiving skills to enhance their confidence and adaptability.

Care Partner Engagement in Secure Messaging Between Patients With Diabetes and Their Clinicians: Cohort Study.

BACKGROUND: Patient engagement with secure messaging (SM) via digital patient portals has been associated with improved diabetes outcomes, including increased patient satisfaction and better glycemic control. Yet, disparities in SM uptake exist among older patients and racial and ethnic underserved groups. Care partners (family members or friends) may provide a means for mitigating these disparities; however, it remains unclear whether and to what extent care partners might enhance SM use. OBJECTIVE: We aim to examine whether SM use differs among older patients with diabetes based on the involvement of care partner proxies. METHODS: This is a substudy of the ECLIPPSE (Employing Computational Linguistics to Improve Patient-Provider Secure Emails) project, a cohort study taking place in a large, fully integrated health care delivery system with an established digital patient portal serving over 4 million patients. Participants included patients with type 2 diabetes aged ≥50 years, newly registered on the patient portal, who sent ≥1 English-language message to their clinician between July 1, 2006, and December 31, 2015. Proxy SM was identified by having a registered proxy. To identify nonregistered proxies, a computational linguistics algorithm was applied to detect words and phrases more likely to appear in proxy messages compared to patient-authored messages. The primary outcome was the annual volume of secure messages (sent or received); secondary outcomes were the length of time to the first SM sent by patient or proxy and the number of annual SM exchanges (unique message topics generating ≥1 reply). RESULTS: The mean age of the cohort (N=7659) at this study's start was 61 (SD 7.16) years; 75% (n=5573) were married, 15% (n=1089) identified as Black, 10% (n=747) Chinese, 12% (n=905) Filipino, 13% (n=999) Latino, and 30% (n=2225) White. Further, 49% (n=3782) of patients used a proxy to some extent. Compared to nonproxy users, proxy users were older (P<.001), had lower educational attainment (P<.001), and had more comorbidities (P<.001). Adjusting for patient sociodemographic and clinical characteristics, proxy users had greater annual SM volume (20.7, 95% CI 20.2-21.2 vs 10.9, 95% CI 10.7-11.2; P<.001), shorter time to SM initiation (hazard ratio vs nonusers: 1.30, 95% CI 1.24-1.37; P<.001), and more annual SM exchanges (6.0, 95% CI 5.8-6.1 vs 2.9, 95% CI 2.9-3.0, P<.001). Differences in SM engagement by proxy status were similar across patient levels of education, and racial and ethnic groups. CONCLUSIONS: Among a cohort of older patients with diabetes, proxy SM involvement was independently associated with earlier initiation and increased intensity of messaging, although it did not appear to mitigate existing disparities in SM. These findings suggest care partners can enhance patient-clinician telecommunication in diabetes care. Future studies should examine the effect of care partners' SM involvement on diabetes-related quality of care and clinical outcomes.