A "Whole Child Approach": Parent Experiences with Acute Care Hospitalizations for Children with Autism Spectrum Disorder and Behavioral Health Needs.

Children with Autism Spectrum Disorder (ASD) experience increased hospitalizations as compared to the general population, particularly in the context of mental health crises. Given the unique needs of children with ASD and behavioral health needs that can either lead to or emerge during hospitalization, an understanding of hospital experiences is critical. To date, research on caregiver experiences in acute care medical hospital settings is limited. Therefore, the purpose of this qualitative study was to investigate caregiver experiences with inpatient care for children with ASD and behavioral health needs, including factors and practices that impacted or were desirable for care. Two focus groups were conducted with a total of 12 parents of children with ASD admitted to a large pediatric hospital. Data were analyzed using interpretive description. Emerging themes pointed to the child, family, and staff factors and practices that intersect to influence hospitalization experiences. Child factors included the child's communication, sensory, behavioral, medical, and safety needs. Family factors included the family's relationship with the healthcare team, own needs, and advocacy experiences. Staff factors included staff communication practices, comfort, and knowledge when providing care. Overall, this research demonstrates the complexity of factors and practices that impact the behavioral health hospitalization experience for children with ASD and their caregivers. Experiences varied widely and were guided by the unique needs of each child. Findings point to care practices that can be adopted to best meet the needs of all stakeholders during hospitalization and offer implications for future educational initiatives.

Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions.

INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequency and nature of spiritual statements in conferences between families and clinicians caring for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we used an existing dataset of audio-recorded, de-identified, transcribed family conferences of infants with neurologic conditions. Inclusion criteria for infants were 1) age < 1 year, 2) presence of a neurologic condition, and 3) planned conversation about neurologic prognosis or goals of care. We used a content analysis approach to code the data. RESULTS: 68 family conferences were held for 24 infants and 36 parents. Most parents (n=32/36, 89%) self-identified as spiritual. References to spirituality occurred in the 32% of conferences (n=22/68). Spiritual discussion included 3 domains: 1) Spiritual beliefs and practices, 2) Spiritual support, and 3) Parent-child connection as sacred. Clinicians' responses to family member spiritual statements were inconsistent and included providing affirmation, exploring goals of care, and continuing discussion of clinical information. CONCLUSIONS: Spirituality was discussed in approximately one-third of family conferences. Clinician engagement with spirituality discussion was variable. These findings highlight a need for training on when and how to discuss spirituality in conversations with families of seriously ill infants.

Fathers' Experiences Six Months After their Preterm Infant's Discharge from the NICU.

Although fathers experience emotional stress both during the care period and after discharge, there is limited research focusing exclusively on fathers' experiences after their time in a neonatal intensive care unit. Their experiences are important for tailoring support to fathers based on their individual needs. This paper is part of a longitudinal study in which parents were followed by means of questionnaires and individual interviews during a two-year period after discharge from hospital-based neonatal home care. A qualitative content analysis with an inductive approach was used to elucidate the experiences of fathers six months after their preterm infant's discharge. Twelve fathers participated in the study. The following categories emerged and constituted the result: "Vivid memories from the NICU," "Struggling with new challenges in life" and "Transition to home still in their thoughts." The approach and attitude of health-care professionals may contribute to fathers' involvement during the care period, as fathers tend to set their own feelings aside.

Bridging The Gap: Essential Role of Parents and Caregivers In Their Child's Management in the Pediatric Intensive Care Unit.

The importance of parental involvement in the care and management decisions made for children hospitalized in the pediatric intensive care unit (PICU) is examined in this editorial. Initial days and weeks in a PICU can be challenging for the child and family due to the emotional intensity and medical complexity of the therapy a child receives. Regardless of the result, families may feel uncertain and anxious that their child may die or have a terrible outcome. The majority of pediatric patient deaths in hospitals happen in the PICU. Recognizing and supporting the crucial role of parents or caretakers in informed decision-making and management of their child's condition is essential for advancing prevention, detection, and treatment efforts.

The effect of family-centered education on posttraumatic stress symptoms in mothers of premature infants hospitalized in the NICU.

BACKGROUND: Premature infant hospitalization in the neonatal intensive care unit (NICU) is considered a traumatic event for mothers. It is critical to provide instructions and support to couples to help them emotionally adapt and reduce posttraumatic stress. The aim of the present study was to determine the effect of family-centered education on posttraumatic stress in mothers of premature infants hospitalized in the NICU. MATERIALS AND METHODS: The present study was a quasiexperimental study. The parents of 80 premature infants admitted to the NICU ward of a hospital in southeastern of Iran in 2020 were divided into two groups of 40 intervention and control. The intervention group received five sessions of family-centered program on daily basis with an average of 60 minutes per session; sessions were held in the presence of both couples and for each couple separately. The control group received only training and usual care. Six weeks after intervention, information was collected using the posttraumatic stress disorder checklist. Data were analyzed using the paired t-test, independent t-test, Chi-square test, and covariance analysis. RESULTS: The intervention and control groups' mean posttraumatic stress scores before family-centered care were 49.65 ± 8.73 and 55.45 ± 10.39, respectively. Six weeks after the intervention the score decreased significantly to 32.75 ± 6.05 and 44.82 ± 6.53. Also, the mean score changes in the intervention group (-16.90 ± 7.69) were significantly higher than those in the control group (-10.63 ± 6.12). CONCLUSIONS: Family-centered education has a positive effect on reducing the severity of posttraumatic stress in mothers of premature infants admitted to NICU.

The Banality of Data: Patient Records, Nursing, and Ideology.

This article explores nursing, patient records, and ideology within the context of the National Socialist "euthanasia" program (Aktion T4) in Germany and Austria from 1939 to 1941, which targeted individuals with mental and physical disabilities for systematic killing. Using Hannah Arendt's concept of the "banality of evil," it examines how ordinary individuals, including nurses, became agents of atrocity by adhering to bureaucratic orders. Jacques Ellul's Ethics of Technology framework is employed to analyze how National Socialist ideology manipulated technological processes to enhance efficiency in genocidal goals. Propaganda was crucial in garnering public support, blurring the lines between technology, ethics, and ideology. Archival research at documentation centers and national archives reveals methods for deciding who was killed, the role of family in medical records, and nurses' involvement in the T4 operation. Three narratives of T4 victims illustrate the personal impacts of these bureaucratic and ideological practices. The article reflects on contemporary nursing, emphasizing the importance of ethical standards and vigilance against data and misuse of technology in health care. This historical examination serves as a reminder of the potential consequences of depersonalization and blind adherence to institutional priorities, underscoring the need for critical engagement with the ethical dimensions of nursing practice.

Interpretability and clinical utility of the strength and stressors in parenting questionnaire.

This study aimed to enhance the interpretability and clinical utility of the strength and stressors in parenting (SSF) questionnaire, a parent-reported questionnaire designed to assess strength, stress and associated risks of mental ill-health in parents of children with developmental disabilities. Responses to the SSF and a demographic questionnaire were collected from 576 parents of children with (n = 203) and without (n = 373) developmental disabilities. To enhance the interpretability of the SSF, a subset of 129 parents were invited to complete an additional questionnaire consisting of three free-text questions regarding recent help-seeking behavior, experiences of mental ill-health and experiences of parenthood. Parents' responses to the free-text questions were then categorized as indicative of higher or lower degrees of stress and compared to their SSF score distribution to derive empirical cut-offs for strength, stress and risk of mental ill-health as measured by the SSF. The credibility of these cut-offs was evaluated by comparing the cut-offs with SSF scores collected from the other 447 parents. Finally, SSF scores from parents of children without developmental disabilities (n = 373) were used to generate percentile values for the SSF to enable a standardized interpretation of SSF scores. To increase the utility of the SSF, we examined a recurring pattern of missing answers to items 23 and 33-38, noted in previous studies of the SSF and repeated in the present study. These items were excluded from further analysis since our examination revealed that they were not missing at random but rather constituted real differences in parental experiences, such as receiving a healthcare allowance, or caring for more than one child. The proposed empirical cut-offs performed well in discriminating between the two groups and yielded a specificity of 77-89% and a sensitivity of 68-76% for the strength, stress and risk of mental ill-health subscales of the SSF. This study also presents a conversion chart associating each SSF score with a corresponding percentile value. We propose modifications to the SSF, whereby items 23 and 33-38 are excluded, which will enable a more reliable assessment of parental experiences. This will, together with the empirical cut-offs and percentile values, enhance the interpretability and clinical utility of the SSF.

No Place to Go: The Relationship Between Care Partner Inclusion Practices and the Hospital Environment.

OBJECTIVE: The objective of this was to explore how the physical environment in a hospital contributes to care partner inclusion practices. BACKGROUND: Despite their vital efforts in caring for people living with dementia (PLWD), care partners of PLWD often report feeling not included in their loved ones' hospitalizations. This phenomenon goes against research, policy initiatives, and hospital design frameworks that underscore the importance of including care partners in hospital care. To ensure that care partners are systematically included in hospital care, health systems must create an environment that prioritizes care partners' presence. METHODS: This descriptive qualitative design employs a multimethod approach to data collection. Our team conducted direct observations in a large academic hospital and interviewed 23 clinicians/administrators and 15 care partners of PLWD to understand the relationship between hospital environments and care partner inclusion. Observational data were analyzed using a framework analysis, and interview data were analyzed through thematic analysis. RESULTS: Direct observations revealed an underutilization of environmental resources such as family-centered spaces and environmental communication tools. Interview data revealed that adequate space for care partners, the layout of patient rooms, parking accessibility, room personalization, and comfort level of the hospital space all impact care partner inclusion. CONCLUSION: Our findings highlight opportunities for health systems to create hospital environments that support PLWD and their care partners. In pursuit of systematic care partner inclusion, health systems can make adequate space for care partners, allocate dementia-friendly parking spaces, increase utilization of environmental communication tools, and increase comfort level of the environment.

Supporting siblings during the critical illness hospitalization of a child: learning from experience.

Introduction: Childhood critical illness impacts the entire family of the critically ill patient. Disruptions to usual family rhythms and routines, established relationships, physical relocations or shifts in caregivers, and the uncertainty about the patient's well-being can have significant impacts on siblings and other connected children in the family. Promoting and facilitating family interactions and engaging younger family members in the hospital experience have been shown to reduce patient and family anxiety, enhance family adaptation, and improve child and family outcomes. The critical care team can implement evidence-informed approaches to address and mitigate challenges for families and provide developmentally aligned support to impacted siblings. Aim: This conceptual paper describes the potential impacts of a critical illness hospitalization on siblings, approaches to supporting siblings, and practical interventions drawn from a synthesis of the current literature and the author's practice experience caring for critically ill children and their families. Data sources: A traditional review and narrative analysis moderated by the authors and supported by lived experience. Conclusions: There is a range of impacts of a critical illness hospitalization on siblings and young family members of the patient. Providing consistent, transparent, and supportive child, sibling, and whole family-centered care can improve the experience and outcomes for the child and family.

Different care mode alter composition and function of gut microbiota in cerebral palsy children.

Introduction: Specialized care is essential for the recovery of children with cerebral palsy (CP). This study investigates how different care modes impact the gut microbiota. Methods: Fecal samples from 32 children were collected, among whom those cared for by family (n = 21) were selected as the observation group, and those cared for by children's welfare institutions (n = 11) were selected as the control group (registration number of LGFYYXLL-024). The gut microbiota profiles were analyzed. Results: There was no significant difference in the α-diversity of the gut microbiota and the abundance at the phylum level. However, at the genus level, the observation group showed a significant increase in the abundance of butyrate-producing bacteria Bacteroides and Lachnospiracea incertae sedis (P < 0.05), and a significant decrease in the abundance of opportunistic pathogens Prevotella, Clostridium cluster IV, Oscillibacter, and Fusobacterium (P < 0.05). Additionally, lipid metabolism, carbohydrate metabolism, transcription, cellular processes and signaling, and membrane transport were significantly upregulated in the observation group. Lipid metabolism was positively correlated with Bacteroides and Lachnospiracea incertae sedis, indicating a positive impact of the family-centered care mode on bacterial metabolism processes. Discussion: This study highlights that the family-centered care mode had a positive impact on the composition and function of the gut microbiota. The study provides valuable insights into the relationship between care mode and gut microbiota, which can inspire the development of interventions for cerebral palsy.

Parental Autonomy in the Care of Premature Newborns and the Experience of a Neonatal Team: Observational Prospective Study.

Background: The European Foundation for the Care of Newborn Infants (EFCNI) has promoted the importance of parental involvement in the care of children. Objective: The study aimed to examine how the time required by parents to achieve autonomy in the care of their very low-birth weight newborn infants was modified during the implementation of a training program. Methods: This was an observational prospective study in the context of a quality improvement initiative. The Cuídame (meaning "Take Care of Me" in English) program was aimed at achieving parental autonomy. It was implemented over 2 periods: period 1, from September 1, 2020, to June 15, 2021; and period 2, from July 15, 2021, to May 31, 2022. The days required by parents to achieve autonomy in several areas of care were collected from the electronic health system. Results: A total of 54 and 43 families with newborn infants were recruited in periods 1 and 2, respectively. Less time was required to acheive autonomy in period 2 for participation in clinical rounds (median 10.5, IQR 5-20 vs 7, IQR 4-10.5 d; P<.001), feeding (median 53.5, IQR 34-68 vs 44.5, IQR 37-62 d; P=.049), and observation of neurobehavior (median 18, IQR 9-33 vs 11, IQR 7-16 d; P=.049). More time was required to achieve autonomy for kangaroo mother care (median 14, IQR 7-23 vs 21, IQR 10-31 d; P=.02), diaper change (median 9.5, IQR 4-20 vs 14.5, IQR 9-32 d; P=.04), and infection prevention (median 1, IQR 1-2 vs 6, IQR 3-12; P<.001). Conclusions: Parents required less time to achieve autonomy for participation in clinical rounds, feeding, and observation of neurobehavior during the implementation of the training program. Nevertheless, they required more time to achieve autonomy for kangaroo mother care, diaper change, and infection prevention.

Instruments for Assessing Family Functioning in Adults Patients with Cancer: A Systematic Review of Measurement Properties.

OBJECTIVES: To identify instruments for assessing family functioning in adults patients with cancer and summarize their psychometric properties. METHODS: Psychometric systematic literature review was conducted to June 2023 using four databases: PubMed, CINAHL, Psych INFO, and Web of Science. The psychometric properties of the instruments and the methodological quality of the studies were evaluated using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist. The Grading of Recommendations, Assessment, Development and Evaluation (GRADE) was used to rate the best available evidence. RESULTS: Forty-four studies reporting 13 instruments were included. The instruments measured varied attributes of family functioning and the dimensions were heterogeneous. The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) was rated the highest in terms of both methodological rigor and instrument quality. However, the Family Adaptability and Cohesion Evaluation Scale (FACES) and the Ice-Expressive Family Functioning Questionnaire (ICE-EFFQ) offer a more comprehensive measure of family functioning, since they assess multiple dimensions of family functioning and demonstrate high-quality measurement properties. CONCLUSIONS: Instruments to assess family functioning were heterogeneous and exhibited limited reliability and validity. The FACES and the ICE-EFFQ seem to be the most suitable measures for adult cancer patients and their families. Future research should aim to refine the content of existing instruments and rigorously assess their psychometric properties. IMPLICATIONS FOR NURSING PRACTICE: Given the profound impact of cancer on family functioning, the initial step in crafting effective interventions is providing valid and reliable instruments to measure the impact of these interventions. This paper could assist nursing professionals in making informed decisions regarding the most suitable instrument for assessing family functioning in adults patients living with life-threatening illness as is the case with cancer.

Parental Self-Efficacy and Personal Time Help Explain Impact of Parent-Staff Interactions on Parental Distress and Bonding in the NICU.

OBJECTIVES: To identify factors that help explain associations between parent-staff interactions and: (1) parental depression, anxiety, and posttraumatic stress; and (2) parent-child bonding in the neonatal intensive care unit (NICU). STUDY DESIGN: Our cross-sectional mixed methods survey investigated the ways in which parental-staff interactions relate to parental distress and parent-child bonding. Parents with babies in the NICU (N = 165) completed validated measures and open-ended questions about their experiences with staff. Using a sequential explanatory approach, we examined: (1) whether and how parental self-efficacy and personal time mediated parent-staff interactions on distress and bonding; and (2) parental written accounts of experiences with staff. RESULTS: Multiple mediation analyses revealed that parent-staff interactions exhibited an: (1) indirect effect on parental depression (b = -.05, SE = .02, CI [-.10, -.01]), anxiety (b = -.08, SE = .04, CI [-.16, -.02]), and parent-child bonding (b = -.26, SE = .08, CI [-.43, -.11]) through parental self-efficacy; and (2) indirect effect on parental posttraumatic stress (b = -.08, SE = .04, CI [-.17, -.00], CSIE= -.06) through parental personal time. Thematic analyses revealed that emotional and instructional support from staff helped build parental self-efficacy. Trust with staff helped parents feel comfortable leaving the bedside and engage in basic needs (eg, eat, sleep). CONCLUSIONS: Family-staff dynamics are the foundation for high quality family-centered care. Staff who empower parents to participate in care, engage in parenting tasks, and take care of themselves may reduce their distress and improve relationships among staff, parents, and babies.

A mixed-method study to develop and evaluate a structured therapeutic communication module on psychological distress and perceived needs among caregivers of critically ill patients in Critical Care Units.

AIMS AND OBJECTIVES: To develop and evaluate the effectiveness of a structured therapeutic communication module on psychological distress and perceived needs among caregivers of critically ill patients. BACKGROUND: Caregivers of critically ill patients experience intense psychological distress, and their needs often go unexpressed or unidentified. Structured therapeutic communication enables nurses to explore and fulfill these needs. METHOD: A mixed-method study was conducted among 30 caregivers of critically ill patients. During phase one, a qualitative interview was conducted, and a structured therapeutic communication module was developed based on Hildegard Peplau's Interpersonal Relations Theory. In the second phase, one group pre-test and post-test design was adopted. The Hospital Anxiety and Depression Scale (HADS) and a Semi-structured interview schedule were used to assess psychological distress and perceived needs, respectively. RESULTS: Half of (50 %) the caregivers reported a high level of anxiety before intervention, with a mean of 11.30 (SD: 4.0), and 66.7 % of them had a high level of depression, with a mean of 12.03 (SD: 0.08). There was a statistically significant difference in anxiety (CI: 0.451-2.016) and depression (CI: 0.261-1.538) before and after the intervention. The qualitative analysis revealed unmet needs perceived by caregivers. CONCLUSION: Using a structured therapeutic communication module helps nurses to alleviate the psychological distress experienced by caregivers of CCU patients. RELEVANCE TO CLINICAL PRACTICE: Nurses need to be sensitive to the unexpressed needs of caregivers of critically ill patients. The structured therapeutic communication modules can be integrated into routine nursing care practice to ensure family-centered care.

Opinions of Patients, Families and Healthcare Professionals on Family Involvement in the Care of Patients Hospitalized in a Moroccan University Hospital: A Cross-Sectional Observational Survey.

Opinion surveys on family participation in care in non-Western countries are rare. This study aims to assess the opinions of patients, families, and healthcare professionals regarding family involvement in care to identify their preferences and the associated factors. A cross-sectional survey was conducted over eight months involving 717 participants, using structured questionnaires at the Acute Assessment Unit of a university hospital in Morocco. Comparative analyses examined the association between participant characteristics and the preferences of care categories. Poisson regression was applied to determine factors associated with participant preferences. Attitudes toward family participation in care were positive, with an average score of 3.62 ± 0.43 on a 4-point Likert scale. Healthcare professionals were more favorable towards family participation, with an average of 10.6 ± 2.44 types of care, compared to 7.17 ± 1.96 for families and 5.71 ± 2.16 for patients. Participants' opinions converged on a set of simple and less technical care tasks. Factors significantly associated with patient preferences in the final adjustment model (p < 0.05) included frailty, loss of autonomy, length of stay, and regular and continuous (day and night) family presence. This study highlights the strong support of health professionals, patients, and families for family participation in care. Understanding these preferences and related factors is essential to maximize family participation and develop a model of Patient And Family Centered Care adapted to the Moroccan context.

The effects of telepresence with real-time video and audio communication on parent-infant interaction and staff experience in neonatal intensive care unit.

Objective: We implemented an online visitation system named "telepresence" in the neonatal intensive care unit (NICU) for family members at home to communicate with their babies in real-time using video and audio. This study evaluated the impact of this system on families and medical staff. Methods: Nineteen families of babies admitted to the NICU between 2022 and 2023 and 65 medical staff participated. Each family experienced two weeks of virtual visits. Changes in parental depression and attachment were assessed. Result: Before and after telepresence, the median Edinburgh Postnatal Depression Scale score reduced from 6 to 4 (p = 0.026), and the Mother-to-Infant Bonding Scale score showed a decreasing trend, with both medians at 2 (p = 0.057). Eighty-nine percent of the parents and 97% of staff reported that telepresence did not increase parental stress, and 88% of parents felt positive changes in their baby's siblings. All parents wanted to visit their babies in person after seeing them on camera. Conclusion: Telepresence improved parental mental health, reduced family distress, and supported connection with their infants, making them eager to visit in person. Innovations: This technology potentially make parents want to visit more by helping them feel more connected to their infants.

Family involvement in mental healthcare practice: Perspectives of mental health nurses, patients, and caregivers.

INTRODUCTION: Family engagement in care has been advocated to promote recovery for patients with mental health conditions. Attitudes of mental health nurses toward the importance of families influence the way they partner with families in mental healthcare. However, little is known about how mental health nurses engage with families and quality of family-centered care (FCC) perceived by patients and caregivers. The study aimed to examine the mediating effect of family nursing practice on the association between mental health nurses' attitudes toward integrating families into care and quality of FCC perceived by patients with schizophrenia and caregivers. DESIGN: A cross-sectional study was conducted. METHODS: A convenience sample of 143 dyads of patients with schizophrenia and their caregivers and 109 mental health nurses were recruited from inpatient wards at two psychiatric hospitals in Taiwan. Demographic and clinical questionnaires, Families' Importance in Nursing Care-Nurses' Attitudes scale, Family Nursing Practice Scale, and Measure of Process of Care for Adults were used to collect data. Data were analyzed using descriptive statistics, independent-sample t-tests, one-way analysis of variance, Pearson correlation coefficients, paired-sample t-tests, and intraclass correlation coefficient (ICC). Mediation analyses were performed using Hayes' PROCESS macro in SPSS (Model 4) with bootstrapping. RESULTS: Mental health nurses exhibited supportive attitudes toward integrating families into care (Mean = 98.96) and greater perceptions of family nursing practice (Mean = 2.44). The concordances between patients and caregivers on perceived quality of family-centered care were significant (ICC = 0.63-0.77). Attitudes of mental health nurses toward integrating families into care had both the total and direct effects on all domains of quality of FCC perceived by patients and caregivers, respectively. The indirect effects of mental health nurses' attitudes toward integrating families into care on aspects of quality of FCC through family nursing practice were significant for patients (95% bias-corrected bootstrap CI of 0.015-0.053) and caregivers (95% bias-corrected bootstrap CI of 0.004-0.041). The magnitude of the indirect effects was medium to large for patients (ES = 0.209-0.257) and caregivers (ES = 0.148-0.221). CONCLUSION: Family nursing practice partially mediated the association between mental health nurses' attitudes toward integrating families into care and aspects of quality of FCC from perspectives of patients and caregivers. CLINICAL RELEVANCE: Interventions tailoring mental health nurses' practice skills and reciprocity with families have the potential to enhance supportive attitudes of mental health nurses toward working with families and further improve perceived quality of FCC in patient-caregiver dyads in mental healthcare practice.

Caregiver burden and eating-related guilt during dysphagia rehabilitation: A descriptive cross-sectional time series study.

BACKGROUND: Caregivers of patients with chronic dysphasia experience stress and guilt regarding their eating behaviors. Dysphagia rehabilitation, including minimal oral intake with tube feeding, may be vital for caregivers. This study investigated the effects of dysphagia rehabilitation on caregiver well-being and attitudes toward eating assistance. METHODS: This cross-sectional questionnaire study was conducted at two dental university hospitals on caregivers of homebound patients with dysphagia undergoing rehabilitation. Caregivers' experiences, with an emphasis on guilt and psychological status, were assessed using the Apathy Scale and Patient Health Questionnaire-5 Depression Scale. Patients were evaluated at the time of the survey and rehabilitation commencement using the Barthel Index and Functional Oral Intake Scale (FOIS). Changes in FOIS scores and caregiver guilt were assessed using the Wilcoxon signed rank test and McNemar test, respectively. The impact of oral intake changes on caregiving motivation was assessed using the Fisher exact test. RESULTS: Between August 2019 and January 2021, 55 of 100 targeted caregivers responded (median age=64.5 years). A significant difference in FOIS scores was found (median rehabilitation duration=9.7 months). Despite 25 pneumonia cases, 65% of the caregivers continued to encourage oral intake. Guilt decreased from 48% during peak dysphagia to 22% at survey time (odds ratio=0.2, 95% CI=0.04-0.70; P < 0.01). No association was found between caregiving motivation and improved oral intake. CONCLUSION: Severe dysphagia impacted caregiver well-being, indicating preferences for patients' oral intake. To support caregivers, healthcare professionals should explore and integrate new multidisciplinary approaches into dysphagia rehabilitation strategies.

Family-centred care as a mediator in the relationship between parental nurse support and parental stress in neonatal intensive care units.

BACKGROUND: Within the NICU, there is a delicate equilibrium between providing assistance to parents by nurses and prioritising family-centred care (FCC). The FCC assumes the role of a mediator, effectively conveying compassion. The intricate dynamics between FCC, parental nurse support, and parental stress in neonatal intensive care units (NICUs) necessitate comprehensive investigation. OBJECTIVE: This study examines the mediating effect of FCC on the relationship between parental nurse support and parental stress in NICUs. METHODS: This cross-sectional observational study used convenience sampling to select 223 parents (202 mothers) from Mansoura City hospitals in Egypt. Data were collected using the Nurse Parent Support Tool (NPST), Family-Centered Care Self-Assessment Tool (FCCS-NICU), and the Parental Stressor Scale: NICU (PSS: NICU). Mediation analysis was used to examine the relationships between variables. RESULTS: Nurse support was positively associated with FCC (ß = 0.81, p < 0.001) and negatively related to parental stress (ß=-1.156, p < 0.001). FCC was found to reduce parental stress (ß=-0.18, p < 0.001). Mediation analysis confirmed that FCC partially mediated the relationship between nurse support and parental stress (indirect effect ß = 0.145, 95% CI: 0.055-1.007). CONCLUSIONS: This study highlights a significant association in the mediating role of FCC between nurse support and parental stress. Strengthening FCC practices can be an effective strategy for nurses to support parents and alleviate their stress in NICU settings. IMPLICATIONS TO PRACTICE: NICUs should implement FCC-oriented training for nurses, foster a culture that supports FCC principles, and develop policies to establish FCC as a cornerstone of neonatal care.

A Purple Butterfly That Conveys Everything Simply and Sensitively in the NICU.

This is an interview with one of the founders of The Butterfly Project where a simple purple butterfly on an infant's incubator or cot can alert others in the NICU that this infant had a sibling who died, thereby guiding a respectful, more sensitive conversation with parents. The program has taken hold throughout the world.