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1.
Acta Paediatr ; 113(8): 1845-1851, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38411347

RESUMEN

AIM: Family Integrated Care (FICare) was developed in high-income countries and has not been tested in resource-poor settings. We aimed to identify the facilitators and constraints that informed the adaptation of FICare to a neonatal hospital unit in Uganda. METHODS: Maternal focus groups and healthcare provider interviews were conducted at Uganda's Jinja Regional Referral Hospital in 2020. Transcripts were analysed using inductive content analysis. An adaptation team developed Uganda FICare based on the identified facilitators and constraints. RESULTS: Participants included 10 mothers (median age 28 years) and eight healthcare providers (seven female, median age 41 years). Reducing healthcare provider workload, improving neonatal outcomes and empowering mothers were identified as facilitators. Maternal stress, maternal difficulties in learning new skills and mistrust of mothers by healthcare providers were cited as constraints. Uganda FICare focused on task-shifting important but neglected patient care tasks from healthcare providers to mothers. Healthcare providers learned how to respond to maternal concerns. Intervention material was adapted to prioritise images over text. Mothers familiar with FICare provided peer-to-peer support to other mothers. CONCLUSION: Uganda FICare shares the core values of FICare but was adapted to be feasible in low-resource settings.


Asunto(s)
Prestación Integrada de Atención de Salud , Humanos , Uganda , Femenino , Adulto , Masculino , Recién Nacido , Grupos Focales , Personal de Salud/psicología , Países en Desarrollo
2.
Adv Neonatal Care ; 24(2): 172-180, 2024 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-38547483

RESUMEN

BACKGROUND: Family Integrated Care (FICare) integrates parents as partners in neonatal intensive care unit care. Our team adapted and implemented this approach in a Ugandan unit for hospitalized neonates. PURPOSE: This qualitative descriptive study examined the perceptions of mothers and healthcare professionals (HCPs) of the benefits and challenges of this new approach to care. METHODS: Fifty-one mothers of hospitalized neonates born weighing greater than 2000 g participated in the program. They were taught to assess neonate danger signs, feeding, and weight. After discharge, a subsample (n = 15) participated in focus groups to explore benefits and challenges of their participation in care. Interviews with 8 HCPs were also conducted for the same purpose. Transcripts from focus groups and interviews were analyzed using inductive content analysis to describe the benefits and challenges from the perspectives of mothers and HCPs. RESULTS: For mothers a benefit was decreased stress. Both mothers and HCPs reported that the knowledge and skills mothers acquired were a benefit as was their ability to apply these to the care of their neonate. Improved relations between mothers and HCPs were described, characterized by greater exchange of information and HCPs' attentiveness to mothers' assessments. Mothers felt ready for discharge and used their knowledge at home. HCPs noted a decrease in their workload. Challenges included the need for mothers to overcome fears about performing the tasks, their own well-being and literacy skills, and access to equipment. IMPLICATIONS FOR PRACTICE: Mothers' participation in their neonates' care can have benefits for them and their neonate.


Asunto(s)
Prestación Integrada de Atención de Salud , Madres , Recién Nacido , Femenino , Humanos , Uganda , Madres/educación , Grupos Focales , Investigación Cualitativa , Personal de Salud
3.
Adv Neonatal Care ; 23(5): 442-449, 2023 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-36719191

RESUMEN

BACKGROUND: While hospitalized in the neonatal intensive care unit (NICU), infants and their families undergo multiple transitions, and these have been found to be a source of stress for families. Although mixed-room NICU designs allow for infants to benefit from different room types as their needs evolve during their stay, these can necessitate a transfer from one room type to another, which represents a transition for families. As some NICUs change to mixed-room designs, there is a need to better understand the factors impacting these particular transitions from the perception of parents. PURPOSE: Examine parent perceptions of factors affecting the transition from a 6-bed pod to single family room in a mixed-room design NICU. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with 17 parents whose infant had transitioned from a 6-bed pod to single family room. Interviews were transcribed verbatim and then analyzed using content analysis. RESULTS: Four categories of factors were identified: (1) framing, timing, and comprehensiveness of information provided by staff regarding the transition; (2) parents' perception of advantages and disadvantages of the new space; (3) parent's own well-being and quality of support from staff; and (4) parent's previous NICU and parenting experience. IMPLICATIONS FOR PRACTICE: Staff should frame the information they provide about this transition in a positive way to help parents adjust. A family-centered approach should also be used to provide tailored information and support to individual families. IMPLICATIONS FOR RESEARCH: Future studies are needed into intraunit transfers including sources of support for parents, as well as staff perceptions of these transitions.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Cuidado Intensivo Neonatal , Recién Nacido , Lactante , Humanos , Padres , Responsabilidad Parental , Percepción
4.
J Perinat Neonatal Nurs ; 37(4): E9-E16, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37773326

RESUMEN

BACKGROUND: As some neonatal intensive care units (NICUs) shift toward mixed-room designs, with different room types available throughout family's stays, there is a need to better understand parent perceptions of this transition. METHODS: This study used a qualitative descriptive design to describe parent perceptions of transitioning from a 6-bed pod to a single family room in a mixed-room design NICU. Purposive sampling was used to recruit 10 mothers and 7 fathers who were regularly present on the unit before and after the transition. Semistructured telephone interviews were conducted a minimum of 2 days after the transition occurred. Interviews were transcribed and then analyzed using reflexive thematic analysis. FINDINGS: Four themes were identified: going into the unknown; approaching the finish line; becoming comfortable in the new reality and seeing the benefits; and gaining autonomy and confidence in parenting. CONCLUSION: These results further our understanding of the transition process from a 6-bed pod to a single-family room for parents in the NICU. Staff should be sensitized to this experience to provide tailored information and support for parents throughout the transition.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Padres , Recién Nacido , Femenino , Humanos , Madres , Responsabilidad Parental
5.
Acta Paediatr ; 111(12): 2299-2306, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36057447

RESUMEN

AIM: We examined if a range of factors were associated with how ready mothers were for their infants to be discharged from a neonatal intensive care unit (NICU). METHODS: This was a secondary analysis of a study on the well-being of mothers whose infants were hospitalised in the level 3 NICU at the Jewish General Hospital in Canada. We studied 132 mother-infant dyads: 70 from an open ward NICU and 62 from the purpose-built NICU with pods or single-family rooms that replaced it in 2016. The mothers completed a questionnaire on NICU stress and their perceptions of family-centred care on enrolment and another on breastfeeding self-efficacy and readiness to go home a week before discharge. The infants' characteristics were retrieved from the medical files. RESULTS: The infants were born at a mean age of 29.8 ± 3.1 weeks. Greater family-centred care during early hospitalisation (p = 0.01) and greater breastfeeding self-efficacy in the period before discharge (p = 0.04) were significantly associated with higher readiness for discharge. The unit design was not significantly associated with readiness for discharge. CONCLUSION: The quality of early family-centred care and breastfeeding self-efficacy were significantly associated with how ready mothers were for their preterm infant to be discharged from the NICU.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Madres , Lactante , Femenino , Recién Nacido , Humanos , Lactancia Materna , Alta del Paciente , Recien Nacido Prematuro , Autoeficacia
6.
Acta Paediatr ; 111(9): 1771-1778, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35708125

RESUMEN

AIM: To describe the impact of the COVID-19 restrictions on the caregiving activities and psychological well-being of fathers with infants admitted to neonatal units. METHODS: Cross-sectional study using adapted COPE-IS and COPE-IU tools. Participants' recruitment occurred online via social media and parents' associations. Online survey in English, French and Italian were distributed and promoted via websites and social media platforms of parent's associations. The study was undertaken across 12 countries in Asia, Australia, Africa and Europe. RESULTS: A total of 108 fathers of NICU infants completed the survey. COVID-19 related restrictions were categorised into 3 types: no restrictions, partial and severe restrictions. Fathers who experienced partial restrictions reported more involvement in caregiving activities but high levels of emotional difficulties and sleeping problems compared to those who experienced full or no restrictions. CONCLUSION: Given the impact on the psychological well-being of fathers, restrictions should be avoided as much as possible in the neonatal unit and fathers given free access to their infants if they follow appropriate infection control precautions.


Asunto(s)
COVID-19 , Trastornos del Sueño-Vigilia , COVID-19/epidemiología , Estudios Transversales , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Padres/psicología
7.
Behav Sleep Med ; 20(5): 610-621, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34472406

RESUMEN

STUDY OBJECTIVES: The purpose of this study is to identify factors associated with Neonatal Intensive Care Unit (NICU) mothers' quality of sleep as measured with the General Sleep Disturbance Scale (GSDS). METHODS: Recruitment took place in a level 3 NICU. At enrollment, mothers completed a socio-demographic questionnaire, described their presence in the unit and their breast milk expression behavior. They also completed online or paper questionnaires about NICU-related stress, symptoms of postpartum depression, family-centered care, perception of noise and light in the unit, and sleep disturbances. Data regarding the infant's clinical condition were collected from their medical file. Pearson correlations were performed to identify associations between mothers' quality of sleep and other study variables. Subsequently, to compare mothers with a clinically significant GSDS score to mothers with a non-significant score, a binary logistic regression model was conducted. RESULTS: 132 mothers participated. Sleep disturbances of mothers with an infant hospitalized in the NICU was positively correlated with stress (r = 0.40; p = .00), depressive symptoms (r = 0.51; p = .00), and breast milk expression (r = 0.23; p = .01). In addition, for mothers with significant levels of depressive symptoms (OR = 1.19; p = .00), with greater presence in the unit (OR = 1.36; p = .04), or with other children at home (OR = 3.12; p = .04), the likelihood of clinically significant sleep disturbances was increased. CONCLUSIONS: These results improve our understanding of the factors influencing the quality of sleep of mothers whose premature infant is hospitalized for 2 weeks or more in the NICU. In addition, these results allow the identification of mothers having a higher possibility for sleep disturbance, which enables the implementation of targeted interventions to promote adequate sleep.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Trastornos del Sueño-Vigilia , Niño , Femenino , Hospitalización , Humanos , Lactante , Recién Nacido , Madres , Sueño , Calidad del Sueño
8.
Adv Neonatal Care ; 22(1): E13-E21, 2022 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-34138795

RESUMEN

BACKGROUND: The unique perspective of fathers with an infant in the neonatal unit on the development of emotional closeness toward their infant is not well understood. The purpose of this study is to explore experiences and instances of emotional closeness from the perspective of fathers as well as factors influencing emotional closeness during an infant's hospitalization in the neonatal unit. METHODS: This qualitative descriptive study employed one-on-one interviews with fathers recruited in a level 3 neonatal unit. The interview data were analyzed with thematic analysis, and emerging themes and subthemes were organized according to dimensional analysis. RESULTS: Eight fathers agreed to take part in this study. According to the participants, emotional closeness was a complex process composed of multiple dimensions. More specifically, emotional closeness was a difficult-to-describe, mixed, and growing feeling influenced by multiple factors such as the environment, co-parenting, and the father-infant relationship. It occurred in the contexts of presence and separation in the neonatal unit and was part of the development of the father-infant relationship. IMPLICATIONS FOR PRACTICE: The results presented in this article are important for neonatal intensive care unit nurses who support fathers in the development of their fathering role. By knowing more about the process and dimensions of emotional closeness, nurses can direct their interventions with fathers to enhance emotional closeness and better understand their experience. IMPLICATIONS FOR RESEARCH: No previous study has addressed emotional closeness as a complex process with multiple components like the current study. These findings contribute to our understanding of the process of emotional closeness for fathers.


Asunto(s)
Recien Nacido Prematuro , Unidades de Cuidado Intensivo Neonatal , Padre , Humanos , Lactante , Recién Nacido , Masculino , Responsabilidad Parental , Investigación Cualitativa
9.
Pain Manag Nurs ; 23(2): 204-211, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34045150

RESUMEN

PURPOSE: The purpose of this study was to translate, adapt and conduct initial psychometric validation of the French version of the Nurses' Attitudes and Perceptions of Pain Assessment in neonatal intensive care Questionnaire (NAPPAQ) developed by Polkki in 2010. BACKGROUND: Assessing nurses' perceptions, attitudes and knowledge about pain management in preterm infants is important to improve neonatal practices. METHODS: A sample of French-speaking nurses (n = 147) from Quebec and France working in neonatal intensive care was selected to validate the 46-item questionnaire. A French translation of the NAPPAQ, which includes Part I and II, was undertaken prior to its administration. The FIPM questionnaire was added as a Part III. Internal consistency and instrument structure were examined using Cronbach's alphas, inter-item and inter-scale correlations and exploratory factor analysis. RESULTS: The NAPPAQ-FIPM is divided into three parts. Part I of the French version had a Cronbach's alpha of 0.64 and was composed of five factors. Part II had good total internal consistency (0.79) and adequate structure, established by inter-item correlations. Part III had good total internal consistency (0.76), and factor analysis findings suggested the presence of five factors. CONCLUSIONS: The NAPPAQ-FIPM can be used for research purposes. Parts II and III obtained adequate psychometrics results. However, further refinement of Part I could improve its content and internal structure.


Asunto(s)
Cuidado Intensivo Neonatal , Enfermeras y Enfermeros , Actitud , Humanos , Recién Nacido , Recien Nacido Prematuro , Dimensión del Dolor , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
10.
J Adv Nurs ; 78(6): 1676-1687, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-34897769

RESUMEN

AIMS: The aim of this study was to examine the potential association of family-centred care as perceived by parents during a NICU stay with parents' depressive symptoms at discharge and at 4 months corrected for infant age. DESIGN: A longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries. METHODS: Parents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants' hospitalizations. They responded to Digi-FCC daily text messages inquiring about their perception of family-centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family-centred care at discharge. Parents' depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age. RESULTS: The mothers' and the fathers' perceptions of family-centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents' participation in infant care, care-related decisions and emotional support provided to parents by staff explained the variation in the parents' perceptions of family-centred care. The factors facilitating the implementation of family-centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents. CONCLUSIONS: Our study shows that family-centred NICU care associates with parents' depressive symptoms after a NICU stay. IMPACT: Depression is common in parents of preterm infants. The provision of family-centred care may protect the mental well-being of parents of preterm infants.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Alta del Paciente , Estudios de Cohortes , Depresión , Femenino , Humanos , Lactante , Recién Nacido , Recien Nacido Prematuro , Padres/psicología
11.
J Perinat Neonatal Nurs ; 36(3): 312-326, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35894730

RESUMEN

In the neonatal intensive care unit, preterm infants undergo many painful procedures. Although these can impair their neurodevelopment if not properly managed, only half of the painful procedures are optimally handled. This cross-sectional study aimed to evaluate nurses' perceptions of preterm infants' pain, to evaluate nurses' pain assessment and management practices, as well as to identify the individual and contextual factors that influence nurses' assessments and interventions for pain management. Secondary analyses, including a mixed-model analysis, were performed with data from a larger study (n = 202 nurses). Nurses were found to have attitudes and perceptions in favor of preterm infants' pain management, although they reported using few standardized instruments to assess pain. Nurses stated that they widely used sucrose, non-nutritive sucking, and positioning as pain management interventions, while skin-to-skin contact was rarely practiced. Nurses' attitudes and perceptions influenced their pain assessment practices, which predicted their implementation of interventions. Several contextual (country, level of care, and work shift) and individual factors (age, level of education, had a preterm infant, perceptions of family-centered care, and skin-to-skin contact) also predicted nurses' pain assessment and management practices.


Asunto(s)
Recien Nacido Prematuro , Enfermeras y Enfermeros , Estudios Transversales , Humanos , Lactante , Recién Nacido , Dolor/diagnóstico , Dolor/etiología , Dimensión del Dolor , Percepción
12.
BMC Psychiatry ; 21(1): 584, 2021 11 20.
Artículo en Inglés | MEDLINE | ID: mdl-34800995

RESUMEN

BACKGROUND: Chronic diseases are the leading cause of death worldwide. It is estimated that 20% of adults with chronic physical diseases experience concomitant depression, increasing their risk of morbidity and mortality. Low intensity psychosocial interventions, such as self-management, are part of recommended treatment; however, no systematic review has evaluated the effects of depression self-management interventions for this population. The primary objective was to examine the effect of self-management interventions on reducing depressive symptomatology in adults with chronic disease(s) and co-occurring depressive symptoms. Secondary objectives were to evaluate the effect of these interventions on improving other psychosocial and physiological outcomes (e.g., anxiety, glycemic control) and to assess potential differential effect based on key participant and intervention characteristics (e.g., chronic disease, provider). METHODS: Studies comparing depression self-management interventions to a control group were identified through a) systematic searches of databases to June 2018 [MEDLINE (1946 -), EMBASE (1996 -), PsycINFO (1967 -), CINAHL (1984 -)] and b) secondary 'snowball' search strategies. The methodological quality of included studies was critically reviewed. Screening of all titles, abstracts, and full texts for eligibility was assessed independently by two authors. Data were extracted by one author and verified by a second. RESULTS: Fifteen studies were retained: 12 for meta-analysis and three for descriptive review. In total, these trials included 2064 participants and most commonly evaluated interventions for people with cancer (n = 7) or diabetes (n = 4). From baseline to < 6-months (T1), the pooled mean effect size was - 0.47 [95% CI -0.73, - 0.21] as compared to control groups for the primary outcome of depression and - 0.53 [95% CI -0.91, - 0.15] at ≥ 6-months (T2). Results were also significant for anxiety (T1) and glycemic control (T2). Self-management skills of decision-making and taking action were significant moderators of depression at T1. CONCLUSION: Self-management interventions show promise in improving depression and anxiety in those with concomitant chronic physical disease. The findings may contribute to the development of future Self-management interventions and delivering evidence-based care to this population. Further high-quality RCTs are needed to identify sources of heterogeneity and investigate key intervention components.


Asunto(s)
Depresión , Automanejo , Adulto , Ansiedad/complicaciones , Ansiedad/terapia , Trastornos de Ansiedad , Enfermedad Crónica , Depresión/complicaciones , Depresión/terapia , Humanos , Calidad de Vida
13.
BMC Pediatr ; 21(1): 210, 2021 04 29.
Artículo en Inglés | MEDLINE | ID: mdl-33926417

RESUMEN

BACKGROUND: As preterm infants' neurodevelopment is shaped by NICU-related factors during their hospitalization, it is essential to evaluate which interventions are more beneficial for their neurodevelopment at this specific time. The objective of this systematic review and meta-analysis was to evaluate the effectiveness of interventions initiated during NICU hospitalization on preterm infants' early neurodevelopment during their hospitalization and up to two weeks corrected age (CA). METHODS: This systematic review referred to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA] guidelines and was registered in PROSPERO (CRD42017047072). We searched CINAHL, MEDLINE, PubMed, EMBASE (OVID), Cochrane Systematic Reviews, CENTRAL, and Web of Science from 2002 to February 2020 and included randomized controlled/clinical trials conducted with preterm infants born between 24 and 366/7 weeks of gestation. All types of interventions instigated during NICU hospitalization were included. Two independent reviewers performed the study selection, data extraction, assessment of risks of bias and quality of evidence. RESULTS: Findings of 12 studies involving 901 preterm infants were synthesized. We combined three studies in a meta-analysis showing that compared to standard care, the NIDCAP intervention is effective in improving preterm infants' neurobehavioral and neurological development at two weeks CA. We also combined two other studies in a meta-analysis indicating that parental participation did not significantly improve preterm infants' neurobehavioral development during NICU hospitalization. For all other interventions (i.e., developmental care, sensory stimulation, music and physical therapy), the synthesis of results shows that compared to standard care or other types of comparators, the effectiveness was either controversial or partially effective. CONCLUSIONS: The overall quality of evidence was rated low to very low. Future studies are needed to identify interventions that are the most effective in promoting preterm infants' early neurodevelopment during NICU hospitalization or close to term age. Interventions should be appropriately designed to allow comparison with previous studies and a combination of different instruments could provide a more global assessment of preterm infants' neurodevelopment and thus allow for comparisons across studies. TRIAL REGISTRATION: Prospero CRD42017047072 .


Asunto(s)
Hospitalización , Recien Nacido Prematuro , Humanos , Lactante , Recién Nacido , Padres
14.
Appetite ; 158: 104999, 2021 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-33058954

RESUMEN

Although several studies have focused on associations between breastfeeding and child obesity, few have focused on associations with dietary intake. We examined associations between breastfeeding duration in infancy and dietary intake in childhood and explored whether associations are still observed in adolescence. The QUALITY (QUebec Adipose and Lifestyle InvesTigation in Youth) cohort includes 630 children aged 8-10 years at baseline (T1) who have at least one parent with obesity. A follow-up assessment was done 7 years later (T2) when participants were aged 15-17 years (n=377). Non-exclusive breastfeeding duration was evaluated at T1 using a parent questionnaire (never, < 3 months, 3-6 months, > 6 months). Dietary intake was assessed at T1 and T2 using three 24-h diet recalls, namely daily servings of vegetables (≥ 2 vs < 2), fruits (≥ 2 vs < 2), vegetables and fruits combined (≥ 5 vs < 5), sugar-sweetened beverages (SSB) (none vs any), and an overall diet quality index (DQI-I) (good vs poor). Multiple logistic regressions, adjusted for age, sex and total kilocalorie intake of the child, for age and body mass index of the mother, and for parental education and income were used. Compared to children breastfed > 6 months (reference group), those never breastfed or breastfed for 3-6 months were 42% (OR = 0.58, 95% CI: 0.34-0.96) and 38% (OR = 0.62, 95% CI: 0.39-1.00) less likely to consume ≥ 2 servings of vegetables per day at 8-10 years, respectively, while no association was found for those breastfed < 3 months. Compared to children breastfed > 6 months, those never breastfed were 1.8 times more likely to drink any SSB (OR = 1.82, 95% CI: 1.03-3.22). No associations were found for other diet indicators, and associations observed in childhood were no longer found by adolescence. In this cohort, breastfeeding was associated with greater vegetable intake and the avoidance of SSB in childhood, but not in adolescence, nor were associations found for fruit intake or overall diet quality.


Asunto(s)
Lactancia Materna , Conducta Alimentaria , Adolescente , Niño , Dieta , Ingestión de Alimentos , Femenino , Frutas , Humanos , Lactante , Quebec , Verduras
15.
J Natl Compr Canc Netw ; 18(6): 650-655, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32502983

RESUMEN

Erdheim-Chester disease (ECD) is an extremely rare and aggressive non-Langerhans histiocytic disorder. ECD typically presents with bone pain in middle-aged adults, although some patients present with multisystem disease involving the skeleton, central nervous system, cardiovascular system, lungs, and other disease sites. The etiology of ECD is currently unknown, but it is thought to be a reactive or neoplastic disorder. Recently, mutation of the BRAF gene has been found in >50% of ECD cases, and this gene has become a therapeutic target for patients with ECD. Vemurafenib, a BRAF inhibitor, has been approved by the FDA for treatment of ECD. This report presents an elderly male patient with an aggressive phenotype of ECD and highlights the utility of multimodality imaging in monitoring the clinical course and disease response to treatment with vemurafenib.


Asunto(s)
Antineoplásicos/uso terapéutico , Enfermedad de Erdheim-Chester/diagnóstico por imagen , Enfermedad de Erdheim-Chester/tratamiento farmacológico , Imagen Multimodal/métodos , Proteínas Proto-Oncogénicas B-raf/metabolismo , Vemurafenib/uso terapéutico , Antineoplásicos/farmacología , Enfermedad de Erdheim-Chester/patología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Vemurafenib/farmacología
16.
Dev Psychopathol ; 32(2): 511-519, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-31030686

RESUMEN

Theory of mind, the ability to represent the mental states of others, is an important social cognitive process, which contributes to the development of social competence. Recent research suggests that interactions between gene and environmental factors, such as oxytocin receptor gene (OXTR) polymorphisms and maternal parenting behavior, may underlie individual differences in children's theory of mind. However, the potential influence of DNA methylation of OXTR remains unclear. The current study investigated the roles of OXTR methylation, maternal behavior, and their statistical interaction on toddlers' early emerging theory of mind abilities. Participants included a community sample of 189 dyads of mothers and their 2- to 3-year-old children, whose salivary DNA was analyzed. Results indicated that more maternal structuring behavior was associated with better performance, on a battery of three theory of mind tasks, while higher OXTR methylation within exon 3 was associated with poorer performance. A significant interaction also emerged, such that OXTR methylation was related to theory of mind among children whose mothers displayed less structuring, when controlling for children's age, sex, ethnicity, number of child-aged siblings, verbal ability, and maternal education. Maternal structuring behavior may buffer the potential negative impact of hypermethylation on OXTR gene expression and function.


Asunto(s)
Receptores de Oxitocina , Teoría de la Mente , Preescolar , Femenino , Humanos , Conducta Materna , Oxitocina , Responsabilidad Parental , Receptores de Oxitocina/genética
17.
BMC Pediatr ; 20(1): 38, 2020 01 29.
Artículo en Inglés | MEDLINE | ID: mdl-31996178

RESUMEN

BACKGROUND: The well-being of mothers of infants requiring Neonatal Intensive Care Unit (NICU) hospitalization may be affected by the architectural design of the unit. A few recent studies suggest there may be some drawbacks of single-family rooms (SFRs) for infants and their mothers, such as isolation of mothers and reduced exposure to auditory stimulation for infants. PURPOSE: To compare NICU-stress, symptoms of depression, perceptions of nurse-parent support and family-centered care, sleep disturbances, breastfeeding self-efficacy and readiness for discharge in mothers of infants cared for in an open ward (OW) to those cared for in a unit that includes both pods and SFRs. METHODS: A pre-post quasi-experimental study was conducted in a Canadian level 3 unit before and after transitioning to a new unit of 6-bed pods and SFRs. OW data were collected in 2014 and pod/SFR data 1 year after the transition in 2017 to 2018. Mothers of infants hospitalized for at least 2 weeks completed questionnaires about stress, depressive symptoms, support, family-centered care, and sleep disturbances. In the week prior to discharge, they responded to breastfeeding self-efficacy and readiness for discharge questionnaires. They described their presence in the NICU at enrollment and again prior to discharge. RESULTS: Pod/SFR mothers reported significantly less NICU-stress compared to OW mothers. OW mothers had greater sights and sounds stress and felt more restricted in their parental role. Pod/SFR mothers reported greater respect from staff. Controlling for maternal education, pod/SFR mothers perceived their infant's readiness for discharge to be greater than OW mothers. There were no significant differences between groups in depressive symptoms, nurse-parent support, sleep disturbances, and breastfeeding self-efficacy. At enrollment and again in the weeks preceding discharge, pod/SFR mothers were present significantly more hours per week than OW mothers, controlling for maternal education. CONCLUSIONS: Further study of small pods is indicated as these units may be less stressful for parents, and enhance family-centered care, as well as maternal presence, compared to OWs.


Asunto(s)
Arquitectura y Construcción de Hospitales , Unidades de Cuidado Intensivo Neonatal , Madres/psicología , Habitaciones de Pacientes , Lactancia Materna , Cuidados Críticos , Enfermería de la Familia , Femenino , Humanos , Recién Nacido , Unidades de Cuidado Intensivo Neonatal/organización & administración , Relaciones Enfermero-Paciente , Relaciones Profesional-Familia
18.
Adv Neonatal Care ; 19(5): 416-424, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-31651473

RESUMEN

BACKGROUND: The architectural design of a neonatal intensive care unit may affect the quality of the work environment for nurses, yet few studies have been conducted using reliable and valid measures. Recent studies have suggested some drawbacks of single-family rooms (SFRs) for both infants and parents. Research is needed to explore nurses' work environment in units combining pods and SFRs. PURPOSE: To compare neonatal intensive care unit nurses' work stress, satisfaction, obstacles, support, team effectiveness, ability to provide family-centered care, and satisfaction with noise, light, and sightlines in an open ward with a new unit of pods and SFRs. METHODS: A pre-post occupancy study was conducted in a level 3 unit before and after transitioning to a new unit of 6-bed pods and SFRs. RESULTS: There were no significant differences in nurse stress, satisfaction, support from colleagues, perceptions of team effectiveness, and ability to provide family-centered care between the open ward and the pod/SFR unit. Organizational obstacles, such as difficulties obtaining information from colleagues, were significantly lower in the pod/SFR. In contrast, environmental and technology obstacles were greater in the new pod/SFR unit. IMPLICATIONS FOR PRACTICE: Some specific aspects of the pod/SFR unit are optimal for neonatal intensive care unit nurses, while other aspects of the open ward are perceived more favorably. IMPLICATIONS FOR RESEARCH: Studies are needed to examine the isolation the nurses may experience in SFR units, as well as strategies to reduce isolation.


Asunto(s)
Actitud , Arquitectura y Construcción de Hospitales , Personal de Enfermería en Hospital/psicología , Estrés Laboral/psicología , Lugar de Trabajo/psicología , Adulto , Femenino , Humanos , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Satisfacción en el Trabajo , Masculino , Persona de Mediana Edad , Enfermería Neonatal , Habitaciones de Pacientes , Apoyo Social , Encuestas y Cuestionarios
19.
Appl Nurs Res ; 47: 29-31, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-31113542

RESUMEN

INTRODUCTION: Light and noise levels may influence preterm infants and their mothers when they are experiencing skin-to-skin contact [SSC] in the Neonatal Intensive Care Unit [NICU]. METHODS: A pilot randomized controlled trial [RCT] of an intervention aiming at reducing light and noise levels during SSC was conducted. Twenty-one neonatal nurses from a level III NICU completed questionnaires assessing their acceptability of NICU light and noise levels reduction during SSC, whether it interfered with their care delivery, in addition to acceptability of specific interventions reducing these levels. FINDINGS: The majority of nurses considered that the reduction of NICU light and noise levels during SSC was acceptable in general, did not interfere with their care delivery, and that the nine selected interventions were also acceptable. CONCLUSION AND RESEARCH IMPLICATIONS: Nurses found it acceptable to reduce NICU light and noise levels during SSC. These findings support the conduct of a full-scale RCT to evaluate the effect of such an intervention on preterm infants and mothers' well-being.


Asunto(s)
Unidades de Cuidado Intensivo Neonatal , Luz , Ruido , Personal de Enfermería en Hospital/psicología , Piel , Adulto , Humanos , Recién Nacido , Proyectos Piloto
20.
Neonatal Netw ; 38(2): 88-97, 2019 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-31470371

RESUMEN

PURPOSE: This study aimed to explore support for mothers and fathers in single-family rooms (SFRs) of a NICU. DESIGN: A qualitative descriptive design was employed. SAMPLE: A convenience sample of 15 parents (nine mothers, six fathers) were recruited from a Level III NICU. METHOD: During their infants' hospitalization, each parent recorded their thoughts and feelings regarding support whenever appropriate over a period of 48 hours using Handy Application to Promote Preterm infant happY-life (HAPPY), an android recording application. RESULTS: Parents felt supported when staff facilitated their learning in a collaborative manner, fostered their optimism, and provided situational assistance. Continuity and consistency of care and presence were important characteristics of supportive nursing care. Though SFRs offered privacy for parents to learn and to be with their infants, the design limited parental access to nursing and medical staff, which sometimes prevented parents from receiving adequate support and partaking in decision making concerning their infants' care.


Asunto(s)
Emociones , Enfermedades del Prematuro , Relaciones Padres-Hijo , Padres/psicología , Habitaciones de Pacientes , Relaciones Profesional-Familia , Adulto , Actitud del Personal de Salud , Comportamiento del Consumidor , Toma de Decisiones Conjunta , Femenino , Humanos , Recién Nacido , Enfermedades del Prematuro/psicología , Enfermedades del Prematuro/terapia , Unidades de Cuidado Intensivo Neonatal/organización & administración , Unidades de Cuidado Intensivo Neonatal/normas , Masculino , Habitaciones de Pacientes/organización & administración , Habitaciones de Pacientes/normas , Investigación Cualitativa , Apoyo Social
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