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1.
Nurs Crit Care ; 2024 May 30.
Artigo em Inglês | MEDLINE | ID: mdl-38816199

RESUMO

BACKGROUND: Family-centred care (FCC), while a core value of paediatric hospitals, has not been well-studied in the paediatric cardiac intensive care unit (PCICU). AIMS: To describe parents' perceptions of FCC provided by nurses in the PCICU during their infant's recovery from neonatal cardiac surgery and explore associations of perceptions of FCC on parent post-traumatic stress (PTS) 4 months post-discharge. STUDY DESIGN: Data obtained from a previously conducted randomized clinical trial (RCT) on telehealth home monitoring after neonatal cardiac surgery at three free-standing paediatric hospitals were analysed from a subset of 164 parents who completed the FCC Scale at hospital discharge, which measures a parent's experience of nursing care that embodies core principles of FCC. The RCT intervention was provided after hospital discharge, having no influence on parent's perception of FCC. The intervention also had no effect on PTS. RESULTS: Perceived FCC was lowest for items 'nurses helped me feel welcomed' and 'nurses helped me feel important in my child's care'. Having 12%-19% points lower perception of FCC at hospital discharge was associated with parent experience of six or more PTS symptoms, at least moderate PTS symptom severity, or PTS disorder diagnosis at 4-month follow-up. Every 10% increase in parental perceptions of FCC was associated with less PTS symptoms (ß = -0.29, SE = 0.12; p = .02) and lower PTS symptom cluster scores of arousal (ß = -0.18, SE = 0.08; p = .02). CONCLUSIONS: Parents who perceived lower FCC during their infants' hospitalization were at increased risk for the development of PTS symptoms, more PTS symptom severity and PTS disorder diagnosis 4-months post-discharge. RELEVANCE TO CLINICAL PRACTICE: Nurses have a prominent role to support the implementation of FCC for infants with cardiac defects and their parents. FCC may positively influence overall parent mental health and well-being, reducing the trauma and distress of the PCICU experience.

2.
Cardiol Young ; 33(8): 1316-1321, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35730320

RESUMO

BACKGROUND & AIMS: Parents of infants with complex CHDs often describe their infants as especially fussy, irritable, and difficult to sooth, which together with the illness caretaking demands add to their stress. Little is known about how the behavioural style or temperament in the early months after discharge relates to parental quality of life. This study aimed to explore the associations between early infant temperament characteristics and parental quality of life in parents of infants with complex CHD. METHODS: This descriptive, cross-sectional study, utilised data collected in a previously described multisite randomised clinical trial in the United States. Multivariable linear regression models were used to examine the associations of interest. FINDINGS: Results demonstrated negative significant associations between most infant temperament subscales and parental quality of life. Higher scores on the Activity (ß = -3.03, p = 0.021), Approach (ß = -1.05, p = 0.021), Adaptability (ß = -3.47, p = 0.004), Intensity (ß = -2.78, p = 0.008), Mood (ß = -4.65, p < 0.001), and Distractibility (ß = -3.36, p = 0.007 were all significantly associated with lower parental quality of life scores, adjusting for parental dyadic adjustment, insurance type, number of medications, and number of unscheduled cardiologist visits. CONCLUSIONS: Parental perceptions of infant's difficult behavioural style or temperament characteristics appear to be associated with poorer quality of life in parents of infants with complex CHD post-cardiac surgery. Findings can be used in the screening process of families at potential risk of increased stress and poor illness adaptation and in the design of interventions to target parental mental health in this vulnerable patient population.


Assuntos
Qualidade de Vida , Temperamento , Humanos , Lactente , Estudos Transversais , Pais/psicologia
3.
J Pediatr Nurs ; 69: 93-100, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36696826

RESUMO

PURPOSE: To explore the relationships between growth trajectory, parenting stress and parent post-traumatic stress (PTS), in infants with congenital heart disease, and the moderating role of parents' dyadic adjustment on those associations. DESIGN AND METHODS: A secondary analysis of data from the REACH Telehalth home monitoring multi-site randomized clinical trial. Parents completed the Parenting Stress Index (PSI), Post-traumatic diagnostic scale, and the Dyadic Adjustment Scale. Multivariate logistic regression models were used to examine the associations of interest. RESULTS: During 4-month follow-up after hospital discharge, parents of infants with 'Never recovered' and 'Partially recovered' growth trajectories had 2-5 times higher odds of experiencing higher stress on the Parent Domain (OR = 4.8, CI = 1.3-18.0; OR = 2.5, CI = 1.0-5.9, respectively) than those with stably grown infants. Parents of "Never recovered" infants had 4 times higher odds of PTS symptoms (OR = 3.9; CI = 1.6-9.9). Parental dyadic adjustment moderated the relationships. Parents of 'Partially recovered' infants and having low dyadic adjustment had 3-5 times higher odds of high stress on all PSI domains, while parents with high dyadic adjustment did not have increased stress due to poor infant growth. Parents of "Never recovered" infants had four times higher odds of PTS symptom, even with high dyadic adjustment. CONCLUSIONS: Infant growth trajectory over the first four months is associated with parenting stress and PTS. Quality of partner relationship moderates some of these associations. PRACTICE IMPLICATIONS: Infant growth should serve as a screening aid for identifying parents at psychological risk. Interventions targeting the quality of partner relationship may support parental coping and mitigate stress. CLINICAL TRIAL REGISTRATION: NCT01941667.


Assuntos
Cardiopatias Congênitas , Pais , Lactente , Humanos , Pais/psicologia , Estresse Psicológico/psicologia , Poder Familiar/psicologia , Adaptação Psicológica
4.
Cardiol Young ; 32(3): 383-389, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34082842

RESUMO

OBJECTIVES: Parents of infants with CHDs experience increased parenting stress compared to the general population, potentially interfering with parenting practices and bear adverse family outcomes. The changes in stress over the critical period of infancy have yet to be studied. The current study aimed to compare parenting stress changes over time between parents of infants with CHDs and parents of healthy infants during the first year of infants' life. METHODS: Data from a larger prospective cohort study were longitudinally analysed using mixed-effects multivariable regression modelling. Sample included mothers of 129 infants with complex cardiac defects and healthy infants, recruited from the cardiac ICU of a large cardiac centre and outpatient paediatric practices in Northeastern America. Outcome was measured over four visits via the Parenting Stress Index Long Form. RESULTS: Stress in the cardiac group has significantly decreased over time on the Parent Domain (p = 0.025), and stress in the healthy group has significantly increased over time on the Child Domain (p = 0.033). Parenting stress trajectories demonstrated significant differences between groups on the Parent Domain (p = 0.026) and on the Total Stress (p = 0.039) subscales. CONCLUSIONS: Parenting stress in the paediatric cardiac population changes over time and differs from stress experienced by parents of healthy infants. Findings highlight stressful periods that may be potentially risky for parents of infants with CHDs and introduce additional illness-related and psychosocial/familial aspects to the parenting stress concept.


Assuntos
Poder Familiar , Estresse Psicológico , Criança , Feminino , Humanos , Lactente , Relações Pais-Filho , Pais , Estudos Prospectivos
5.
J Pediatr Nurs ; 66: 23-29, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35598589

RESUMO

PURPOSE: We aimed to describe the weight-for-age Z-score growth trajectory (WAZ-GT) of infants with complex congenital heart disease (cCHD) after neonatal cardiac surgery in the first 4 months of life and assess potential risk factors. METHODS: We utilized data from a previously reported trial of the REACH telehealth home monitoring (NCT01941667) program which evaluated 178 infants with cCHD from 2012 to 2017. Over the first 4 months of life, weekly infant weights were converted to WAZ. WAZ-GT classes were identified using latent class growth modeling. Multinomial logistic regression models were used to examine the associations between potential risk factors and WAZ-GT classes. RESULTS: Four distinct classes of WAZ-GT were identified: maintaining WAZ > 0, 14%; stable around WAZ = 0, 35%; partially recovered, 28%; never recovered, 23%. Compared with reference group "stable around WAZ=0," we identified clinical and sociodemographic determinants of class membership for the three remaining groups. "Maintaining WAZ > 0" had greater odds of having biventricular physiology, borderline appetite, and a parent with at least a college education. "Partially recovered" had greater odds of hospital length of stay>14 days and being a single child in the household. "Never recovered" had greater odds hospital length of stay >14 and > 30 days, tube feeding at discharge, and low appetite. CONCLUSIONS: This study described distinct classes of WAZ-GT for infants with cCHD early in infancy and identified associated determinants. PRACTICE IMPLICATIONS: Findings from this study can be used in the identification of infants at risk of poor WAZ-GT and in the design of interventions to target growth in this vulnerable patient population.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Cardiopatias Congênitas , Criança , Nutrição Enteral , Humanos , Lactente , Recém-Nascido
6.
J Pediatr ; 238: 241-248, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34216630

RESUMO

OBJECTIVE: To examine the associations between post-traumatic stress of parents of infants with complex congenital heart defects and their healthcare use for their infants during the early months of life. STUDY DESIGN: The current study is a secondary data analysis from a randomized controlled trial in which 216 parent-infant dyads were recruited from 3 cardiac intensive care units of large pediatric centers in Northeastern America. The current sample included 153 dyads with post-traumatic stress data at hospital discharge and at 4-months' follow-up. Poisson regressions were used to estimate the effect of post-traumatic stress change scores on number of emergency department (ED) visits, unscheduled cardiologist visits, and unscheduled pediatrician visits outcomes. RESULTS: Infants whose parents gained post-traumatic stress disorder over the study period were at increased risk for ED visits and unscheduled cardiologist visits. Increased symptom severity predicted more unscheduled cardiologist visits and more unscheduled pediatrician visits. Increased symptom clusters (avoidance, arousal, re-experiencing) predicted more ED visits, more unscheduled cardiologist visits, and more unscheduled pediatrician visits. CONCLUSIONS: Parents of infants with cardiac conditions may experience post-traumatic stress following cardiac surgery, which can be linked to greater healthcare use. Findings highlight the importance of screening and treating post-traumatic stress to preserve parental mental health and prevent adverse outcomes.


Assuntos
Cardiopatias Congênitas/cirurgia , Pais/psicologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Adulto , Criança , Feminino , Cardiopatias Congênitas/psicologia , Humanos , Masculino , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Autorrelato , Índice de Gravidade de Doença , Transtornos de Estresse Pós-Traumáticos/psicologia
7.
Adv Neonatal Care ; 21(2): 152-159, 2021 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-33350705

RESUMO

BACKGROUND: Premature infants may experience increased difficulty with nutrition and growth. Successful oral feeding is an important factor associated with discharge readiness. Despite the importance of feeding as a growth-fostering process, little empiric evidence exists to guide recommendations for early interventions. PURPOSE: Evaluate whether specific elements of sucking, during preterm initiation of oral feeding, predict sucking organization at corrected term age. METHODS: Sucking performance of 88 preterm infants born between 24 and 34 weeks of post-menstrual age was measured at baseline and term (33-35 and 40 ± 1.5 weeks). Participants were divided into 4 groups (quartiles) based on initial measures of performance including number of sucks, number of bursts, sucks per burst, and maximum pressure. Stability in sucking organization was assessed by comparing changes in infant's quartile location from baseline to term. RESULTS: A correlation between quartile location was observed for mean maximum pressure (PMAX): infants with PMAX in the lowest quartile (poorest performance) were significantly more likely to remain in the lowest quartile at term (P < .000); infants in the highest quartile (best performance) at baseline were significantly more likely to be in the highest quartile at term (P < .000). IMPLICATION FOR PRACTICE: Infants with the weakest sucking pressures at 34 weeks of post-menstrual age continue to be at risk for less than optimal feeding skills at 40 weeks of post-menstrual age. Early identification of at-risk infants may allow for effective interventions to potentially decrease long-term feeding problems. IMPLICATIONS FOR RESEARCH: Future research should focus on the development of personalized interventions to address attributes of problematic feeding such as sucking efficiency.


Assuntos
Recém-Nascido Prematuro , Comportamento de Sucção , Humanos , Lactente , Recém-Nascido
8.
Cardiol Young ; 31(11): 1842-1849, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33818351

RESUMO

BACKGROUND: Parents of infants born with critical congenital heart disease are at risk for adverse mental health symptoms. The purpose of this study was to identify infant-, parent-, and environmental-based stressors for mothers and fathers after their infants' cardiac surgery, and to explore relationships between stressors and mental health symptoms of anxiety and depression. METHODS: This study enrolled 28 biological mother-father dyads from families admitted to the paediatric cardiac intensive care unit for cardiac surgery at one free-standing children's hospital in the Northeast. Paired t-tests were used to examine group differences between mothers and fathers on perceived stressors and mental health symptoms, while linear mixed effects modelling was used to explore the predictive relationship between perceived stressors, personal factors, and mental health symptoms. RESULTS: Mothers reported higher perceived stressor scores of parental role alteration (t = 4.03, p < 0.01) and infant appearance and behaviour (t = 2.61, p = 0.02), and total perceived stress (t = 2.29 p = 0.03), compared to fathers. Mothers also reported higher anxiety (t = 2.47, p = 0.02) and depressive symptoms (t = 3.25, p < 0.01) than fathers. In multivariable analysis, parental role alteration significantly predicted anxiety (t = 5.20, p < 0.01, d = 0.77) and depressive symptoms (t = 7.09, p < 0.01, d = 1.05) for mothers and fathers. The consensus subscale of the Dyadic Adjustment Scale also significantly predicted depressive symptoms (t = -2.42, p = 0.02, d = 0.04). CONCLUSION: Parents were distressed during their infant's admission for surgical repair for critical congenital heart disease. Parental role alteration was significantly associated with parental anxiety and depressive symptoms, while poor relationship quality was associated with depressive symptoms, highlighting areas for potential nursing-led psychosocial led interventions.


Assuntos
Depressão , Cardiopatias Congênitas , Ansiedade/epidemiologia , Criança , Depressão/epidemiologia , Pai , Feminino , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Unidades de Terapia Intensiva Pediátrica , Masculino , Mães , Pais , Projetos Piloto , Estresse Psicológico/epidemiologia
9.
Cardiol Young ; 31(4): 589-596, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33303052

RESUMO

Congenital heart disease (CHD) is the most common birth defect for infants born in the United States, with approximately 36,000 affected infants born annually. While mortality rates for children with CHD have significantly declined, there is a growing population of individuals with CHD living into adulthood prompting the need to optimise long-term development and quality of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental challenges and feeding difficulties. Feeding challenges carry profound implications for the quality of life for individuals with CHD and their families as they impact short- and long-term neurodevelopment related to growth and nutrition, sensory regulation, and social-emotional bonding with parents and other caregivers. Oral feeding challenges in children with CHD are often the result of medical complications, delayed transition to oral feeding, reduced stamina, oral feeding refusal, developmental delay, and consequences of the overwhelming intensive care unit (ICU) environment. This article aims to characterise the disruptions in feeding development for infants with CHD and describe neurodevelopmental factors that may contribute to short- and long-term oral feeding difficulties.


Assuntos
Cardiopatias Congênitas , Qualidade de Vida , Adulto , Cuidadores , Criança , Emoções , Cardiopatias Congênitas/epidemiologia , Humanos , Lactente , Pais
10.
Pediatr Crit Care Med ; 21(9): e834-e841, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32740179

RESUMO

OBJECTIVES: To determine the effect of skin-to-skin care on stress, pain, behavioral organization, and physiologic stability of infants with critical congenital heart disease before and after neonatal cardiac surgery. DESIGN: A baseline response-paired design was used, with infants acting as their own controls before, during, and after skin-to-skin care at two distinct time points: once in the preoperative period (T1) and once in the postoperative period (T2). SETTING: Cardiac ICU and step-down unit in a large metropolitan freestanding children's hospital. SUBJECTS: Convenience sample of 30 infants admitted preoperatively for critical congenital heart disease. INTERVENTIONS: Eligible infants were placed into skin-to-skin care for 1 hour with their biological mothers once each at T1 and T2. MEASUREMENTS AND MAIN RESULTS: Measurements of stress (salivary cortisol), pain and behavior state (COMFORT scale), and physiologic stability (vital signs) were assessed immediately before skin-to-skin care, 30 minutes into skin-to-skin care, and 30 minutes after skin-to-skin care ended.At both T1 and T2, infant pain scores were significantly decreased (p < 0.0001) and infants moved into a calmer behavior state (p < 0.0001) during skin-to-skin care as compared to baseline. At T1, infants also had significantly reduced heart rate (p = 0.002) and respiratory rate (p < 0.0001) and increased systolic blood pressure (p = 0.033) during skin-to-skin care. At both T1 and T2, infant cortisol remained stable and unchanged from pre-skin-to-skin care to during skin-to-skin care (p = 0.096 and p = 0.356, respectively), and significantly increased from during skin-to-skin care to post-skin-to-skin care (p = 0.001 and p = 0.023, respectively). Exploratory analysis revealed differences in cortisol reactivity for infants with higher baseline cortisol (> 0.3 µg/dL) versus lower (≤ 0.3 µg/dL) prior to skin-to-skin care. Infants with higher baseline cortisol at T2 experienced significantly reduced cortisol during skin-to-skin care (p = 0.025). No significant differences in demographics or baseline variables were found between infants in either group. CONCLUSIONS: Skin-to-skin care is a low-cost, low-risk intervention that promotes comfort and supports physiologic stability in infants before and after neonatal cardiac surgery.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Hidrocortisona , Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Criança , Feminino , Humanos , Lactente , Recém-Nascido , Mães , Dor , Higiene da Pele
11.
Res Nurs Health ; 43(2): 145-154, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31985067

RESUMO

Solid-organ transplantation is the treatment of choice for end-stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self-Management Theory and focuses on family self-management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family-nurse communication and family self-management behaviors for family members of pediatric transplant recipients.


Assuntos
Adaptação Psicológica , Assistência ao Convalescente/psicologia , Família/psicologia , Transplante de Órgãos/enfermagem , Autogestão/psicologia , Telemedicina/organização & administração , Transplantados/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Projetos Piloto , Estados Unidos
12.
J Pediatr Nurs ; 51: 1-7, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31812926

RESUMO

PURPOSE: Developmental delays are among the major morbidities of children with complex congenital heart disease. Parents of infants with complex congenital heart disease experience increased parenting stress levels, which can interfere with parenting processes during infancy. The current study examined associations between infant development and parenting stress in infants with complex congenital heart disease at six and twelve months of age. DESIGN AND METHODS: A secondary analysis of data examined cross-sectional associations between infant's mental and psychomotor development and parenting stress, using general linear regression modeling (N = 75). Data were obtained from a larger prospective cohort study. RESULTS: Mental development was negatively associated with the Parent Domain at six months, and with the Parent Domain and Total Stress at twelve months. Psychomotor development was not significantly associated with parenting stress at six and twelve months. CONCLUSIONS: Parenting stress in parents of infant with complex congenital heart disease may be among the factors shaping the parent-child relationship during the first year of life, which plays an important role in infant development. A potential bidirectional relationship between parenting stress and infant development may fit a transactional model representing the phenomena. PRACTICE IMPLICATIONS: Family interventions aiming to reshape illness perceptions may promote parental adaptive coping and productive parenting practices in populations at risk.


Assuntos
Desenvolvimento Infantil , Cardiopatias Congênitas/psicologia , Relações Pais-Filho , Poder Familiar , Estresse Psicológico/complicações , Adaptação Psicológica , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Pais , Estudos Prospectivos , Inquéritos e Questionários
13.
Adv Neonatal Care ; 19(1): 21-31, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30028735

RESUMO

BACKGROUND: The term "oral feeding success" (OFS) is frequently used in clinical practice and research. However, OFS is inconsistently defined, which impacts the ability to adequately evaluate OFS, identify risk factors, and implement interventions in clinical practice and research. PURPOSE: To develop the defining attributes, antecedents, and consequences for the concept of OFS in preterm infants during their initial hospitalization. METHODS: PubMed, CINAHL, and PsycINFO databases were searched for English articles containing the key words "oral feeding success" and "preterm infants." The Walker and Avant method for concept analysis was employed. RESULTS: Sixteen articles revealed the defining attributes, antecedents, and consequences. Defining attributes included (1) physiologic stability; (2) full oral feeding; and (3) combined criteria of feeding proficiency (≥30% of the prescribed volume during the first 5 minutes), feeding efficiency (≥1.5 mL/min over the entire feeding), and intake quantity (≥80% of the prescribed volume). IMPLICATIONS FOR PRACTICE: The 3 defining attributes may be used in clinical practice to consistently evaluate OFS. The antecedents of OFS provide clinicians with a frame of reference to assess oral feeding readiness, identify risk factors, and implement effective interventions. The consequences of OFS allow clinicians to anticipate challenges when OFS is not achieved and create a care plan to support the infants. IMPLICATIONS FOR RESEARCH: The empirical referents of OFS provide consistent and clear operational definitions of OFS for use in research. The antecedents and consequences may guide researchers to select specific measures or covariates to evaluate valid measures of OFS.


Assuntos
Comportamento Alimentar/fisiologia , Recém-Nascido Prematuro/fisiologia , Comportamento de Sucção/fisiologia , Aleitamento Materno/métodos , Humanos , Fenômenos Fisiológicos da Nutrição do Lactente , Recém-Nascido
14.
J Cardiovasc Nurs ; 34(1): 85-93, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30303895

RESUMO

BACKGROUND: Infants born with critical congenital heart disease (cCHD) who require surgical intervention in the newborn period are often hospitalized in a cardiac intensive care unit (CICU). Cardiac surgery and the CICU environment are traumatic to infants and their families. Infants are exposed to overwhelming stress, which can result in increased pain, physiologic instability, behavioral disorganization, disrupted attachment, and altered brain development. Individualized Family-centered Developmental Care (IFDC) is a model that can address the unique needs and developmental challenges of infants with cCHD. PURPOSE: The purpose of this article is to (1) clearly describe the uniqueness of the infant with cCHD, including the medical, neurological, and parental challenges, and (2) propose methods to apply IFDC to support recovery of infants with cCHD in the CICU. CONCLUSIONS: The experiences in the CICU shape the developing brain and alter recovery and healing, thus adversely impacting development. Individualized Family-centered Developmental Care is a promising model of care that nurses can integrate into the CICU to promote neuroprotection and development. Nurses can effectively integrate IFDC into the CICU by understanding the unique characteristics of infants with cCHD and applying IFDC interventions that include both maturity and recovery perspectives. CLINICAL IMPLICATIONS: The incorporation of IFDC interventions is essential for the infant with cCHD and should be a standard of care. Applying IFDC with a recovery perspective in all aspects of caregiving will provide opportunities for individualization of care and parent engagement, allowing infants in the CICU to recover from surgery while supporting both short- and long-term neurodevelopment.


Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Cardiopatias Congênitas/cirurgia , Unidades de Terapia Intensiva Neonatal/organização & administração , Pais/educação , Pacotes de Assistência ao Paciente/estatística & dados numéricos , Feminino , Cardiopatias Congênitas/psicologia , Humanos , Lactente , Recém-Nascido , Avaliação das Necessidades/estatística & dados numéricos
15.
Cardiol Young ; 28(7): 961-967, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29848400

RESUMO

Approximately 32,000 infants are born with CHDs each year in the United States of America. Of every 1000 live births, 2.3 require surgical or transcatheter intervention in the first year of life. There are few more stressful times for parents than when their neonate receives a diagnosis of complex CHD requiring surgery. The stress of caring for these infants is often unrelenting and may last for weeks, months, and often years, placing parents at risk for developing post-traumatic stress disorder, as well as a drastic decrease in quality of life. Anxiety often peaks in the days and weeks after discharge from the hospital as families no longer have immediate access to nursing and medical staff. The purpose of this paper is to describe the methods of a randomised controlled trial that was designed to determine whether REACH would favourably affect parental and infant outcomes by decreasing parental stress, improve parental quality of life, increase infant stability, and decrease resource utilisation in infants with complex CHD.


Assuntos
Comunicação , Cardiopatias Congênitas/enfermagem , Serviços de Assistência Domiciliar , Pais/psicologia , Telemedicina , Adulto , Feminino , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Recém-Nascido , Masculino , Alta do Paciente , Qualidade de Vida , Estresse Psicológico/terapia , Estados Unidos , Aumento de Peso
16.
Acta Paediatr ; 106(2): 236-241, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27862264

RESUMO

AIM: This trial compares two oral feeding schedules, every three-hour and every six-hour oral feeding attempts, to determine which schedule allows for more rapid attainment of full oral feeding in preterm infants. METHODS: Infants born at ≤33-week gestation were randomly assigned to receive oral feeding every three hours or every six hours if feeding cues were present. The primary outcome was time to full oral feeding; secondary outcomes include respiratory and apnoea rates, growth and length of stay. RESULTS: A total of 55 infants were recruited. There was no difference between the groups in the primary or secondary outcomes. CONCLUSION: For preterm infants fed when oral feeding cues are present, an every six-hour schedule did not alter the time to full oral feeding and had no effect on rates of tachypnoea, apnoea or length of hospital stay compared to every three-hour feeding schedule. An every six-hour oral feeding schedule led to only small reductions in number of oral feeding attempts per day.


Assuntos
Métodos de Alimentação , Recém-Nascido Prematuro , Terapia Intensiva Neonatal/métodos , Feminino , Humanos , Recém-Nascido , Masculino , Fatores de Tempo
17.
J Pediatr Nurs ; 37: 117-126, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28807423

RESUMO

BACKGROUND: Mothers of infants with complex congenital heart disease are exposed to increased stress which has been associated with numerous adverse health outcomes. The coping mechanisms these mothers use critically effect the familial illness adaptation and most likely infant outcomes. Currently no data-based strategies have been developed for mothers to facilitate their coping, and proactively promote their adaptation in the critical care settings. A potential strategy is mindfulness which is currently used in other clinical settings with stress-reduction effects. PURPOSE: (1) To investigate coping mechanisms of mothers whose infant with complex CHD is admitted in the CICU, and (2) to explore the acceptability and feasibility of mindfulness as a potential stress-reduction intervention for these mothers. DESIGN AND METHODS: A descriptive qualitative study obtained perspectives from 14 mothers during three focus groups. A qualitative conventional content analysis was performed using ATLAS.ti. RESULTS: In congruence with the Stress and Coping framework, themes identified mostly emotion-regulatory coping mechanisms including both active and passive strategies such as positive thinking, denial, distraction, relying on support systems, and focusing on baby. Mindfulness was an acceptable and feasible approach for most participants, however, practice unfamiliarity, time and space concerns, and personal preferences were identified as potential barriers for future dissemination. CONCLUSIONS: Mindfulness can potentially promote illness adaptation by utilization of active coping mechanisms. Early interventions can provide immediate, and potentially long-term stress relief. Intervention settings, format, and time-frame should be flexibly tailored to the trajectory of parental distress and familial adjustment.


Assuntos
Adaptação Psicológica , Cardiopatias Congênitas/diagnóstico , Atenção Plena/métodos , Mães/psicologia , Estresse Psicológico , Adulto , Cuidados Críticos/métodos , Feminino , Grupos Focais , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/terapia , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Relações Mãe-Filho , Pesquisa Qualitativa
18.
J Pediatr ; 169: 154-9.e1, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26585995

RESUMO

OBJECTIVE: To assess the association between early anthropometric measurements, device-assisted feeding, and early neurodevelopment in infants with complex congenital heart diseases (CHDs). STUDY DESIGN: Bayley Scales of Infant Development II were used to assess cognitive and motor skills in 72 infants with CHD at 6 and 12 months of age. Linear regression models were used to assess the association between mode of feeding and anthropometric measurements with neurodevelopment at 6 and 12 months of age. RESULTS: Of the 72 infants enrolled in the study, 34 (47%) had single-ventricle physiology. The mean Mental Developmental Index (MDI) and Psychomotor Developmental Index (PDI) scores at 6 months of age were 92 ± 10 and 81 ± 14, respectively. At 12 months of age, the mean MDI and PDI scores were 94 ± 12 and 80 ± 16, respectively. Lower length-for-age z score (P < .01) and head circumference-for-age z score (P < .05) were independently associated with lower MDI at 6 months, and both increased hospital length of stay (P < .01) and lower length-for-age z score (P = .04) were associated independently with lower MDI at 12 months. Device-assisted feeding at 3 months (P = .04) and lower length-for-age z score (P < .05) were independently associated with lower PDI at 6 months. Both lower weight-for-age z score (P = .04) and lower length-for-age z score (P = .04) were associated independently with PDI at 12 months. CONCLUSION: Neonates with complex CHD who required device-assisted feeding and those with lower weight and length and head circumference z scores at 3 months were at risk for neurodevelopmental delay at 6 and 12 months of age.


Assuntos
Desenvolvimento Infantil , Métodos de Alimentação , Crescimento , Cardiopatias Congênitas/fisiopatologia , Métodos de Alimentação/instrumentação , Feminino , Cardiopatias Congênitas/complicações , Humanos , Lactente , Masculino , Transtornos do Neurodesenvolvimento/etiologia , Estudos Prospectivos
19.
Adv Neonatal Care ; 16(3): 211-9, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27140031

RESUMO

BACKGROUND: Developmental care practices across pediatric cardiac intensive care units (CICUs) have not previously been described. PURPOSE: To characterize current developmental care practices in North American CICUs. METHODS: A 47-item online survey of developmental care practices was developed and sent to 35 dedicated pediatric CICUs. Staff members who were knowledgeable about developmental care practices in the CICU completed the survey. FINDINGS/RESULTS: Completed surveys were received from 28 CICUs (80% response rate). Eighty-nine percent reported targeted efforts to promote developmental care, but only 50% and 43% reported having a developmental care committee and holding developmental rounds, respectively. Many CICUs provide darkness for sleep (86%) and indirect lighting for alertness (71%), but fewer provide low levels of sound (43%), television restrictions (43%), or designated quiet times (21%). Attempts to cluster care (82%) and support self-soothing during difficult procedures (86%) were commonly reported, but parental involvement in these activities is not consistently encouraged. All CICUs engage in infant holding, but practices vary on the basis of medical status and only 46% have formal holding policies. IMPLICATIONS FOR PRACTICE: Implementation of developmental care in the CICU requires a well-planned process to ensure successful adoption of practice changes, beginning with a strong commitment from leadership and a focus on staff education, family support, value of parents as the primary caregivers, and policies to increase consistency of practice. IMPLICATIONS FOR RESEARCH: Future studies should examine the short- and long-term effects of developmental care practices on infants born with congenital heart disease and cared for in a pediatric CICU.


Assuntos
Desenvolvimento Infantil , Unidades de Cuidados Coronarianos/organização & administração , Cardiopatias Congênitas/terapia , Canadá , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Relações Profissional-Família , Inquéritos e Questionários , Estados Unidos
20.
Adv Neonatal Care ; 15(2): 142-9, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25822519

RESUMO

BACKGROUND: Premature infants are at risk for difficulties in feeding, social interaction, and growth. Many premature infants exhibit a lower capacity for self-regulation, resulting in less behavioral alertness and hypersensitivity to stimulation. Feeding is critically important because it is a primary factor for infant growth and a major concern for both parents and clinicians. PURPOSE: The aim of this randomized controlled trial was to evaluate sucking organization in premature infants following a preterm infant multisensory intervention, the Auditory, Tactile, Visual, and Vestibular (ATVV) intervention. METHODS: A convenience sample of 183 healthy premature infants born 29-34 weeks postmenstrual age (PMA) enrolled. Sucking organization was measured at baseline, then weekly, during the infant's hospital stay. RESULTS: A quadratic trend was observed for number of sucks, sucks per burst, and maturity index with the intervention group increasing significantly faster by day 7 (model estimates for group × day: ß= 13.69, P < .01; ß = 1.16, P < .01; and ß= 0.12, P < .05, respectively). Sucking pressure increased linearly over time, with significant between-group differences at day 14 (ß= 45.66, P < .01). IMPLICATIONS FOR PRACTICE: The ATVV infants exhibited improved sucking organization during hospitalization, suggesting that the ATVV intervention improves maturation of oral feeding. IMPLICATIONS FOR RESEARCH: Further research that includes 2 or more tests, delivered the same day and/or over consecutive days, will provide researchers and clinicians a more sensitive indicator of maturational changes in feeding behaviors.


Assuntos
Destreza Motora , Estimulação Física/métodos , Comportamento de Sucção , Vigília , Estimulação Acústica/métodos , Comportamento Alimentar , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Masculino , Estimulação Luminosa/métodos
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