RESUMEN

Objective: To provide an overview of the development of the Preparing Heart and Mind™ (PHM™) care program designed for parents with a prenatal diagnosis of critical congenital heart disease (CCHD) and describe issues of parental concern, caregiving competencies, and type and timing of PHM™ topics. Methods: Guided participation theory underpinned intervention development and a mixed methods pilot of a novel, nurse-guided mHealth intervention. Parents were enrolled from the third trimester of pregnancy-12 weeks postnatally. Online surveys, session transcripts, and app use were descriptively analyzed. Results: The sample included 19 mothers/birthing persons and 15 caregiving partners randomized to the intervention group. In 49 sessions, mental health/wellbeing (94%) and condition-specific information (86%) were top issues. Many caregiving competencies were developed, with mothers/birthing persons often focused on feeding (86%). Regulating emotions and co-parenting consistently needed support. PHM™ topics of preparing for hospitalization (47%) and handling uncertainty (45%) were most discussed. Two cases further characterize findings. Conclusion: Nurse-parent collaborative understanding of issues emphasized the need for mental health assessments. Prenatal intervention opportunities were underscored through discussions of caregiving issues and PHM™ topics. Innovation: PHM™ represents an innovative approach that holds promise for supporting parents' mental health and caregiving needs outside the healthcare setting.

RESUMEN

We present an evidence-based clinical teaching and learning method based on the middle-range theory of Guided Participation (GP). Typically, teaching and learning in a clinical setting refer to providing information based on the learner's diagnosed condition. With GP, the relationship between guide and patient or client is central to how GP sessions proceed. The guide uses GP processes to identify issues important to the learner and to heighten the learner's competencies for self-care or for caregiving within the family and the community. Through reflection, GP practice heightens competencies in the guide as well. Teaching and learning occur in tandem with learning goals cocreated to help learners resolve, change, and even transform their health-related issues. Learning is embedded in participatory experience that the guide structures, often with the learner. A dynamic process, GP is fashioned and refashioned as the learner develops competencies or acquires new health-related needs. Guided participation assumptions are illustrated with clinical cases drawn from GP practice, and we discuss skills and supports needed for the practice and future directions for extending the method.

RESUMEN

OBJECTIVE: To determine clinical consensus and non-consensus in regard to evidence-based statements about feeding infants with complex CHD, with a focus on human milk. Areas of non-consensus may indicate discrepancies between research findings and practice, with consequent variation in feeding management. MATERIALS AND METHODS: A modified Delphi survey validated key feeding topics (round 1), and determined consensus on evidence-based statements (rounds 2 and 3). Patients (n=25) were an interdisciplinary group of clinical experts from across the United States of America. Descriptive analysis used SPSS Statistics (Version 26.0). Thematic analysis of qualitative data provided context for quantitative data. RESULTS: Round 1 generated 5 key topics (human milk, developing oral feeding skills, clinical feeding practice, growth failure, and parental concern about feeding) and 206 evidence-based statements. The final results included 110 (53.4%) statements of consensus and 96 (46.6%) statements of non-consensus. The 10 statements of greatest consensus strongly supported human milk as the preferred nutrition for infants with complex CHD. Areas of non-consensus included the adequacy of human milk to support growth, need for fortification, safety, and feasibility of direct breastfeeding, issues related to tube feeding, and prevention and treatment of growth failure. CONCLUSIONS: The results demonstrate clinical consensus about the importance of human milk, but reveal a need for best practices in managing a human milk diet for infants with complex CHD. Areas of non-consensus may lead to clinical practice variation. A sensitive approach to these topics is needed to support family caregivers in navigating feeding concerns.

Asunto(s)

RESUMEN

BACKGROUND: Infants with complex congenital heart defects (CCHDs) experience alterations in growth that develop following surgical intervention and persist throughout early infancy, but the roles of nutritional intake and method of feeding require further exploration as their roles are not fully explained. OBJECTIVES: The purpose of this study was to characterize trends in growth and nutritional intake during the first 6 months of life in infants with CCHD. METHODS: We conducted a secondary analysis of growth and nutritional data from a pilot study designed to test the feasibility of nurse-guided participatory intervention with parents of infants with CCHD. Measures included demographic data, anthropometric data at birth, hospital discharge, and 6 months of age, nutritional intake at 2 and 6 months of age from parent-completed 24-hour nutrition diaries, and assessment of oral-motor skills between 1 and 2 months of age. Descriptive statistics and correlation and group differences were examined. RESULTS: Data for 28 infants were analyzed. Infants demonstrated a decrease in weight-for-age z score (WAZ) and length-for-age z score (LAZ) from birth to hospital discharge and an increase in WAZ and LAZ by 6 months of age. Many of the infants developed failure to thrive. Across the study period, one third of the infants were receiving enteral nutrition. Infants who were orally fed had better growth WAZ and LAZ at 6 months of age when compared to infants who were enterally fed. DISCUSSION: Infants with CCHD exhibit growth faltering throughout early infancy. Reliance on enteral nutrition did not improve growth outcomes in these infants. Findings suggest nutritional intake may not be enough to meet the nutrient requirements to stimulate catch-up growth.

Asunto(s)

RESUMEN

PURPOSE: Describe collaborative caregiving of the parents of an infant with congenital heart disease (CHD) with partner, health-care clinicians, and substitute caregivers (SC). DESIGN AND METHODS: In a national online survey, 53 mothers and 12 fathers described collaborative caregiving for infants after CHD intervention with respect to facets of Bowlby's concept of the internal working model of caregiving. Parents identified concern for 24 everyday common problems or goals (i.e., issues; 10 for partner, 9 for clinician, 5 for SC), rated issue importance and difficulty, indicated an intention for seeking and using help (help use), and identified help source. RESULTS: All survey items were a concern to at least 11 parents. Most prominently, all five of the SC items were identified by at least 44% of the parents as a concern. Everyday, common problems and goals were generally reported to be more important than difficult. Two items identified as partner issues, "Talking about life change" and "Handling stress," were a concern for about 50% of parents and identified by at least 74% as very important and 72% as moderately to greatly difficult. Help use was highest for SC items followed by items related to the partner. The partner was most frequently identified as a help source. PRACTICE IMPLICATIONS: Nurses are in a position to assess and support parent collaboration within partner, clinician, and SC relationships for everyday problems and goals. The survey questions, with further development and testing, could be used for clinician assessment and tailoring of intervention to support parents' collaborative caregiving for infants with CHD.

Asunto(s)

RESUMEN

AIM: The aim of this study was to describe co-parenting communication in couples in the context of caregiving for children prenatally diagnosed and born with complex health conditions. BACKGROUND: Foetal diagnosis of complex health conditions such as heart, central nervous system, or abdominal anomalies are confirmed more often than ever before. Following diagnosis, parents face challenges beginning before birth. The quality of co-parenting, when two individuals relate to each other as parents and share parental responsibilities, can have an impact on child health and development. Yet, little is known about co-parenting during the transition to parenthood after foetal diagnosis. DESIGN: This secondary analysis of interview data was informed by Bowlby's theoretical work on a parent's view of self as caregiver and the literature on co-parenting. METHODS: Data were drawn from a larger, mixed methods, longitudinal study and included audio-recorded interviews conducted with 16 parents participating as eight couples after foetal diagnosis during the third trimester of pregnancy in 2011-2012 and again when children were 14-37 months old in 2014. Analysis of interviews transcribed verbatim focused on co-parenting communication. FINDINGS: Co-parenting communication regarding support, agreement and information sharing and a new category of shared meaning were related to the diagnosis before birth. Later, couples evolved in their co-parenting communication while caring for their toddlers and working towards achieving a sense of normalcy. CONCLUSION: Variation in co-parenting communication among couples preparing and caring for children with complex health conditions, including the development of a shared meaning of the child's diagnosis, needs further investigation to inform nursing assessment and guide tailored interventions.

Asunto(s)

RESUMEN

OBJECTIVE: This study was conducted to evaluate the effect of internet-based education on the satisfaction of the mothers of the preterm neonates in the NICUs. METHODS: This quasi-experimental study was conducted on 80 mothers of preterm neonates hospitalized in the NICUs of two hospitals in Iran during 9 months. The mothers were assigned in two groups as cases and controls. The satisfaction level of the mothers was evaluated by using WBPL-Revised1 in both groups on the first and tenth day of the study. Mothers in the case group received the educational program available at www.iranlms.ir/myinfant for 10days. After 10days, the satisfaction level of the mothers in both groups was measured by questionnaire again. RESULT: the satisfaction of the mothers increased in both groups after this intervention. However, comparison of the mean scores revealed that the satisfaction of the mothers in the case group increased significantly following the intervention (P<0.001). CONCLUSION: Considering the benefits of internet-based education, its utilization in mothers education programs in NICUs is recommended. PRACTICE IMPLICATIONS: The results of this study show nurses in the NICU is a way to improve communication and education to parents of infants hospitalized in NICU.

Asunto(s)

RESUMEN

OBJECTIVE: this study evaluates how an internet-based intervention affects mothers' parenting satisfaction, infant centrality and depressive symptoms. DESIGN: a quasi-experimental design and repeated measures were used. SETTINGS: this study was conducted in two Finnish public maternity hospitals (intervention/control). PARTICIPANTS: a convenience sample (N=1300) of primiparous and multiparous Finnish-speaking mothers were invited to participate. Multiple-birth and early discharge mothers receiving home visits were excluded. The analysis included 760 mothers. INTERVENTION: the intervention offered online support for parenting, breast feeding and infant care beginning from the middle of pregnancy. It consisted of an information database, a peer discussion forum and expert advice. MEASUREMENTS: Outcomes were measured by the Evaluation and Infant Centrality subscales of the What Being the Parent of a New Baby is Like-Revised, and the Edinburgh Postnatal Depression Scale after childbirth, and six weeks, six months and 12 months post partum. Age, parity, parenting self-efficacy, and perception of infant and family functioning were used as the covariates. FINDINGS: during the first postpartum year, mothers' parenting satisfaction increased significantly, whereas infant centrality and depressive symptoms decreased within groups. However, these changes were not linear. The mean difference between groups in parenting satisfaction and depressive symptoms was not significant within any of the four assessments. The mean difference in infant centrality between control and intervention mothers was significant only at six weeks post partum. Primiparas scored significantly higher in infant centrality and significantly lower in depressive symptoms than multiparas. KEY CONCLUSION AND IMPLICATIONS FOR PRACTICE: an internet-based intervention did not significantly affect mothers' perceptions of parenting satisfaction and depressive symptoms, but intervention mothers experienced higher infant centrality compared with control mothers at six weeks. Parenting self-efficacy was a significant covariate for all measures. Parity needs to be taken into account when infant centrality and depressive symptoms are used as outcome variables in intervention studies. More research is needed to study the potential of information data bank, professional, and peer online support. This study also highlights the need to pay more attention to the selection of the target population, the selection of outcome measures, and implementation issues in intervention research.

Asunto(s)

RESUMEN

Preterm infants develop the skills necessary to begin oral feeding as their health stabilizes and as they reach a postconceptional age that supports coordination of breathing and swallowing with oral-motor functioning. The time from initiation of oral feeding to full oral feedings (with adequate intake for growth and maintenance of physiologic stability) can vary from days to months for the preterm infant. The approach to feeding the infant during this transition period must be developmentally supportive and tailored to meet the needs of the individual. To accomplish this, caregivers--notably nurses and parents--need to communicate about the specific skills that the infant has gained, about skills that are emerging, and about skills that the infant has not yet developed. The Early Feeding Skills (EFS) Assessment is a checklist for assessing infant readiness for and tolerance of feeding and for profiling the infant's developmental stage regarding specific feeding skills: the abilities to remain engaged in feeding, organize oral-motor functioning, coordinate swallowing with breathing, and maintain physiologic stability. This article introduces the EFS.

Asunto(s)

RESUMEN

Guided by a theoretical process model, we examined direct and indirect effects of infants' biologic condition and experience, the caregiving environment, and caloric intake variables on two outcomes, weight-for-age and motor development, for 52 full-term and 47 premature infants at 12 months post-term age. For full-term infants, birth weight and infant expression of positive affect and behavior during feeding had predicted positive direct effects on weight-for-age. Infant regulation of negative affect and behavior had an unexpected negative effect on this outcome. For premature infants, severity of acute illness, mother's regulation of negative affect and feeding behavior, and caloric intake affected weight-for-age in unpredicted directions. Caregiving variables had indirect effects, through caloric intake, on both outcomes only for premature infants. The findings suggest the theoretical process model differs for premature infants and full-term infants, both in the contributing variables and in the processes of effects.

Asunto(s)

RESUMEN

OBJECTIVE: To characterize the growth of extremely low-birth-weight (ELBW) infants during hospitalization in terms of weight gain, growth velocity, and relative change in weight. DESIGN: Retrospective, descriptive design. SETTING: Two neonatal intensive-care units located in the midwestern United States. PATIENTS: Thirty-five ELBW infants with a birth weight less than 1,000 g and appropriate for gestational age. MAIN OUTCOME MEASURES: Clinical data related to the infant's growth and nutrition were obtained from a chart review. Birth weight and discharge weight were compared following conversion of the weights to z scores. The discharge weight was compared to the median weight of a fetus of comparable gestational age based on an intrauterine growth reference. Growth velocity was determined (grams/day). RESULTS: Weight-for-age z scores decreased significantly between birth and discharge. By discharge, 89% of the infants had discharge weights less than the 10th percentile. The mean discharge weight was significantly less than the median weight of a fetus of comparable gestational age. Days to regain birth weight significantly affected growth outcomes. CONCLUSION: ELBW infants develop a growth deficit during the first few weeks of life that not only persists but also worsens during hospitalization. Potential causes of this growth deficit include the medical and nutritional management that are part of the usual care of ELBW infants. Because these infants are discharged with this growth deficit, catch-up growth will have to occur at home.

Asunto(s)