An mHealth, patient engagement approach to understand and address parents' mental health and caregiving needs after prenatal diagnosis of critical congenital heart disease.

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.

Caregiving and Support Issues Identified by Parents of an Infant With Congenital Heart Disease for Interactive Problem-Solving.

Background and Purpose: Parents of an infant with complex congenital heart disease report caregiving challenges in the infant's first half year. We studied the issues parent dyads (mothers and fathers) were dealing with and their effect on their coparenting competencies in interactive problem-solving. Methods: The issues 31 parent dyads identified for interactive problem-solving at either or both infants aged 2 and 6 months were typed as caregiving or relational/support. The parent dyad's interactive competencies were assessed from video recording for two types of tasks (i.e., caregiving and the parent dyad's relationship as caregivers). Constructs of Iowa Family Interaction Rating Scales were applied to assess the competencies of mothers, fathers, and the parent dyad for a group that received guided participation (n = 17) and a group that received usual care (n = 8). Results: Pie charts showed feeding, most frequently identified for interactive problem-solving at 2 months, was surpassed at 6 months by growth and development. The time parents spent together was the most mentioned relationship issue at 2 and 6 months. Forest plots showed caregiving issues were associated with at least medium effect sizes for dyadic problem-solving for both parents at 2 and 6 months and for problem-solving for fathers at 2 and 6 months. Relational/support issues were associated with higher hostility and communication hindering than caregiving issues. Implications for Practice: Intervention to aid parents in interactive problem-solving for both caregiving and relationship/support issues merits development and testing.

Applying the Theory of Guided Participation to Clinical Practice.

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.

Guided Participation for Clinical Practice: A Middle-Range Theory of Teaching and Learning.

Theory of guided participation for clinical practice presents teaching and learning in the context of the teacher and learner relationship. The teacher functions as a guide bringing the learner as a participant into a reciprocal, dynamic process that addresses issues learners are working on, acknowledging and directing learning activity to personal and clinical goals. Outcomes of this process are competencies in health-related functions. The process proceeds with understanding of the learner's internal working model (IWM) of self, other, and relationships. The IWM goals, intentions, and expectations formulate guided participation processes for development of competencies specific to the learner's cultural and personal situation and health need.

Guided Participation Support of Coparenting an Infant With Complex Congenital Heart Disease: A Randomized Pilot Feasibility Study.

Background and Purpose: Parents' competencies in coparenting are critical to adaptive and competent caregiving of an infant with complex congenital heart disease. To date, feasible interventions to support parents in working together-coparenting-for caregiving of these infants have not been developed and systematically examined. The purpose of this feasibility study was to examine the efficacy of the participatory teaching/learning intervention, Guided Participation (GP) on parent dyads' competencies in interactive problem-solving tasks in preparation for a randomized controlled trial. Methods: Nurse guides used GP to support mother and father couples in developing coparenting competencies through the first 6 months after birth. Couples, enrolled from two regional heart centers, were randomly assigned either to the usual care group (n = 10) or the GP group (n = 24). Intervention involved nurse guided GP in hospital and, following the infant's discharge, monthly telephone GP sessions between 2-months and 6-months infant age. In-home data collection visits at 2 and 6 months included video-recorded parent interaction problem-solving tasks with two goals, infant caregiving and the parent couple's relationship. The Iowa Family Interaction Rating Scales were used to score observed interactive competencies. Results: Retention was 82%, and results revealed small to moderate effect sizes for GP on problem-solving constructs for mothers and for the parent couple dyad. Implications for Practice: Our findings support further study in a fully powered randomized trial with a more diverse sample, handbook-enhanced GP, and examination of the effect on a broader spectrum of outcomes, including infant growth and development.

Parenting styles and dimensions in parents of children with developmental disabilities.

Parenting influences child development. There is limited research, however, related to parenting children who have developmental disabilities. The aims of this study were to: (1) describe the parenting styles and dimensions of parents of children with developmental disabilities and (2) assess differences in parenting styles and dimensions among parents of children with autism spectrum disorder (ASD), Down syndrome (DS), and spina bifida (SB). Secondary data analysis was conducted from a nationwide cross-sectional study of 496 parents of children aged 5-16 years with ASD (n = 180), DS (n = 156), or SB (n = 160). Parent scores indicated high use of the authoritative parenting style and associated parenting dimensions, mid-to-low use of the permissive parenting style, and low use of the authoritarian parenting style and associated dimensions. Variation in parenting styles and dimensions among parents was primarily related to the child's diagnosis and family income. An unanticipated but positive finding was that parents with lower family incomes had significantly higher scores for the authoritative parenting style. Results from this study can inform future research that might inform clinical practice.

Parents' Interactive Problem-Solving Behavior and Emotion Studied With Audio Compared With Video Source.

BACKGROUND AND PURPOSE: Parents' communication and problem-solving interaction with each other and with clinicians influences the caregiving of infants with a chronic health problem, making in-depth study of this interaction critical for design of interventions to support caregiving. This study, however, has been severely limited by lack of observational methods that can be applied in home, clinic and community settings. The Iowa Family Interaction Rating Scales provide comprehensive description of communicative and problem-solving behavior and emotion, but have only been applied to video-recorded interaction. Audio recording, in contrast to video recording, has the advantage of being unobtrusive, readily accessible, and generally acceptable, increasing the opportunity for focused examination and intervention of parents' interaction with each other or with clinicians. Our study objective was to examine the agreement of scores obtained on parents' interactive problem-solving behavior coded with the Iowa Family Interaction Rating Scales using an audio-recorded source for coding compared with coding from a video-recorded source. METHOD: In secondary analysis, audio-recordings were derived from video recordings of 15 parent-parent interactions. Audio recordings were created and coded blind of the original video recording and coding. RESULTS: Using Gwet's AC1 coefficient, agreement was at least moderate (0.61 - 0.80) for 69.1% of paired codes, signifying reliability of coding from audio recording for most codes. IMPLICATIONS FOR PRACTICE: Selected Iowa Family Interaction Rating Scales can be used with acceptable reliability for coding parents' interactive problem-solving behavior from audio source, advancing the study of parent interactive-problem solving behavior and potentially parents' problem solving with clinicians.

Prenatal Motivation for Caregiving Issues: A Pilot Study of Mothers Expecting Healthy Infants and Infants With Complex Congenital Heart Disease.

BACKGROUND AND PURPOSE: The prenatal preparing women do for infant caregiving is understudied. In this pilot, multimethods study, we examined motivation for preparing for infant caregiving of women in their third trimester of pregnancy expecting either a healthy infant or an infant with complex congenital heart disease (CCHD). METHODS: Eleven women expecting a healthy infant and four expecting an infant with CCHD completed a questionnaire and were interviewed. Preparing was reported in context of expectations, intentions, and goals and in personal, family, and infant conditions. Motivation for preparing was expressed through an interview about caregiving issues women were working on. Intensity of motivation was estimated by self-report of the time infant caregiving issues were in thought or action. Effect sizes were calculated for between group differences in motivation intensity. Interview data were examined with directed content analysis. RESULTS: Intensity of motivation was higher for women expecting an infant with CCHD for issues of Knowing What and How to prepare. Women expecting an infant with CCHD reported uncertainty about how they would feed their babies given their health condition. Interviews yielded new motivations encompassing issues of family and working with the parent partner. IMPLICATIONS: Assessment of issues women are working on prenatally, indicating motivations for preparing for infant caregiving, and of the intensity of motivations advances culturally-attuned and family-centered preparation. Knowledge of these issues and motivation intensity could orient clinical care to supporting women in developing well-informed expectations, intentions, and goals culturally suited to postnatal learning and infant needs.

Relationship between Stress and Feeding Behaviors in Parents of Children with Developmental Disabilities.

Background: Controlling feeding practices are associated with negative child eating behaviors and an increased risk of obesity. Parental stress may be related to feeding practices. Children with developmental disabilities have increased obesity prevalence, and families may also experience increased stress. This study examined the relationship between family stress and parental feeding practices in children with developmental disabilities and how concern for the child's weight may moderate this relationship. Methods: Secondary analysis using a descriptive cross-sectional design was employed. Parents of children aged 5 to 15 years, with autism spectrum disorder (ASD), Down syndrome (DS), or spina bifida (SB) were recruited nationally. Demographics, the Child Feeding Questionnaire, and the Questionnaire on Resources and Stress were completed online. Analysis included regression with an empirical Bayesian effects model. Results: Five hundred twenty-three parents, 186 (ASD), 173 (DS) and 164 (SB), participated. Family stressors were associated with the use of controlling feeding practices. Direct effects included: (1) physical incapacitation on restriction and pressure to eat (ASD and DS); (2) pessimism (ASD) and concerns about child overweight (SB) on pressure to eat; and (3) parent/family problems on restriction (DS). Concern for child overweight moderated these relationships and resulted in two interactions (DS and SB). Conclusion: Understanding the relationship of family stressors with parental feeding practices and the role of parental concern for child overweight can potentially optimize feeding in this high-risk population. This study highlights the need to provide family-centered care with awareness of stress and its potential association with daily activities and children's health.

Feeding infants with complex congenital heart disease: a modified Delphi survey to examine potential research and practice gaps.

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.

Patterns of Growth and Nutrition From Birth to 6 Months in Infants With Complex Congenital Cardiac Defects.

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.

Collaborative caregiving of parents who have an infant with congenital heart disease.

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.

An exploration of co-parenting in the context of caring for a child prenatally diagnosed and born with a complex health condition.

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.

Motivations and Features of Co-Parenting an Infant With Complex Congenital Heart Disease.

This study described co-parenting motivations and quality of co-parenting features for parents of infants with complex congenital heart disease (CCHD), including differences over time by illness severity. Existing transcripts of parenting experience at infant age 1 and 12 months for 23 parent couples were analyzed using directed content analysis. Data were quantitized for additional description. Six co-parenting motivations and five co-parenting features were identified. Two co-parenting motivations had not been previously described: Developing the Co-Parenting Relationship and Maintaining the Couple Relationship. Variability in quality of co-parenting features was evident. However, the majority of parents showed high ratings. Motivations and quality of co-parenting features changed over time and were related to illness severity. Our findings increase the understanding of what parents are working on as a couple to parent an infant with CCHD and the quality of this co-parenting. Several questions for further study are presented.

Effectiveness of an internet-based education on maternal satisfaction in NICUs.

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.

Implementing Co-Regulated Feeding with Mothers of Preterm Infants.

PURPOSE: The purpose of this study is to describe implementation of the Co-Regulated Feeding Intervention (CoReg), when provided by mothers and guided by intervention nurses trained in methods of guided participation (GP). Co-regulated feeding intervention aims to prevent stress during feeding and ease the challenge very preterm (VP) infants experience coordinating breathing and swallowing during the early months. Guided participation is a participatory learning method to guide the complex learning required for mothers. STUDY DESIGN AND METHODS: Sixteen mothers of 17 VP infants participated. Each mother received a median of five intervention sessions during the infant's transition to oral feeding. Intervention field notes, audio recordings of the sessions, and video recordings of the nurse-guided feedings were reviewed, organized, and content analyzed to evaluate implementation. RESULTS: The co-regulated feeding intervention was well received by mothers; enrollment, participation, and retention rates were high. Most mothers chose to spread out the intervention sessions across the transition period. Scheduling sessions was the greatest barrier. Mothers had competing demands and infant readiness to eat could not be predicted. The top five issues identified as needing attention by the mother or nurse included reading cues, coregulating breathing, providing motoric stability, regulating milk flow, and providing rest periods. Main GP strategies included joint attention with the mother to the dyad's feeding challenges, auditory assessment of breathing and swallowing, and reflection with planning for future feedings using video playback. CLINICAL IMPLICATIONS: Nurse presence while mothers feed affords rich opportunities to guide coregulated, cue-based feeding. Co-regulated feeding intervention would be enhanced if mothers are guided by the bedside nurse.

Walking the "Emotional Tightrope" From Pregnancy to Parenthood: Understanding Parental Motivation to Manage Health Care and Distress After a Fetal Diagnosis of Complex Congenital Heart Disease.

Advances in medical technology account for increasingly more couples receiving fetal diagnoses of complex congenital heart disease. Theory on internal working models of caregiving during parenting transitions informed this prospective, exploratory study. Data included conjoint interviews and measures of anxiety, trauma, and depression collected from six couples after diagnosis and after birth. Severity of illness was described using infant health records. Directed content analysis furthered understanding of the caregiving motivation to manage health care that included three categories of parental efforts: (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Synthesis of qualitative findings transformed into categorical ratings with parents' levels of distress resulted in two profiles characterizing types of internal working models. Findings extend theory on internal working models of caregiving and offer direction for future research regarding parental management of health care for their chronically ill offspring. Implications for practice with families are offered.

Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly.

Using a cross-sectional, grounded dimensional analysis study design, we collected demographic and health information and conducted telephone interviews with 37 expectant parents of 26 fetuses within 25 families. We describe a theoretical model with a core process of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly. The process of preparing was influenced by fetal and future child health, experiences of previous loss, and social interactions within both new and familiar settings. Expectant parents reported varying turning points and strategies associated with three distinct trajectories of relating to the fetus or "baby" yet to be born. These relational trajectories include claiming the child as one's own, delaying the connection to the fetus, and doing the routine of pregnancy. With the findings presented in this article, we extend the understanding of how parenting develops during pregnancy in the context of a fetal anomaly.

Sequential observation of infant regulated and dysregulated behavior following soothing and stimulating maternal behavior during feeding.

PURPOSE: To describe maternal behaviors occurring before infant regulated or dysregulated behavior at three times in early infancy and examine behavioral patterns over time with their prematurely born infants. DESIGN AND METHODS: Video recordings of 37 dyads were coded on infant regulated and dysregulated behaviors following maternal soothing and stimulating behaviors. RESULTS: At each time, infants showed more regulation after maternal soothing than after maternal stimulating. Further study is merited. PRACTICE IMPLICATIONS: Knowing infant regulation and dysregulation following categories of maternal behavior could help mothers anticipate infant regulatory or dysregulatory behavior in response to their own behavior and identify supportive caregiving strategies.

Impact of an internet-based intervention on Finnish mothers' perceptions of parenting satisfaction, infant centrality and depressive symptoms during the postpartum year.

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.