Anne Chevalier McKechnie

When the Cystic Fibrosis Label Does Not Fit: A Modified Uncertainty Theory:

In this grounded, dimensional analysis we describe the experiences of five couples whose infants had equivocal diagnostic test results following positive genetic newborn screens for cystic fibrosis. We analyzed interview data collected at two points during each infant’s first year. Uncertainty emerged as the central thematic dimension. Results showed that parents passed through a series of stages similar to the process described in Mishel’s Uncertainty in Illness Theory (UIT), thus extending the application of the theory to circumstances in which the very presence of an illness is uncertain. Findings informed a modified version of the UIT comprised of five domains: stimuli frame, degree of uncertainty, opportunity— danger continuum, affective responses, and coping. This model incorporates Morse’s conception of suffering. Three contextual domains influenced parents’ experiences at various junctures along the uncertainty trajectory: individual characteristics, structure providers, and time. We discuss implications of the model for future research and clinical practice relative to genetic testing.

Preparing Heart and Mind Following Prenatal Diagnosis of Complex Congenital Heart Defect

Drawing on attachment and caregiving theory and the concept of motivation, the purpose of this descriptive study was to examine parents’ retrospective accounts of their prenatal experiences after receiving the diagnosis of a fetal heart defect. These parents constituted a subgroup of participants in a larger longitudinal study of parenting an infant with a complex congenital heart defect. Data were derived from 14 semistructured interviews with 13 mothers and 3 fathers in the home or hospital setting. A directed content analysis yielded a central category of preparing heart and mind for infant caregiving. Preparing heart and mind is a preliminary caregiving goal within the caregiving system that generates intentions and expectations indicative of specific caregiving motivations to relate to the baby, handle circumstances practically, and manage infant medical care. A theoretical model illustrates the prenatal process these parents engaged in to provide care to their infants with life-threatening medical conditions.

Task-Oriented and Bottle Feeding Adversely Affect the Quality of Mother-Infant Interactions After Abnormal Newborn Screens

Objective: To examine effects of newborn screening and neonatal diagnosis on the quality of mother-infant interactions in the context of feeding. Methods: Study compared the quality of mother-infant feeding interactions among 4 groups of infants classified by severity of newborn screening and diagnostic results: cystic fibrosis (CF), congenital hypothyroidism, heterozygote CF carrier, and healthy with normal newborn screening. The Parent-Child Early Relational Assessment and a task-oriented item measured the quality of feeding interactions for 130 dyads, infant ages 3 to 19 weeks (M = 9.19, SD = 3.28). The Center for Epidemiologic Studies Depression Scale and State-Trait Anxiety Inventory measured maternal depression and anxiety. Results: Composite Indicator Structure Equation Modeling showed that infant diagnostic status and, to a lesser extent, maternal education predicted feeding method. Mothers of infants with CF were most likely to bottle feed, which was associated with more task-oriented maternal behavior than breastfeeding. Mothers with low task-oriented behavior showed more sensitivity and responsiveness to infant cues, as well as less negative affect and behavior in their interactions with their infants than mothers with high task-oriented scores. Mothers of infants with CF were significantly more likely to have clinically significant anxiety and depression than the other groups. However, maternal psychological profile did not predict feeding method or interaction quality. Conclusions: Mothers in the CF group were the least likely to breastfeed. Research is needed to explicate long-term effects of feeding methods on quality of mother-child relationship and ways to promote continued breastfeeding after a neonatal CF diagnosis.

Factors Associated With Parental Perception of Child Vulnerability 12 Months After Abnormal Newborn Screening Results

We identified factors associated with elevated parental perceptions of child vulnerability (PPCV) 12 months after newborn screening (NBS) of 136 children: healthy, normal results (H, n = 37), cystic fibrosis carriers (CF-C, n = 40), congenital hypothyroidism (CH, n = 36), and cystic fibrosis (CF, n = 23). Controlling for infant and parent characteristics, mixed logit structural equation modeling showed direct paths to elevated PPCV included parent female sex, CF diagnosis, and high documented illness frequency. PPCV was positively associated with maternal parenting stress. Infants with CF and CF carriers had significantly more documented illness frequency than H group infants. The CH group did not differ significantly from the H group and had no paths to PPCV. Unexpectedly high documented illness frequency among infants who are CF carriers warrants further investigation.

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.

Maternal Variables Influencing Duration of Breastfeeding Among Low-Income Mothers

This study used a retrospective comparison of 2 naturally occurring groups, first to examine how exclusive versus partial breastfeeding relates to duration of breastfeeding and, second, to determine if factors such as age and body mass index are associated with exclusive versus partial breastfeeding duration. These factors were hypothesized to influence the amount of breastfeeding in a sample of 42 low-income mothers enrolled in the Supplemental Nutrition Program for Women, Infants, and Children of a predominately rural, Midwestern county. This study examined de-identified data from a state database spanning a calendar year. Breastfeeding behavior, age, and body mass index measurements for mothers giving birth within the first 6 months of that year were analyzed. Exclusive breastfeeding mothers breastfed longer, were of older age, and had lower body mass indexes than partial breastfeeding mothers. These findings further describe characteristics of low-income breastfeeding women. Understanding how factors associated with exclusive versus partial breastfeeding affect breastfeeding duration may inform clinicians and researchers of areas for future interventions.

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 infants 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 dyads 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.

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.

Mothers’ Perspectives on Managing the Developmental Delay of a Child With Considerations for Contextual Influences and Maternal Functioning

Developmental delay in very young children is trending upward. Maternal depressive symptoms are known to negatively impact child development and may also impact family management of the child’s condition. Research on family management guided this second phase of a sequential mixed methods study. The purpose of this study was to explore mothers’ perceptions of family management of their children’s developmental delays. Mothers of very young children who received early intervention services were interviewed. A team-based content analysis approach revealed key findings: (a) views of the child that were not holistic, (b) condition management ability was informed by what the mother thought her child needed, (c) views of condition impact were related to adapting to possible child outcomes and experiences of isolation, and (d) parental/caregiver mutuality was impaired by conflict. Understanding perceptions of family management and influence of depressive symptoms in this context is essential to extend assessment and intervention.