Birth of a child with congenital heart disease: emotional reactions of mothers and fathers according to time of diagnosis

Abstract

Objective: To evaluate emotional distress, depression and quality of life in parents of infants with severe congenital heart disease (CHD) during their first hospitalization.

Methods: A pilot study for 38 parental couples of infants with CHD hospitalized within the 3 months of life. Parents filled up three self-administered questionnaires. We compared differences in the variables measuring emotional distress, depression and quality of life between mothers and fathers, and between prenatal and postnatal diagnosis.

Results: Stress and depression levels were significantly higher in mothers than in fathers (stress: 81.8% mothers versus 60.6% fathers; depression: 45.7% mothers versus 20.0% fathers). No difference were found between prenatal and postnatal groups in any field tested but, in percentage, mothers receiving prenatal diagnosis were more depressed, whereas those receiving postnatal diagnosis were more stressed. Fathers showed same tendency.

Conclusions: Parents of newborns with severe CHD, especially mothers, need psychological support during their child’s hospitalization. Parents of children diagnosed prenatally may need counseling throughout pregnancy to help them recover from the loss of the imagined healthy child.     

Parental Involvement in Neonatal Comfort Care

ObjectiveTo explore how parents interact with their infants and with nurses regarding the provision of comfort care in a Neonatal Intensive Care Unit (NICU).DesignFocused ethnography.SettingA regional NICU in the United Kingdom.ParticipantsEleven families (10 mothers, 8 fathers) with infants residing in the NICU participated in the study.MethodsParents were observed during a caregiving interaction with their infants and then interviewed on up to four occasions. Twenty‐five periods of observation and 24 semistructured interviews were conducted between January and November 2008.ResultsFive stages of learning to parent in the NICU were identified. Although the length and duration of each stage differed for individual parents, movement along the learning trajectory was facilitated when parents were involved in comforting their infants. Transfer of responsibility from nurse to parents for specific aspects of care was also aided by parental involvement in pain care. Nurses’ encouragement of parental involvement in comfort care facilitated parental proximity, parent/infant reciprocity, and parental sense of responsibility.ConclusionFindings suggest that parental involvement in comfort care can aid the process of learning to parent, which is difficult in the NICU. Parental involvement in infant comfort care may also facilitate the transfer of responsibility from nurse to parent and may facilitate antecedents to parent/infant attachment.     

Experiences of Parents Whose Newborns Undergo Hypothermia Treatment Following Perinatal Asphyxia

ObjectiveTo describe and interpret experiences of parents whose newborns are treated with induced hypothermia following perinatal asphyxia.DesignA qualitative exploratory study.SettingData collection in parental home environments (n = 8) and in a study room in a university library (n = 2).ParticipantsA total of 10 parents, seven mothers and three fathers, participated in the study. Their newborns were treated with induced hypothermia 4 to 12 months prior to the interviews.MethodsRecorded open‐ended interviews with the participants lasted from 60 to 90 minutes. Field notes were made after each interview. The interviews were transcribed verbatim and inductive content analysis was used in the analyzing process.ResultsFour main themes emerged from the data: emotional landscapes, adaptation to a new situation (with subthemes creating control, external and internal support in a difficult situation, normalizing the abnormal and reconciling oneself to uncertainty), moments of rebirth, and change in attitude toward life and existence.ConclusionTerm newborns are treated with induced hypothermia treatment due to perinatal asphyxia. During the hospitalization of newborns in neonatal intensive care units (NICUs), parents experience high levels of stress. Parents use several strategies for adapting to this situation, and nurses play a pivotal role in providing individual support and acting as advocates for parents in the NICU. After the infants are rewarmed, parents experience a moment of rebirth that might help them attach to their infants. Further research is warranted in this area to provide holistic care and support to families whose neonates undergo this treatment.     

Comparison of psychosocial adjustment of mothers and fathers of high-risk infants in the neonatal intensive care unit.

OBJECTIVE: To compare the psychosocial adjustment of mothers and fathers to the birth of a premature or critically ill infant hospitalized in the neonatal intensive care unit (NICU). STUDY DESIGN: Using a comparative design, we studied 165 mothers and father pairs of high-risk neonates. Mothers were 29.1 +/- 6.7 and fathers were 30.7 +/- 6.8 years old. All infants were hospitalized in the NICU. Couples completed questionnaires in either English or Spanish during the infant's NICU stay. RESULTS: Mothers were more poorly adjusted and were more anxious, hostile, and depressed than fathers, but both parents experienced levels of emotional distress significantly above normative values. Mothers and fathers reported equal levels of family functioning and social support and shared similar feelings of control related to the health status of their infant. CONCLUSION: The birth of an infant who requires care in the NICU environment is highly stressful for both parents. Physicians, nurses, and other health professionals working in the NICU should assess the psychosocial adjustment in both parents, but mothers may require more intense education and counseling to reduce the distress they experience.     

Clinical Determinants of Parents’ Emotional Reactions to the Disclosure of a Diagnosis of Congenital Anomaly

ObjectiveTo examine parents’ emotional reactions (high intensity vs. low intensity) and the intensity of each emotion when a prenatal or postnatal diagnosis of a congenital anomaly is disclosedDesignCross‐sectional study.SettingTwo urban Portuguese hospitals.ParticipantsThe parents (60 mothers and 50 fathers) of 60 infants prenatally or postnatally diagnosed with a congenital anomaly.MethodsOne month after the disclosure of the diagnosis, the parents answered questionnaires regarding sociodemographic and clinical variables and their emotional experiences at the disclosure.ResultsGender differences in the parents’ emotional reactions were not found, and intracouple congruence was frequent. When there was uncertainty regarding the diagnosis, no prior knowledge about the diagnosis (for fathers only), and no history of pregnancy loss (for mothers only), parents presented significantly more frequently with a pattern of high‐intensity negative emotional reactions to the disclosure. Type of congenital anomaly, timing of diagnosis, and parity were not found to be significantly associated with the patterns of emotional reactions, but differences in the intensity of specific emotions were found for all variables.ConclusionBoth parents’ emotional experiences should be acknowledged at the disclosure. Clinical variables were found to define the stressful situation (the diagnosis). When the diagnosis was perceived as more threatening (i.e., more unexpected, less controllable, and predictable), parents presented a pattern of high‐intensity emotional reactions.     

A Tool for Educating Parents About Their Premature Infants

ABSTRACT: This study examined the effectiveness of intervening with parents of premature infants by showing them examples of newborns' sensory, perceptual, and social capabilities. Fourteen couples and their premature infants, divided into an intervention group and a nonintervention group, were studied. Parents in the intervention group observed an assessment of premature infant behavior (APIB) examination and received feedback from the examiner prior to completing a parental assessment battery; the nonintervention group did not observe the APIB examination until after they completed the assessment battery. The assessment battery measured parental anxiety, perceptions, and awareness of neonatal behavior. Comparisons between the two groups revealed (a) intervention fathers reported significantly lower anxiety than did nonintervention fathers, (b) intervention mothers and fathers had significantly more realistic perceptions of their newborn compared to nonintervention parents, and (c) intervention mothers had significantly more accurate awareness of their newborns' abilities than nonintervention mothers, and intervention fathers had higher, but nonsignificant, awareness scores compared to nonintervention fathers. Having parents observe the administration of the APIB may be an effective way to educate them about their premature infant's behavior.     

Guilt,shame and fear of death predict neonatal intensive care unit-related parental distress

Objective: To explore the relationship between parents’ personality proneness to negative self-conscious emotions (guilt, shame and fear of death) and the stressfulness associated with their newborn’s hospitalisation in a neonatal intensive care unit (NICU). Background: Parents commonly blame themselves for their newborn’s hospitalisation and this self-blame may be characterological (shame-based) and/or behavioural (guilt-based) in type. The NICU experience may threaten parents’ cultural worldviews and self-worth, thereby making it mortality-salient. Method: Self-report questionnaires were used to measure NICU-related parental distress, guilt, shame and fear of death in 88 mother–father dyads. The Actor–Partner Interdependence Model method of dyadic analysis was used to measure actor (intrapersonal) and partner (interpersonal) self-conscious emotion effects with parental distress. A mediation analysis was performed to determine if fear of death mediated the relationship of guilt and shame with parental distress. Results: Shame and fear of death had significant actor effects with mothers’ and fathers’ distress, whereas chronic guilt had a significant actor effect with mothers’ distress. None of the partner effects was statistically significant. Overall, these self-conscious emotion predispositions explained 21% of the variance in mothers’ distress and 28% of the variance in fathers’ distress. Fear of death partially mediated the relationship of chronic guilt and shame with parental distress. Conclusion: Personality proneness to chronic guilt, shame and especially fear of death predicted NICU-related parental distress. These self-conscious emotions are aversive and parents may be reluctant to disclose them, yet emotional disclosure may benefit parents’ short- and long-term physical and psychological health.     

FIRST-TIME FATHERS' CHILDBIRTH EXPERIENCE

Twenty first-time fathers who had attended prenatal classes were interviewed before and after attending their wives' childbirth to determine the father's special needs at this time. The same fifty-item questionnaire was utilized in both the predelivery and the postdelivery interviews. Motivation for involvement in childbirth was explored in the predelivery interview. The most frequent motivations for involvement in childbirth were “to share the birth,” and “to enhance the couple relationship.” The responses differed little in the pre- and postdelivery interviews. In the postdelivery interview, more fathers wanted to know the baby's condition as soon as possible after birth and wanted to have the nurse at their wives' bedside as much as possible during labor. Most of the fathers had high needs for understanding, nurturance, and deference during labor. Most fathers wanted the nurses to take care of their emotional needs rather than their physical needs (hunger and rest). Assisting their wives in labor was considered to be a great achievement by the fathers. Few fathers felt overpowered or anxious about the environment of the labor suite or the birth itself. This study concluded that further research with fathers who do not attend prenatal classes was needed.     

Maternal Satisfaction with Administering Infant Interventions in the Neonatal Intensive Care Unit

ObjectiveTo examine mothers’ satisfaction with administering interventions for their preterm infants and with the helpfulness of the study nurse by comparing massage with auditory, tactile, visual, and vestibular stimulation (ATVV intervention), kangaroo care, and education about equipment needed at home and to explore whether mother and infant characteristics affected maternal satisfaction ratings.DesignThree‐group experimental design.SettingFour neonatal intensive care units (NICUs) (two in North Carolina, two in Illinois).ParticipantsTwo hundred and eight (208) preterm infants and their mothers.MethodsWhen the infant was no longer critically ill, mother/infant dyads were randomly assigned to ATVV, kangaroo care, or the education group all taught by study nurses. At discharge and 2 months corrected age, mothers completed questionnaires.ResultsAll groups were satisfied with the intervention and with nurse helpfulness, and the degree of satisfaction did not differ among them. Intervention satisfaction, but not nurse helpfulness, was related to recruitment site. Older, married, and minority mothers were less satisfied with the intervention but only at 2 months. Higher anxiety was related to lower intervention satisfaction at discharge and lower ratings of nurse helpfulness at discharge and 2 months. More depressive symptoms were related to lower nurse helpfulness ratings at 2 months.ConclusionsMothers were satisfied with interventions for their infants regardless of the intervention performed. Maternal satisfaction with the intervention was related to recruitment site, maternal demographic characteristics, and maternal psychological distress, especially at 2 months. Thus, nursing interventions that provide mothers with a role to play in the infant's care during hospitalization are particularly likely to be appreciated by mothers.     

Integrative Review of Parents’ Perspectives of the Nursing Role in Neonatal Family-Centered Care

ObjectivesTo identify the perceptions of mothers and fathers of newborns admitted to NICUs regarding the role of neonatal nurses in the provision of family-centered care and how neonatal nurses were able to interpret and meet parents’ needs.Data SourcesWe conducted literature searches in the CINAHL, MEDLINE, Embase, PsycINFO, Dissertations and Theses Global, and Maternity and Infant Care databases.Study SelectionArticles on qualitative and quantitative studies were selected if they were published in English from 2009 to 2018; they were set in countries with similar health care resources in Australasia, Canada, Europe, Scandinavia, the United Kingdom, and the United States; and the data were collected from parents. We identified 31 studies for analysis.Data ExtractionWe used the thematic analysis method of Braun and Clarke to extract data elements that were grouped and coded into themes and subthemes.Data SynthesisThrough ongoing iterative analysis, we generated six themes from the 18 subthemes that in combination presented the experiences of parents in the context of family-centered care provided by neonatal nurses: Process of Becoming a Parent, Neonatal Nurses Supporting Parents, Infant Safety, Communication, Barriers to Parenting, and Parenting Inhibited by Neonatal Nurses.ConclusionThe six themes reflected the contribution made by neonatal nurses to family-centered care in the NICU. The parents’ perspectives of nurses were mostly positive, but some negative aspects attributed to nurses identified in earlier studies persisted.     

Unanticipated Cesarean Birth from the Father's Perspective

ABSTRACT: Despite the paucity of research on men's experiences of cesarean birth, fathers' attendance at cesareans has become well-established in some areas of the U.S. In this study, interviews were conducted with 46 fathers whose wives had an uncomplicated pregnancy culminating in an unanticipated cesarean birth with a healthy neonate and no major complications for mother and child. Interviews were tape recorded, transcribed and analyzed. Of these 46 fathers, 52 per cent attended the cesarean, and 48 per cent did not, primarily because hospital policy prohibited it. Fathers' predominant emotional reaction to the decision for cesarean was relief (52%); 27 per cent described their reactions as acceptance, 10 per cent expressed moderate disappointment, and 11 per cent were strongly disappointed or angry. Most negative reactions centered not on the cesarean itself, but on policies which excluded fathers from attendance arbitrarily, and on staff behaviors which reflected disregard for the fathers'need to feel included in the birth, whether they were permitted to attend the delivery or not. Seventy per cent of these fathers expressed some displeasure at physician or nurse behaviors, expressing disappointment and resentment about being excluded from discussions leading to the decision for the cesarean, having little previous contact with the obstetrician, the nursing staff failing to provide the father with adequate information and support during and immediately after the cesarean, and being denied access to the wife and infant after the cesarean for apparently arbitrary reasons.     

Pregnancy Intentions among Expectant Adolescent Couples

Study ObjectiveTo examine the self-reported pregnancy intentions of the male partners of expectant adolescent mothers, the accuracy of adolescent mothers' perceptions of their partner's pregnancy intentions, and the concordance between young mothers' and fathers' pregnancy intentions.DesignThis cross-sectional pilot study collected interview data from expectant adolescent mothers and their male partners.SettingData were collected in participants' homes.Participants35 expectant couples were interviewed separately. Most participants were African American (89% of mothers, 74% of fathers). 69% of mothers were 17-18 years old, and half of the fathers were ≥19.Main Outcome MeasuresParents responded to survey questions adapted from the Center for Disease Control and Prevention's Pregnancy Risk Assessment Monitoring System Questionnaire.Results44% of fathers reported wanting their partner to get pregnant. Another 15% were ambivalent. A kappa statistic of 0.12 (P = .33) indicated very little “accuracy” of mothers' perceptions of their partners' pregnancy intentions. Further, there was low concordance between the pregnancy intentions of mothers and fathers. Young fathers who wanted or were ambivalent about pregnancy were significantly more likely to use no contraception or withdrawal.ConclusionFor a notable number of minority couples, adolescent mothers do not have an accurate perception of their partners' pregnancy intentions and use contraceptive methods that are not within their control. These findings indicate that teen pregnancy prevention interventions must target young males in addition to females and sexually active adolescents should be encouraged to discuss pregnancy intentions with each other.