Families discovering asthma in their high-risk infants and toddlers with severe persistent disease

Interpretive phenomenology was used to discover the earliest experiences of families of children younger than 4 years hospitalized for severe persistent asthma. The children who were African American or Latino and living in poverty were at highest risk of morbidity and mortality. Three families with distinctly varied responses to early symptoms were chosen from an investigation of 11 families for this study. Each gave three home interviews and participated in home observations. All families experienced life-changing responses to their children's distressed breathing. All had experienced asthma in themselves or others that shaped their beliefs and management patterns. Family experiences prior to and following diagnosis are discussed. Findings suggest that understanding these experiences and respecting families' earliest responses will help clarify established family management patterns for severe asthma in infants and toddlers and will enhance the ability of providers to guide the care of these families and children.     

The individuals with disabilities education act: Taking a proactive role in early intervention

With increased medical advances and technology, more infants and toddlers who are born with or at risk for disabilities are surviving and going home. It is essential for nurses who work with these families and children to understand Part C (formerly Part H) of the Individuals with Disabilities Education Act (IDEA) and the importance of accessing early intervention (EI) in a timely manner. Services that are provided through EI make a positive contribution to the overall growth and development of children, birth through age 2, with or at risk for disabilities. This article explains EI from the perspective of the final federal regulations for IDEA (Pub L No. 105-17) Part C, the nurse's role in helping families access services, and the increased emphasis on the family-centered approach. Nurses have a crucial role in the early identification and referral of infants and toddlers who are eligible for EI services. Copyright © 2001 by W.B. Saunders Company     

The care of infants menaced by cocaine abuse

The newborn's symptoms of prenatal drug exposure threaten attachment. Consequently, psychosocial progress is impeded. Early intervention provides hope for these infants.     

Pilot study of low-income parents' perspectives of managing asthma in high-risk infants and toddlers

This pilot study describes the challenges low-income parents face in managing asthma in their infants and toddlers who are at high risk of morbidity due to asthma. Five families of children younger than 3 years and recently hospitalized for asthma were interviewed from 1 to 5 times and asked to give narratives about the everyday management of asthma in their high risk infants and toddlers. Interpretive phenomenology was used as the method to describe parents' perspectives on managing the illness. The parents, all single mothers, struggled to manage asthma in crowded conditions, with limited transportation for frequently needed emergency care, and in face of the complicating needs of other children and family members. Not knowing then knowing the diagnosis, and provider availability and lack of availability were two dichotomous challenges mothers faced when managing asthma in their very young children.     

Patterns of medical services utilization by infants discharged from a neonatal intensive care unit

A decreasing neonatal mortality rate has increased the number of infants who survive their stay in a neonatal intensive care unit only to need continued medical care. Medical services utilization by families with high-risk infants has been widely studied, but research is sparse on high-risk infants who do not receive follow-up care through medical specialists' services or speciality clinics. After dividing medical services utilization into four patterns, ranging from use of only primary care to use of three kinds of medical services, the authors analyzed a set of predictors of utilization. The factors most likely to affect pattern of utilization significantly are related to health need and illness level. The infants with more serious medical conditions diagnosed at birth were found to use the most follow-up services. No effects of location of residence or social class were found, which suggests that families had no significant problems of access to medical care services for their infants in the defined region of the study.     

Developmentally supportive care in the newborn intensive care unit: early intervention in the community

The traditional focus of hospital nurses on the medical concerns of infants and toddlers is expanding to encompass the more global view that integrates the developmental level of each infant/toddler into the nursing care plan. Research on early brain development has supported the focus on developmentally supportive care in the NICU. Nursing support of the early relationship between infant and parent that will influence the infant's future development is part of this process. The integration of developmental care concepts including family-centered care that begins on admission to the NICU may continue into the process of discharge and transition to home. The nurse is in an excellent position to support the family in naming their concerns, their strengths, and the hopes and dreams they have for their infant. Nurses in the NICU, home care, community, and public health increasingly focus on a developmental perspective in their work but will be continually challenged to increase their knowledge and understanding of developmental milestones, neurodevelopmental assessment, and their role in collaborating with the wider world of early intervention. This collaboration includes the health care system, the educational system, and the social service system as equal players. For some nurses, this will be a new experience whereby the responsibility for the child is shared among members of an interdisciplinary team that includes the parents. Nurses are key to providing developmentally supportive care and working collaboratively on behalf of the infants and toddlers and their families.     

Care of substance-exposed infants: the current state of practice in Canadian hospitals

Many practices related to care of infants exposed to drugs and alcohol during th e prenatal period have been developed on an anecdotal basis. There are few available research studies to validate these interventions. This study describes current practices used in daily care, discharge planning, and community support for drug- and alcohol-exposed infants, their families, and alternate caregivers in one country. A survey of Canadian hospitals with annual birth rates of greater than 500 was conducted with a 51% return rate. Variations were noted in the perception of the importance of the issue of perinatal substance use, nursery care, discharge planning, and community support. Nurses are encouraged to consider these results within the context of their own communities to evaluate and develop standards of practice for substance-exposed infants and their families and caregivers.     

Stress and coping in high-risk mothers: difficult life circumstances,psychiatric-mental health symptoms,education, and experiences in their families of origin

A pilot study was conducted to test methods and measures used to assess factors related to stress and coping in high-risk mothers and their effect on parenting. Twenty mothers with 12-month-old toddlers were recruited from a WIC population; they came into an observational laboratory where they were interviewed about stressors in their lives and their symptoms of stress and were videotaped interacting with their children. Maternal difficult life circumstances, psychiatric-mental health symptoms, education, maternal experiences in their families of origin, and parenting stress explained 74% of the variance in maternal sensitive-responsiveness with their toddlers in the laboratory setting. The findings support the methods of the study. Clinical implications and implications for future research to assist in the development of interventions for this population are discussed. Increased attention to screening for maternal psychiatric-mental health symptoms and for negative experiences in mothers' families of origin may provide important opportunities for intervention with these mothers.     

Screening for infants' and toddlers' dietary quality through maternal diet

PURPOSE: To investigate the relationship of mothers' dietary quality to that of their infants and toddlers in limited-income families at risk for poor health. STUDY DESIGN AND METHODS: Secondary data analysis was conducted of dietary quality from 24-hour dietary recalls collected from 113 mother-infant/toddler pairs in limited-income families with a child at age 6 months and again at age 14 months. Dietary quality of mothers was evaluated on the basis of eating breakfast and having at least one serving of the five food groups from the Food Guide Pyramid. Diet quality of infants was determined by comparison to the Women, Infants, and Children feeding guidelines for their ages; the diet quality of the mother was then compared to that of her infant and, later, toddler. RESULTS: Most mothers and their infants had poor diet quality at the first interview. By 14 months most mothers still had poor diet quality, but diet quality for the children improved such that only about one-half remained poor. Poor diet quality of mothers was useful to detect poor diet quality for her infant or toddler showing high concordance at both interviews. CLINICAL IMPLICATIONS: A consistent marker for infants at risk for poor diet quality is having a mother who skipped breakfast and omitted fruits, vegetables, or dairy products. This could be a quick indicator to identify those at greatest risk for not following recommended guidelines in feeding their infants and toddlers.     

Measuring prenatal drug exposure

Prenatal drug exposure is an important pediatric health issue. However, the effects on children are not clear because of limitations in the way drug exposure is typically measured. For example, one cannot say cocaine causes a specific outcome if cocaine exposure is not measured accurately. Before we can determine the developmental outcomes associated with drug exposure, 4 measurement issues must be considered: (1) the amount of exposure varies greatly, such as from 1 to 709 g of crack per month; (2) exposure may vary by trimester; (3) exposure could be to one drug or multiple drugs; and (4) different sources of exposure data can be inconsistent (e.g., toxicology and maternal self-report). We use data from 248 families participating in an ongoing longitudinal study to provide concrete examples of these measurement issues. Both nursing researchers and practitioners must carefully attend to measurement issues when interpreting research on the effects of prenatal drug exposure.     

A Primary Health Care Approach Using Hispanic Outreach Workers as Nurse Extenders

Abstract In an effort to improve the health of Hispanic families, particularly prenatal women and infants, the county health department instituted a program of intensified home visits using bilingual, bicultural nurse extenders within a framework of primary health care. The outreach workers offer basic health information to improve families' skills and knowledge, and to assist with linkages to community resources. Public health nurses provide assessment, establish a plan of care, evaluate progress, and supervise the workers. The program has resulted in increased numbers of individuals receiving services, more women registering earlier for prenatal care and the Women, Infants, and Children's (WIC) program, and increased numbers of infants receiving WIC services and regular medical supervision. Public health nurses report increased knowledge and positive changes in families' health behaviors. In addition, the program has strengthened relationships between the health department and Hispanic families.     

Family Management of Infants with Fetal Alcohol Syndrome or Fetal Alcohol Spectrum Disorders

We studied the effects on family life of medical, social, and/or judiciary decisions taken when 28 infants born between 1995 and 2003 to alcohol-abusing mothers and diagnosed with fetal alcohol syndrome (FAS) or fetal alcohol spectrum disorders (FASD) were discharged from a neonatology hospital unit near Paris. Medical files of these infants and their mothers’ obstetrical files (when available) were retrieved from the hospital database; data was then collected and analyzed retrospectively. Post-discharge familial settings were established using questionnaires or telephone interviews with their doctors or the staff of the institutions where they were fostered. The 28 mothers of these FAS/FASD children all came from underprivileged backgrounds, had chronic health problems and/or lived with alcohol abusers. The neonatology team has to decide, at discharge, whether the families can provide a ‘good environment’ for their babies, if not, they refer them to the courts. In any case, the mother/parents must obey certain rules (such as respecting follow-up appointments for example). These FAS/FASD infants usually came from dysfunctional families, and at hospital discharge, 18% of them were put in care, while the mothers could be given court-approved visiting rights. When the infants lived with their biological families, the mothers’ marital situation usually deteriorated within 2 years. The mothers/parents often proved unable to look after their babies properly; this was reported to the courts, and their children put in care. Based on our results, we recommend that the current management of families with FAS/FASD children should be reviewed.     

A Review of Research on Premature Infant-Mother Interaction

Premature infants do not often provide clear behavioral cues, making them difficult social partners. Mothers of premature infants have reported that interacting with their infant is frustrating and not very rewarding. Higher numbers of premature infants are currently surviving at younger gestational ages, but the number of premature infants that have developmental delays is not decreasing. These infants and their mothers need guidance and support for their early efforts to communicate with one another. Social interactions are considered to be important for many aspects of development. This article will review the literature on infant-mother interactions, explain the more recent findings, and provide recommendations for neonatal nurses working with premature infants and their families.     

Home Intervention for In Utero Drug-Exposed Infants

ABSTRACT Each year in the United States, around 5.5% (or 230,000) infants are born to mothers who used illicit drugs during pregnancy. The untoward effects of in utero drug exposure (IUDE) include significant decreases in birthweight and length and head circumference, prematurity, and developmental problems. Intensive early intervention, including home-based interventions, is recognized as an effective method to improve cognitive development and reduce health problems in these high risk infants and children. Examination of home visit records of 20 IUDE infants during their first year of life revealed frequent health and social problems. Infectious disease symptoms were the most frequent problem encountered in the home during the physical assessment of the infants. Of note was the mothers' lack of basic parenting information (understanding signs of illness, basic nutrition, and infant development) which was then provided by the nurse during each home visit. Of concern was the lack of drug treatment sought by these mothers. Findings support the view that home visiting should be incorporated into the discharge planning of any IUDE infant in order to maintain these infants in the health care system and monitor their safety.     

Nursing Care of Families With Parents Who Are Lesbian, Gay, Bisexual, or Transgender

TOPIC:  Families in which parents are lesbian, gay, bisexual, or transgender are more diverse than they are similar. The numbers of parents and children in these families appear to be increasing with implications for nurses and other clinicians.
PURPOSE:  This paper reviews the current literature to determine the fundamental issues facing alternate families that include sexual minority parents and their children. It also explores the unique nursing needs of families with gay, lesbian, transgender, or bisexual parents in the field, which are critically examined for direct relevance to psychiatric nursing practice.
SOURCES USED:  Current theoretical and research literature in nursing, child development, family law, and healthcare professional journals.
CONCLUSIONS:  Despite a relative lack of pathology noted in the literature related to families with sexual minority parents, nurses, and other healthcare professionals can incorporate current knowledge of unique child developmental, parenting, and legal issues into their work with these families. Assessments and interventions that address the unique needs of these families may help parents and children to deal with social stress from being perceived as "different" by other children, or as "problematic and threatening" by other parents.     

Enhancing Motor Development in Infants and Toddlers: A Multidisciplinary Process for Creating Parent Education Materials

Pediatric therapists teach parents how to promote optimal movement to infants and toddlers with developmental delay. Current parent education resources for teaching motor development are dated and inconsistent with modern family centered care practice. The project was designed to develop an original series of parent education materials for infants and toddlers with developmental delay due to prematurity, abnormal tone, or generalized weakness. A comprehensive literature search was performed to determine the best method for teaching parents prior to designing a parent education program. Content experts in patient education and neurodevelopmental therapy assisted in designing the materials. Updated parent education materials that are consistent with modern family centered care practice were developed. Therapists within the Kaiser Permanente health care system can use the copyrighted parent education materials available online, and presented in this project, to assist families in becoming confident and self-reliant when working on motor development at home. Empowering the patient and family toward directed self-care is critical for achieving best outcomes for children with developmental delays.     

Marital Strife, Social Support, and the Development of Mentally Retarded Toddlers

The birth of a mentally retarded child is a stressful experience for the family. Research exploring the differences between these families based on the child's developmental competence is sparse. This study examined marital strife and social support within two groups of retarded toddlers. Data were collected through observation, an interview, and questionnaires. The focus of marital agreement and disagreement differed between the groups, as did social support. However, birth order and family life cycle stage were found to be important confounding variables.     

Preparation of occupational therapists to work in early intervention programs.

This paper presents the results of a survey of 43 occupational therapy academic programs regarding their preparation of students to work with young children with special needs. The number of instructional hours devoted to topics related to services for infants or toddlers and their families varied greatly. Some programs plan an increase in hours but are limited by the total hours available within the curriculum. This paper also shares the recommendations of a panel of occupational therapists with expertise in early intervention and entry-level education. The panel was concerned with the quality of preparation of therapists entering early intervention programs and encouraged the profession to review the amount of course work within each curriculum that introduces students to basic knowledge and skills related to early intervention. Some knowledge, such as the consultant's role and working with families of persons who are physically or mentally challenged, are common to other practice areas. The panel stressed that students be taught strategies for obtaining the training necessary for postgraduate entry into a specialty area such as early intervention.     

Retrospective video analysis of the early speech sound development of infants and toddlers later diagnosed with lateralisation errors

Abstract

Purpose: Although lateralisation errors (LEs) are a common speech sound disorder, no studies have examined their early development. The purpose of this exploratory small-scale investigation was to compare the early (birth–24 months) speech sound development between children later diagnosed with LEs and typically developing children.

Method: This was a between-group case-controlled design with six monolingual English-speaking participants. Participants were White, non-Hispanic girls with at least one college-educated parent. As children, three had been diagnosed with lateralisation speech sound errors and three demonstrated typical speech sound development. Participants’ parents provided home video-recordings of the participants as infants/toddlers between birth and age 2. These videos were then analysed for the amount, type and diversity of sounds, and canonical babbling onset.

Result: There was no statistically significant between-group difference in the volubility (i.e. combined frequency of non-resonant and resonant utterances) or in the age at which [s] or [z] emerged. However, infants/toddlers who were later diagnosed with LEs showed reduced frequency/minute in production of resonant utterances and consonants (including [s, z]), used fewer different consonants/minute, and used fewer syllable shapes/minute compared to typically developing infants/toddlers. At 7–12 months, none of the infants/toddlers later diagnosed with LEs, but all participants in the comparison group had reached the canonical babbling stage.

Conclusion: Children who have LEs may have had a less robust speech sound system as infants/toddlers than their typically developing peers. However, these findings must be considered with caution due to the significant limitations of this investigation.     

Is meconium screening appropriate for universal use? Science and ethics say no.

Researchers have been actively looking to biomarker development as a way to improve diagnosis in conditions such as fetal alcohol syndrome (FAS) that have typically been difficult to identify at an early stage. Meconium testing is considered a potentially useful newborn screening method. Screening for alcohol (and other drug) use is unique from all other types of newborn screening in that there is a greater element of social risk for parents, particularly mothers (public exposure of substance use with potential for child welfare involvement). There are many factors related to the science and ethics of the meconium screening process to consider before implementing universal or targeted screening. As care providers who participate in the screening and counseling process and as advocates for infants and their families, neonatal nurses should be active participants in discussions surrounding the ethical and clinical appropriateness of meconium screening program development and expansion. The science behind meconium screening at present is not strong enough to warrant widespread implementation of screening; neonatal nurses are cautioned to approach screening carefully because of the critical social implications for mother and baby.