A prospective study of the impact of home monitoring on the family

Fourteen families whose infants required home monitoring for apnea were followed for approximately 5 years from the initial contact (1977). Each family received at least three psychiatric interviews and two follow-up contacts. Effects on the monitored infant, siblings, and parents were examined in open and semi-structured interviews. At first follow-up (mean of 21 months after monitoring discontinuance), seven of 14 monitored children were characterized as spoiled by parents. By the second follow-up, 2 1/2 years later, nine children showed speech, learning, and motor problems; five of these nine children had required resuscitation during their initial episode. Apnea severity was also related to both duration of monitoring and number of additional psychiatric interviews requested by parents or staff. Of 16 older siblings, 12 had psychological problems reported by their parents at first follow-up; these problems appeared to be largely resolved by the second follow-up, although three children were still having problems that caused parental concern. Monitoring, as well as the apnea itself, caused substantial distress manifested in depression, fatigue, and anxiety in many parents, particularly mothers. However, despite their considerable distress, none of the families discontinued monitoring prematurely. Results of the study indicated that the monitoring experience can be divided into four phases: doubt/acceptance, dependence/frustration, discontinuance, and late effects, with substantial differences in parents' responses occurring only in the last two phases.     

Care of infants with near-miss sudden infant death syndrome

The purpose of this study was to evaluate the effectiveness of home management of life-threatening apnea in infants with near-miss sudden infant death syndrome (SIDS). A total of 84 infants were monitored with apnea monitors for an average of seven months (range 1 to 27). A group of 27 infants had episodes of apnea requiring resuscitation during home monitoring, all of whom were successfully resuscitated by their parents on at least one occasion using bag and mask resuscitation, and 17 infants required more than one resuscitation. Subsequent resuscitation was unsuccessful with four infants. Infants who experienced more than ten episodes of prolonged sleep apnea (apnea longer than 20 seconds) during home monitoring had a significantly increased risk of requiring resuscitation than other infants being studied. With the use of home monitoring of these infants and parents trained in cardiopulmonary resuscitation, the survival rate was 93.4%.     

Psychosocial impact of emergency apnea

The pathophysiology of "near miss" or "aborted" sudden infant death syndrome (better termed "emergency apnea") is unclear. Emotionally, however, such episodes are significantly stressful for parents. We administered a questionnaire to 50 families who had experienced emergency apnea at home. Sixty percent ranked the experience as one of the most difficult in their lives; 56% believed that the infant's death was averted only because they intervened. The psychodynamics are similar to those seen in families who have lost an infant to sudden infant death syndrome, and they are consistent with post-traumatic stress disorder. The affected infants may be regarded as "vulnerable children." Many parents believed that their lives were permanently changed. Home apnea monitoring equipment and support from the family physician and monitoring program are important in reducing the stress associated with apneic emergencies.     

Familial occurrence of sudden infant death syndrome and apnea of infancy

We sought to determine the outcome of infants born to families with multiple victims of sudden infant death syndrome (SIDS) and/or apnea of infancy. Seventy-three infants, born to families who had two or more previous siblings who had either died of SIDS or who were monitored at home for apnea of infancy or for abnormal results on polysomnogram and/or pneumogram recording, were prospectively monitored. The infants underwent polysomnogram and pneumogram recordings and were subsequently monitored at home with a cardiorespiratory monitor. All episodes of apnea were immediately reviewed. Thirteen infants (18%) had subsequent severe episodes of apnea and five other infants (7%) died during a subsequent episode. All deaths occurred in families who had two or more SIDS victims. The outcome for the 17 infants who were half siblings was similar to the outcome for full siblings. Clinical data of the infants and results of evaluation were not predictive of outcome.     

Home monitoring of apnea in children at increased risk for sudden infant death (SIDS)

Since 1981, 96 infants considered at increased risk of SIDS underwent home monitoring for prolonged sleep apnea: 23 infants after a near miss for SIDS event, 28 siblings of a SIDS victim and 45 infants with a variety of perinatal risk factors. For a total of 65 infants the course of home monitor surveillance was completed by September 1984 with a duration ranging from 6 to 15 month: 26% (4/15) of the near miss for SIDS group, 23% (3/13) of the SIDS siblings and 13% (5/37) of the perinatal risk cases developed more than one prolonged apneic episode with additional symptoms requiring vigorous intervention by parents. Two infants of the perinatal risk group became SIDS victims: despite an apnea alarm after 15 seconds the parents were unable to resuscitate their infant in one case, the other died from SIDS about 4 month after monitoring was discontinued because of an uneventful course and normal polygraphic sleep recordings The large number of prolonged apneas requiring intervention and the two SIDS cases (3% of the total study group) indicate a considerably increased risk of prolonged life-threatening sleep apnea and SIDS in the population monitored.     

Munchausen syndrome by proxy and apnea (MBPA). A survey of apnea programs

The authors sent questionnaires to 127 apnea monitoring programs asking whether they had treated patients whose apnea appeared to have been induced by a parent (Munchausen syndrome by proxy-apnea, or MBPA). Fifty-one programs (40%) reported 54 cases of this kind from among their 20,090 monitored patients (0.27%). The authors obtained further information on 32 of these patients, 83% of whom presented with infantile apnea before the third month of life. Although medical problems were documented, including apnea, the clinical condition of these infants was inconsistent with the multiple life-threatening episodes typically reported by parents. Twenty-one of the infants reportedly received cardiopulmonary resuscitation at home, 15 had ambulance calls to the home, and 24 were rehospitalized. Child Protective Service agencies were consulted for 12 patients, 5 of whom were placed in foster homes. Three index infants and five siblings are known to be dead, and one additional infant is severely brain damaged from abuse.     

Screening of subsequent siblings of children who die of sudden infant death syndrome

Since the value of home apnea monitoring for subsequent siblings (subsibs) of an infant who died of sudden infant death syndrome is uncertain, we describe an evaluation and monitoring program for subsibs. Eighty subsibs were screened in hospital at an average age of 4.6 weeks. The most valuable investigations included history, physical examination, blood gas tests, and four days on an apnea monitor in hospital. Sleep recordings added no decision-making data. Only 23 infants met one of the following criteria for home apnea monitoring: (1) sleep apnea for more than 15 s (either on sleep recording or recognized by apnea alarm), (2) more than 4.5 episodes of apnea per hour of sleep, (3) periodic breathing greater than 24% of sleep time, or (4) severe parental anxiety. Twenty-two infants were monitored until they were aged 6 months and had spent two months apnea free. Twelve had apnea at home. All of the infants survived. Excessive periodic breathing alone did not seem to be a valid reason for home monitoring. Our screening program is simple, acceptable to families, and useful to select a smaller number of subsibs for home apnea monitoring.     

Impact of extreme prematurity on families of adolescent children

OBJECTIVES: To compare the impact of burden of illness on families of teenaged children who were extremely low birth weight (ELBW) with that of members of a term control group (C) and to determine whether the attitudes toward active treatment of very immature infants differ between the 2 cohorts. DESIGN: In a cross-sectional survey, parents of 145 (86%) of 169 members of an ELBW cohort and 123 (85%) of 145 members of a control cohort completed a 23-item self-completed questionnaire encompassing occupational, marital, and family-related issues and attitudes toward treatment of infants of borderline viability. RESULTS: Both positive (P =.0003) and negative (P <.005) effects on marriage were higher in parents of the ELBW group; although more parents in the ELBW group felt that their child had brought their families closer together (P =.0001), their child's health had adversely affected their emotional health (P =.02) and that of other children in the family (P =.003). Despite this result, a significant proportion of parents from both cohorts supported saving all infants (ELBW 68%; C 58%) and favored the role of parents in decision making (ELBW 98%; C 97%). CONCLUSIONS: In the long term, it appears that parents of ELBW children have adjusted fairly well to their work and family life. Although some negative effects were identified, there was still considerable support for active treatment of infants of borderline viability.     

Very low birth weight infants-educational outcome at school age from parental questionnaire

Educational outcome of former very low birth weight infants, greater than or equal to 1250 g., were obtained by a questionnaire mailed to the families' last known address. Fifty-seven infants were known to have survived the first year of life and an address was available for 49 families, 51 infants (two sets of twins). Forty families (82%) responded regarding 42 of the 57 infants (74%). Only one child had a major health problem, cerebral palsy and epilepsy. All the children were in school. Thirty-nine (93%) were in a regular class and three (7%) were in special classes. Twenty-six children (67%) in a regular class did not require special educational assistance, 13 (33%) did. Using the Hollingshead Four Factor Index, socioeconomic status affected outcome P = 0.0068 (Fischer's exact test). There were 20 children in Classes I-III, upper socioeconomic and three children Class IV-V, lower socioeconomic, requiring no special education and six children in Class I-III and eight children in Class IV-V requiring special education. The neonatal risk factors birth weight, gestational age, appropriateness of weight for gestation, Apgar score, time to regain birth weight, and time on mechanical ventilation did not affect outcome. The only neonatal risk which was significantly different between the respondents and nonrespondents was birth weight, P less than 0.020 for the children in a regular class without assistance and P less than 0.005 for children in a regular class with assistance. Overall, 40 percent of the children had repeated a grade.(ABSTRACT TRUNCATED AT 250 WORDS)     

Home monitoring for infants at risk of the sudden infant death syndrome

Abstract This study evaluates the effectiveness and social implications of home monitoring of 31 infants at risk of sudden infant death syndrome (SIDS). Thirteen siblings of children dying of SIDS, nine near miss SIDS infants and nine preterm infants with apnoea persisting beyond 40 weeks post conceptual age were monitored from a mean age of 15 days to a mean of 10 months. Chest movement detection monitors were used in 27 and thoracic impedance monitors in four. Genuine apnoeic episodes were reported by 21 families, and 13 infants required resuscitation. Apnoeic episodes occurred in all nine preterm infants but in only five (38%) of the siblings of SIDS (P<0.05). Troublesome false alarms were a major problem occurring with 61% of the infants and were more common with the preterm infants than the siblings of SIDS. All but two couples stated that the monitor decreased anxiety and improved their quality of life. Most parents accepted that the social restrictions imposed by the monitor were part of the caring process but four couples were highly resentful of the changes imposed on their lifestyle.
The monitors used were far from ideal with malfunction occurring in 17, necessitating replacement in six, repair in six and cessation of monitoring in three. The parents became ingenious in modifying the monitors to their own individual requirements
Although none of these 31 'at risk' infants died the study sample was far too small to conclude whether home monitoring prevented any cases of SIDS.     

Parent-dependent barriers to varicella immunization in Israel: the importance of adequate information

AIM: To examine the parent-dependent barriers to varicella immunization in Israel. METHODS: Data were collected by questionnaire from parents of children aged 1 to 18 years who attended an outpatient paediatric centre in five cities in Israel from March to May 2003. RESULTS: A total of 1474 parents completed the questionnaire. A history of chicken pox was reported in 850 children (57.8%), mostly (83%) between ages 1-6 years. Of the 624 children without a history of chicken pox, 213 (34.1%) were immunized against varicella. Immunization rates were significantly lower in families with lower parental education and in patients from cities with a lower socioeconomic ranking (p < 0.05). The main reasons for not being vaccinated (49%) were related to insufficient information about the vaccine itself and the vaccination process. These reasons were more common in families with lower parental education and from cities with lower socioeconomic ranking (p < 0.01). Other reasons included fear of adverse effects (12%) and waning immunity (6%), preference of natural illness over immunization (12%), and financial limitations (5%). CONCLUSIONS: Promoting parental knowledge about the varicella vaccine appears to be a key factor in improving the immunization rate, especially in families of lower education, and from cities with low socioeconomic ranking.     

Sudden infant death syndrome in infants evaluated by apnea programs in California

Home apnea/bradycardia monitoring is frequently used in the management of infants at increased risk for sudden infant death syndrome (SIDS). However, some infants have died despite evaluation by infant apnea programs, and the benefits of home monitoring remain unproven. To determine the SIDS rate and risk factors of infants evaluated by infant apnea programs, 31 apnea programs and ten home monitor vendors in California were surveyed. Eleven (35%) of the apnea programs and four (40%) of the vendors responded. Information was obtained on 26 infants who died. Thirteen (50%) deaths were due to SIDS. Abnormal sleep studies did not predict death. Fifteen infants died despite a recommendation for home monitoring. Seven deaths occurred in association with technical errors or noncompliance with monitoring. Four deaths were due to nonaccidental trauma. The apnea programs evaluated 3,406 infants during a 5-year period; 1,841 had monitoring recommended. Term infants with apnea, subsequent siblings of SIDS victims, and infants evaluated at referral centers were more likely to have monitoring recommended than premature infants with apnea or infants evaluated at nonreferral centers (P less than .0001). Infants who had monitoring recommended were at equal risk of dying of SIDS as those who did not.     

Do apnea monitors decrease emotional distress in parents of infants at high risk for cardiopulmonary arrest?

INTRODUCTION: The immediate post-partum period is stressful for most parents. The need to use a home apnea monitor may tax parental coping skills even further. Therefore, we conducted a study to assess the psychosocial consequences of apnea monitoring on parental emotional distress and family functioning. METHOD: We studied 104 parents of infants at high risk for cardiopulmonary arrest. Fifty-two parents had infants who used home apnea monitors, and 52 parents were age-matched and gender-matched control subjects. Data were collected during the infant's hospitalization, and then at 2 weeks, 3 months, and 6 months after discharge. At 1 year, parents were interviewed about their attitudes toward using the apnea monitor. RESULTS: Both groups experienced elevated levels of emotional distress, but the group with infants who used the monitors had significant increases in depression and hostility immediately following discharge from the hospital compared with baseline, whereas the non-monitored group had a significant increase in hostility at 6 months. At 1-year follow-up, the majority of the parents reported that they used the monitor every night, felt more secure in using it, and judged it helpful. DISCUSSION: The immediate period following hospital discharge of infants who need to use a home apnea monitor is characterized by significant emotional distress for the parents, which resolves over time. Anticipatory education and counseling of parents is recommended.     

Home monitors for infants: use,misuse, and “over-the-counter” use

The prevalence of over-the-counter monitors, was surveyed in infants referred to five Belgian paediatric centres between September 1987 and March 1988 for evaluation of their risk for sudden infant death (SID). Questionnaires were collected from 1625 families. Of the infants, 8.9% were already being monitored at home. For 78.1% of the infants no medical advice had been solicited, and for 21.9%, a paediatrician or a general practitioner had advised home monitoring without previous evaluation. Forty of 824 infants referred with no history of SID, and no history of apparent life-threatening event (ALTE), were monitored (4.8%). Monitoring was started for 3.8% (5 out of 130) of the infants who had lost a cousin or an uncle to SID, and for 22.2% (69 of 310) of the younger siblings of a SID victim. Of the 341 infants who had presented with an ALTE, monitoring was started in 32 (9.4%). The infants were monitored with respiratory monitors only, and in 86% of the monitors, the alarm delay had been regulated unnecessarily low.     

Sudden infant death and home monitors

During a two-year period, ten infants died suddenly and unexpectedly with a home cardiorespiratory monitor available. We investigated the compliance with appropriate monitoring technique as well as the medical and demographic factors associated with these deaths (90% were due to sudden infant death syndrome). At least six and probably eight of these ten families were noncompliant with appropriate monitoring technique. The main comparison group consisted of 211 patients for whom care with home cardiorespiratory monitors was initiated and continued. Bronchopulmonary dysplasia and severe, apparent life-threatening events were significantly increased in the subjects, as were the following characteristics: black race; lack of private medical insurance; unmarried mother; maternal age of less than 25 years; cigarette smoking by mother during pregnancy; and low Apgar scores. These diagnostic and demographic factors may be useful in predicting the infant at highest risk for sudden and unexpected death when a home monitor is prescribed. Noncompliance with proper monitoring technique patients; methods of educating parents of infants at high risk of sudden infant death syndrome with the necessity for compliance need to be developed.     

Respiratory syncytial virus infection in infants admitted to paediatric intensive care units in London,and in their families

We carried out a study in five London paediatric intensive care units (PICUs), with the objectives of describing a cohort of infants with respiratory syncytial virus (RSV) infection, comparing hospital diagnosis with PCR results and investigating the spread of RSV in families. Eligible infants were under 5 months old and admitted betweem November 1998 and October 1999 with respiratory failure, apnoea and/or bradycardia or acute life threatening episodes (ALTE). We diagnosed RSV by PCR analysis of nasopharyngeal aspirate, and in contacts by PCR of pernasal swabs. Of the 137 eligible infants, 66% (91/137) were recruited; of these, 82% (75/91) had RSV, with 47% (35/75) diagnosed by hospital laboratory tests and 93% (70/75) by PCR. The median duration of ventilation was 4.4 days, the length of stay on PICU, 8.6 days, and the length of stay in hospital, 15.9 days. In most families (62%), the parents and siblings developed symptoms of RSV infection at the same time as the infant. When the index infant was a secondary case, primary cases occurred in both older siblings (16 families) and adults (11 families). Silent RSV infection occurred frequently amongst children and adults. RSV is under-diagnosed in PICUs. PCR increases the rate of diagnosis of RSV compared to routine hospital diagnostic methods. Young infants are most often infected at the same time as or before their parents and siblings, indicating that the source may be outside the household; vaccinating family members may not prevent RSV infection in infants.     

Five cases of near-miss sudden infant death syndrome and development of obstructive sleep apnea syndrome

Five full-term infants were referred for "near miss" sudden infant death syndrome events, which occurred between 3 and 12 weeks of age. After a complete pediatric evaluation and 24-hour polygraphic monitoring, each infant was monitored at home with a cardiorespiratory monitor. Each was followed regularly (with repeat polygraphic recordings) up to 4 years of age. All five infants developed heavy snoring at night and symptoms of obstructive sleep apnea syndrome. The diagnosis of obstructive sleep apnea syndrome was confirmed by polygraphic recordings; surgery was recommended. Four of the five children underwent adenoidectomies between 3 and 4 years of age, and this significantly improved their condition. These five cases are the first polygraphically documented histories of the development of obstructive sleep apnea syndrome.     

Bottled, filtered, and tap water use in Latino and non-Latino children

OBJECTIVES: To describe bottled, filtered, and tap water consumption and fluoride use among pediatric patients; to analyze differences between ethnic and socioeconomic groups; and to describe the frequency of physician-parent discussions regarding water consumption. DESIGN: Convenience sample survey. SETTING: An urban public health clinic. PARTICIPANTS: Parents attending a public health clinic. OUTCOME MEASURES: The primary outcome measure was the prevalence of tap, filtered, and bottled water use. The secondary outcome measures were supplemental fluoride use and the percentage of patients reporting discussions of water consumption with their physician. RESULTS: A total of 216 parents (80.5% Latino and 19.5% non-Latino) completed the survey. Of the parents, 30.1% never drank tap water and 41.2% never gave it to their children. Latino parents were less likely than non-Latino parents to drink tap water (odds ratio, 0.26; 95% confidence interval, 0.10-0.67) and less likely to give tap water to their children (odds ratio, 0.32; 95% confidence interval, 0.15-0.70). More Latinos believed that tap water would make them sick (odds ratio, 5.63; 95% confidence interval, 2.17-14.54). Approximately 40% of children who never drank tap water were not receiving fluoride supplements. Of the lowest-income families (相似文献   

Longitudinal growth patterns of Pakistani infants in a clinic based growth promotion program

OBJECTIVE: To describe the operation of growth monitoring and promotion (GMP) clinic and longitudinal growth patterns of children. DESIGN: Prospective observation and intervention. SETTING: Outpatient department of a teaching hospital. METHODS: Less than 6 months old infants were registered at GMP clinic and followed for up to two years of age. Mothers were provided information, education and counselling about healthy growth of their infants. The outcome measure was change in weight after follow-up. RESULTS: We enrolled a cohort of 553 children in the first 6 months of life, of which 318 were males. Mean follow up period was 15.7 (SD+/-6.4) months. At enrollment 207 were underweight [weight-for-age Z score (WAZ<-2], of which 153 were from low-income families. The children from poorer families also gained weight regularly, although it was less than the higher income families. Of 346 infants with normal weight at registration, 305 maintained their weight gain by last follow-up visit. Of 207 underweight infants at enrollment 128 improved their weight gain by the last follow-up visit. Overall 433 infants followed-up at our GMP clinic either maintained or improved their weight gain. CONCLUSIONS: Children at risk of undernutrition should be identified at an early age and through effective interaction between health workers and the family, their growth can be improved. Children of poor families can also benefit from this activity, provided a comprehensive approach is made available.     

Periodic breathing and apnea in preterm infants

The relationship between periodic breathing and idiopathic apnea of prematurity was investigated. We recorded respiratory impedance, heart rate, pulse oximetry and end-tidal CO2 from 68 untreated infants of less than or equal to 34 wk gestation with a diagnosis of idiopathic apnea of prematurity. Mean birth wt was 1476 g (SD 420) and mean gestational age was 29.9 wk (SD 2.6). Apneas of more than 15 s duration that were associated with hypoxemia or bradycardia were identified by semiautomated analysis of computerized records. A total of 1116 significant apneic spells were identified, only one of which occurred during an epoch of periodic breathing, five others occurred within 2 min of the end of an epoch of periodic breathing. Less than 0.6% of significant apneic spells occur within 2 min of periodic breathing. In all of the 12 infants that were monitored starting in the first 12 h of life, significant apneic spells were identified before 36 h of age and no precipitating factors were identified. Periodic breathing did not occur during the first 48 h of life, a finding that supports the concept that the peripheral chemoreceptor is inactive in the first 48 h of life. Periodic breathing in the premature infant is not a precursor to significant apnea.