Chronic Illness and Preterm Infants: Family Stress and Support Issues

As the survival rate for children with complex medical conditions has increased, the body of knowledge regarding childhood chronic illness has grown. While the initial focus of this literature was the effect of the illness on the child, recent studies have focused on chronic illness and broader family issues. The transactional and family systems perspectives suggest the need for longitudinal studies of chronically ill infants from the point of diagnosis. Although a few studies of relatively healthy preterm infants have documented family stress levels, there is a paucity of research on the effects of parenting a very low birthweight infant with complex medical needs. The Chronically Ill Infant Intervention (CIII) Project and its broad based interdisciplinary intervention is used to illustrate the changing needs of this population. Preliminary analyses of specific intervention needs during the infants' first 18 months are discussed in relation to the reduction of family stress.     

Testing a Mediational Model of Communication Among Medical Staff and Families of Cancer Patients

Three structural equation models of communication between family members and medical staff were examined to understand relations among staff accessibility, inhibitory family attitudes, getting communication needs met, perceived stress, and satisfaction with communication. Compared to full and direct models, a mediational model fit best in which the independent variables family attitudinal inhibitions toward communicating with staff and accessibility to medical staff were mediated by getting communication needs met in predicting communication satisfaction and perceived stress. There was 47% explained variance in getting communication needs met, and 41% and 16% explained variance in communication satisfaction and perceived stress, respectively. Those family members who reported greater access to staff and fewer attitudinal inhibitions reported greater levels of getting communication needs met, which in turn, was associated with greater communication satisfaction and less perceived stress. These findings have important implications for health care providers and managed care and mental health professionals regarding family needs and well-being in the context of illness.     

Hospital‐to‐school transition for children with chronic illness: Meeting the new challenges of an evolving health care system

Chronic illness is common and has a profound impact on the education of affected children. A variety of approaches and programs to facilitate the transition from hospital to school for children with chronic health problems has been described in the literature. Traditional transition plans may no longer be effective because medical service delivery has changed to reduce long‐term hospital stays while increasing outpatient care. As a result, comprehensive hospital‐to‐school transitions increasingly emphasize home and family involvement that includes homebound instruction strategies, flexible school days, using differentiated instructional strategies, increasing child autonomy, and addressing affective issues. This article describes the needs of children with chronic illness, identifies educational programming consistent with the current health care system, and describes current hospital‐to‐school transition plans that integrate systemic needs of schools and health care systems with the needs of children with chronic illness. © 2007 Wiley Periodicals, Inc.     

Munchausen syndrome by proxy: A family affair

Munchausen syndrome by proxy is an unusual form of child abuse: a child presents with an illness that has been factitiously produced by a parent, typically the mother. A case of chronic illicit insulin administration to a one-year-old girl is described. Despite temporary separation of the child from the mother and long-term psychiatric intervention, factitious illnesses continued, including urine specimen contamination, laxative-induced diarrhea, suspected bladder catheterization, and suspected poisoning. Retrospective review of the medical records of the mother and two siblings demonstrated previously unrecognized evidence of factitious illnesses. The medical records contained evidence of 30 separate episodes of suspected or documented factitious illness in these four members of the same family. This unique family illustrates the significant morbidity of Munchausen syndrome by proxy and a poor response to psychiatric treatment.     

Education of infants with down syndrome

The early education of infants with Down syndrome has been strongly influenced by studies highlighting the importance of the environment. These studies encouraged the belief that intelligence is not fixed and that early experience is critical to the course of development. Since the origins of a decline in IQ for Down syndrome had been traced to early infancy, it was hoped that early intervention programs might halt or even reverse this decline. The de-institutionalization movement converged with these studies to emphasize the home as a teaching environment and to view the mother as a teacher. It is suggested that the concept of the environment should expand beyond the family and that professionals should consider their own role in terms of the social ecology of the family. The programs need also to address the specific arousal needs of the infant with Down syndrome and to include motivational aspects in addition to cognitive measures when evaluating the effects of infant education.     

Early Predictors of Attachment in Infants with Cleft Lip and/or Palate

Previous studies have found that children with cleft lip and palate (CLP) and isolated cleft palate (CP) have elevated risk for a variety of psychosocial problems, but the origins of such problems are unclear, We excted that early medical and other stressors during infancy—including feeding problems and facial disfigurement—would have adverse effects on the infant, his or her caregivers, and the family environment, leading to a higher than expected rate of insecure attachments among infants with clefts. Twelve-month attachment classifications of CLP, CP, and comparision group infants were examined. No significant group differences in attachment status were found. When 3-month infant, maternal, and social/family characteristics were examined as potential predictors of insecure attachment, predictors interacted with diagnostic status. For the cleft group, infant and maternal characteristics, but not family characteristics, significantly predicted insecure attachment. For the comparison group, maternal and family characteristics, but not factors associated with the infant, were predictive. Infants with clefts despite their special needs and caregiving requirements, seem not to have elevated risk for insecure attachments at the end of their first year. Contrary to social-psychological formulations, the facial appearance of infants with CLP had no adverse effect on the quality of their maternal attachment.     

Early Intervention with Medically Fragile Infants: Investigating the Age-at-Start Question

Very few studies have investigated the age at which early intervention should begin. Similarly few studies have examined the effects of early intervention for infants who are medically fragile. The present study responds to these two critical issues by longitudinally comparing groups of infants who are medically fragile. These infants were randomly assigned to receive developmentally appropriate programs beginning at either 3- or 18-months adjusted age. Analysis of measures of child development and family functioning for the first three annual assessments indicated that the two groups were similar on measures of child functioning at the first and second assessment. However, at the third assessment, children who received the intervention at an earlier age scored significantly higher than did children whose intervention began 15 months later. No significant group differences were found on measures of family functioning at any of the assessments. Implications of these results for future research and practice are discussed.     

Early Intervention with Medically Fragile Infants: Investigating the Age-at-Start Question

Very few studies have investigated the age at which early intervention should begin. Similarly few studies have examined the effects of early intervention for infants who are medically fragile. The present study responds to these two critical issues by longitudinally comparing groups of infants who are medically fragile. These infants were randomly assigned to receive developmentally appropriate programs beginning at either 3- or 18-months adjusted age. Analysis of measures of child development and family functioning for the first three annual assessments indicated that the two groups were similar on measures of child functioning at the first and second assessment. However, at the third assessment, children who received the intervention at an earlier age scored significantly higher than did children whose intervention began 15 months later. No significant group differences were found on measures of family functioning at any of the assessments. Implications of these results for future research and practice are discussed.     

Mothers’ stress,resilience and early intervention

The aim of the study was to examine factors that predict maternal stress, reported by mothers whose infants were diagnosed as having developmental disabilities at the beginning of participating in an early intervention programme ‘Me and My Mommy’ and after one year. A second goal was to identify and to portray a subgroup of resilient mothers. The sample consisted of 70 mothers from intact families, whose infants were diagnosed mostly with Down’s syndrome. All mothers were receiving early intervention services. The mothers were presented questionnaires—Sense of coherence (SOC); Family adaptability and cohesion evaluation (FACES III); Coping scale of parenting stress index (PSI‐SF), at the beginning and at the end of the year. They were also interviewed at the end of the intervention regarding their satisfaction with the programme. The results showed that at the beginning of the year, the mothers’ sense of coherence had predicted the stress experience. After a year of participation in the intervention, in addition to the contributions of the initial stress and the mothers’ satisfaction with the intervention programme, the following variables: the mothers’ sense of coherence, coping style and family cohesion, assessed at the beginning of the intervention, were considered. A group of resilient mothers was identified and they revealed following intervention a higher sense of coherence, lower stress, an increased family cohesion and decreased family adaptation measures. The results have implications for the planning of effective intervention programmes.     

An evaluation of the educational support for teachers who teach children with life-limiting illness in schools

There are increasing numbers of children living with life-limiting illnesses in mainstream schools. The aim of this literature-based study was to evaluate the current provision of educational support for teachers who are teaching these children in schools. An international literature search produced 23 papers published between 2005 and July 2010 that concerned children with life-limiting illness in relation to education in mainstream schools. The analysis identified that the needs of children with life-limiting illnesses are not being well met, and there appears to be little evidence of educational support for teachers. The paper concludes that schools need to work with both the medical and social models of health/disability in order to meet the needs of children with life-limiting illness. There is some consensus that the way forward needs to include multidisciplinary working within an ecological approach that supports home, schools and the health services working together. Only one paper reported an evaluation of such an intervention. There is a need for more research, evaluation and dissemination about the experience of living with a life-limiting illness in mainstream schools and related interventions, and for this to inform professional education and the coordination of education, health and home systems.     

Examining the Structural Relationship of Chronic Illness,Physical Function,Life Satisfaction,and Social Support in the Development of Depression Among Filipino Elderly in Institutionalized Settings

Considering the increasing prevalence of chronic illness in the Filipino elderly, this study seeks to test a model that describes the relationship between chronic illness and depression and how this link might interact with physical functioning, life satisfaction, and social support. Structural equation modeling was used to examine the causalities among these variables. With the participation of 151 respondents, data were gathered using a five-part instrument consisting of the robotfoto, Katz Index of Independence in Activities of Daily Living, Life Satisfaction Checklist, Social Support Scale, and Geriatric Depression Scale. Data were analyzed using AMOS version 19. Results showed that the duration and number of present chronic illness will not lead to an increase in social support, although those things proved to have a negative effect on physical functioning and life satisfaction. Social support from the family also showed to have a direct impact on life satisfaction while social support from the caregivers revealed a negative effect on physical functioning. Life satisfaction had a negative influence on depression while other suggested variables have no impact on depression at all. Through this model examining the variables relating to depression, holistic care must be provided to manage not only the medical conditions of the elderly but also their physical, social, and psychological well-being.     

Early childhood intervention: possibilities and prospects for professionals, families and children

In March 2005, Barry Carpenter, OBE, Chief Executive and Director of Research at Sunfield, an education and residential care centre for children with severe and complex learning needs, gave his inaugural professional lecture at University College Worcester. This article is based on that lecture. In it, Barry Carpenter reviews international trends in early childhood intervention and relates these to changing patterns of childhood disability, family needs, practitioner-led service development and Government policy initiatives. He describes a political climate in the UK which is ripe for the development of a nationally cohesive programme of early childhood intervention and proposes a number of key factors hat are crucial to the consolidation of the plethora of initiatives that have taken place in the UK in recent years. These include: early interventions that are delivered from the point of diagnosis; practice that is transdisciplinary; and high quality training for professionals. At the heart of this process, however, must be the voice of the family - guiding, informing, sharing, engaging. The key to successful early childhood intervention, Barry Carpenter argues, is responsivity - to society, to its families, but most of all to its children.     

The Effect of Early Intervention Services on Maternal Well-Being

In this investigation we examine the relation between intensity, duration, and comprehensiveness of early intervention (EI) services and changes in three aspects of maternal well-being: parenting stress, social support, and family cohesion. Data on the hours, length, and types of services received by a sample of 133 children and families from EI programs in Massachusetts and New Hampshire were gathered from the point of entry into EI to the point of discharge around the child's third birthday. Hierarchical regression analyses were used to determine which measure of EI service intervention contributed significantly to the explained variance in changes in maternal well-being, over and above aspects of the child's functioning and prior levels of maternal well-being. Results indicated that, although greater service intensity was associated with improved family cohesion overall, mothers of children without motor impairment reported greater increases than mothers of children with motor impairment. Service intensity and comprehensiveness predicted significant increases in social support levels. EI services did not have a significant impact on parenting stress. Three practice and policy implications are discussed: building flexibility into EI service provision to be responsive to individual family needs; attending to the accommodations required of families raising a child with a motor impairment; and incorporating other aspects of family functioning into future studies of EI effectiveness.     

Measuring the Quality of Early Intervention Services for Infants and Toddlers: Problems and prospects

Comparable scales to measure quality of early intervention services for infants and toddlers as perceived by parents and service providers were developed based on the Recommended Practices in Early Intervention. Each scale consisted of four subscales focusing on: home-based therapies/instruction, centre-based therapies/instruction, medical/ health services, and service coordination. The scales were administered to 209 parents and 177 of their service providers. A sample of 24 parents completed the instrument twice during a two-week interval to assess test-retest reliability of the parent scale. Test-retest reliability for the parent scale was .785. Validity of the scale was assessed by examining the correlation of parent and provider perceptions of quality with family demographic and early intervention service characteristics. Parents' perceptions of quality were related to family centredness of services. Neither parents' nor providers' perceptions of quality were related to family socioeconomic status. Problems and prospects for measuring quality of early intervention services are discussed.     

Does More Intensive Neonatal Intensive Care Unit Follow-Up Service Result in Better Outcomes? A Cost-Effective Analysis

Little is known about the relative cost-effectiveness of the many different types of early intervention services provided to medically fragile infants and their families. This study compared two intensities of services for such infants and their families: (a) a coordinated and comprehensive system of early intervention services initiated prior to discharge from the NICU and designed to transition infants to community-based services were compared with the effects of services (high intensity); and (b) a more traditional hospital follow-up consisting of medical checkups and referrals following discharge (low intensity). High-intensity services resulted in five times more community-based early intervention hours for families and infants when compared with low-intensity services. Annual costs of the high-intensity group were approximately triple the costs of the low-intensity group ($10,814 versus $3,032 per child per year), but there were only a few statistically significant differences on measures of child and family functioning between the groups at 6-, 12-, 18-, and 24months' corrected age. Implications of these findings for research and practice are given.     

Does More Intensive Neonatal Intensive Care Unit Follow-Up Service Result in Better Outcomes? A Cost-Effective Analysis

Little is known about the relative cost-effectiveness of the many different types of early intervention services provided to medically fragile infants and their families. This study compared two intensities of services for such infants and their families: (a) a coordinated and comprehensive system of early intervention services initiated prior to discharge from the NICU and designed to transition infants to community-based services were compared with the effects of services (high intensity); and (b) a more traditional hospital follow-up consisting of medical checkups and referrals following discharge (low intensity). High-intensity services resulted in five times more community-based early intervention hours for families and infants when compared with low-intensity services. Annual costs of the high-intensity group were approximately triple the costs of the low-intensity group ($10,814 versus $3,032 per child per year), but there were only a few statistically significant differences on measures of child and family functioning between the groups at 6-, 12-, 18-, and 24months' corrected age. Implications of these findings for research and practice are given.     

Intellectual Disability and Developmental Risk: Promoting Intervention to Improve Child and Family Well‐Being

Initial intervention processes for children with intellectual disabilities (IDs) largely focused on direct efforts to impact core cognitive and academic deficits associated with the diagnosis. Recent research on risk processes in families of children with ID, however, has influenced new developmental system approaches to early intervention. Recent risk and resilience processes are reviewed that connect stress, family process, and the high rates of behavioral problems in children with ID that have substantial influence on child and family outcomes. These models are linked to emerging evidence‐based intervention processes that focus on strategic parent skill training and mindfulness interventions that reduce parental stress and create indirect benefits for children's behavioral competencies. A family‐focused developmental systems approach (M. J. Guralnick, 2011) is emphasized.     

Growth and development following prenatal stress exposure in primates: an examination of ontogenetic vulnerability

Previous studies have found that stressful events during pregnancy can influence the developing fetus, resulting in attentional and neuromotor problems. This prospective study examined whether periods of vulnerability exist for neurobehavioral impairments associated with prenatal stress, using a nonhuman primate model. Twenty-eight rhesus monkey infants were born to mothers in 3 groups: (1) early gestation stress involving mild psychological stress from gestational days 45-90, (2) mid-late gestation stress from days 90-145, and (3) undisturbed controls. Infants were separated from their mothers on days 4, 9, 15, and 22 (+/- 1) postpartum for growth and neurobehavioral assessments. Results indicated that infants from the early gestation stress condition weighed less than infants from mothers stressed during mid-late gestation. Moreover, whereas both groups scored lower than controls on measures of attention and neuromotor maturity, early gestation stress was associated with more pronounced and more pervasive motor impairments than mid-late gestation stress. These results suggest sensitivity to prenatal stress effects peaks during early gestation, tapering off during mid-late gestation. Clarifying the period of greatest vulnerability to prenatal stress moves toward elucidating the underlying mechanism for prenatal stress effects and may lead to more successful intervention and/or prevention.     

Educational Needs of School-Aged Children Born Very and Extremely Preterm: A Review

Recent decades have witnessed dramatically improved survival rates for infants born prematurely, especially those born very and extremely preterm. Follow-up studies concerned with long-term neurodevelopmental outcomes for children born preterm indicate that these children are at high risk for a range of cognitive, learning, neuromotor, and behavioral difficulties. However, to date, most of the existing literature has tended to focus on the medical and developmental impact of preterm birth, with little consideration given to the educational implications. Addressing this research gap is important since cognitive and educational difficulties represent the most commonly occurring cluster of adverse outcomes affecting children born very or extremely preterm, with up to two thirds likely to require educational assistance during their school years. The goal of this review is to provide an overview of existing research findings relating to the educational needs of school-age preterm children. Methodological issues that need to be addressed in future outcome research relating to the developmental and educational needs of very preterm children are also highlighted. Finally, implications of existing findings for educational psychologists, counselors, teachers, and teacher educators are discussed in terms of the roles of society, education systems, schools, and teachers.     

New Orleans Early Intervention Study of Children with Visual Impairments

There is widespread agreement that early intervention for children with visual impairments and their families is important and beneficial. However, few con- trolled prospective studies of the effectiveness of various types of early intervention have been completed with these children. This randomized study evaluated the immediate and long-term effects of a comprehensive, weekly homebased intervention for infants and toddlers with visual impairments, compared with a low-intensity treatment through parent group meetings offered approximately 12 times per year. In annual assessments conducted for t h e years after the intervention was begun, there were negligible statistically significant or practical differences between groups based on a variety of measures of child and family functioning. In light of the cost-effectiveness analyses reported, questions are raised about the type of early intervention that should be provided to children with visual impairments.