Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review

Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn.     

Drawing Back the Lens on Play: A Frame Analysis of Young Children's Play in Puerto Rico

Research Findings: This study assessed public perceptions of child care and its providers in a Canadian province where government funding for child care includes subsidies and a voluntary accreditation process. In 2007–2008, 1,443 randomly selected adults in Alberta, Canada, completed a telephone survey. Individuals were eligible to participate if they had had interactions with a child younger than 14 years of age in the past 6 months. A total of 52% indicated that the government should cover about half of child care costs, and 72% indicated that child care providers at day care centers should have at least a college diploma. Between 80% and 90% indicated that child care providers were as central to children's development as elementary school teachers. One third of parents sought information on child development from child care providers. These parents were more likely to have children in care for more than 6 hr per week, have children younger than 6 years old, and be unmarried. Practice or Policy: The majority of Alberta adults were in favor of substantial public funding of child care. Adults who interacted with children valued the role of child care providers in supporting children's development, which may be encouraging news for providers. Because parents sought information about child development from child care providers, it is important to ensure that providers have both the training and the content expertise to provide parents with current information that will optimize development and support parents in their role. Policymakers, educators, and program planners may consider this information useful in allocating resources to promote child development.     

The Role of Parent,Provider, and Child Characteristics in Parent–Provider Relationships in Infant and Toddler Classrooms

Research Findings: This study examined how characteristics of parents, providers, and children contribute to the quality of parent–provider relationships in infant and toddler classrooms. Parents (n = 192) and providers (n = 95) from 14 child care centers in a large metropolitan area participated by completing questionnaires about the nature of their relationships and communication, as well as other aspects of the child care experience. Although the study did not examine causal relations between variables, characteristics of parent–provider relationships were correlated with parents’ anxiety about placing their children in care, with providers’ knowledge of child development, and with whether parents and providers had worked together in the past. Parents’ views of their relationships with providers were more positive when they had worked with them before and when they were less anxious about placing their children in care. Providers who had worked with parents before had less favorable views of their relationships when parents were more anxious about placing their children in care; however, this was not the case when providers and parents were in more recent relationships. Providers who had never worked with parents before viewed relationships more positively when they had more knowledge of child development. The opposite was true for providers who had worked with parents before. Providers with more knowledge of child development reported communicating more frequently with parents. Providers reported communicating more frequently with parents of children with easier temperaments. Practice or Policy: Implications for transition practices in early care and education settings, in-service training, and teacher education programs are discussed.     

Professionalism and coordination: allies or enemies?

Professionalism arose concurrently with coordination policies among service providers and between parents and service providers in deaf education practices. The author examines the effects of professionalism on coordination among service providers from different disciplines (deaf education, speech-language pathology, elementary education, secondary education, audiology, otolaryngology, and pediatrics), as well as coordination between parents and these service providers in multidisciplinary, interdisciplinary, and transdisciplinary teams in the light of her own experience as a teacher of children who are deaf and hard of hearing in Cyprus. The author concludes that professionalism and coordination can coexist, and that the key issue in this relationship is the personal attitudes of those involved.     

Childbirth education for parents experiencing pregnancy after perinatal loss

Expectant parents who have experienced previous perinatal loss have special concerns, which can be partially addressed by modifying prepared childbirth education courses. This article presents a review of current literature, highlighting the unique needs of expectant parents who have experienced previous pregnancy loss. Modifications to traditional childbirth education courses are suggested, which include addressing parents' grief, managing anxiety, and facilitating communication with health-care providers and others.     

A twin-study of sleep difficulties in school-aged children

This study examines frequency, overlap, and genetic and environmental influences on sleep difficulties, which are understudied in school-aged children. The Sleep Self Report and the Children's Sleep Habits Questionnaire were completed by 300 twin pairs (aged 8 years) and their parents. Child report suggested more frequent sleep problems than parent report (e.g., regular sleep onset delay was reported by 45% of children and 17% of parents). Associations between most of the sleep difficulties were small but significant (e.g., r(s)=.16 for parent report of bedtime resistance and sleep onset delay). Twin correlations based on parent reports suggest greater genetic influence (M=50%) than those based on child self-report (M=18%). Possible rater effects should be considered when evaluating children's sleep problems.     

When parenting does not ‘come naturally’: providers’ perspectives on parenting education for incarcerated mothers and fathers

Learning to parent sensitively and safely can be challenging for adults with childhood abuse and neglect experiences. Such childhood experiences are prevalent among incarcerated parents whose ability to parent their own children is also limited by separation from them. Several prisons have developed programs to foster pro-social parenting skills among incarcerated mothers and fathers to assist them on release. This paper reports a qualitative research study that explored the factors affecting the delivery and outcomes of parenting programs in correctional facilities in New South Wales Australia from the perspective of individuals involved in developing and implementing the programs. Thematic analysis of 19 interviews identified two main themes: supporting parents’ learning in correctional settings and providers’ learning about parent education in correctional settings. Respondents reported the benefits of providing creative learning opportunities enabling parents to build on their strengths and to develop relationships. These factors contributed to changing prisoners’ attitudes and supporting them to consider alternative parenting approaches. The co-productive approach to parent education supported enhanced parenting knowledge among parents and greater insights among educators. Parenting education can be successfully delivered in correctional settings and can assist incarcerated parents to build on existing knowledge and adapt it to their own needs.     

How do parents acquire information to support their child with a disability and navigate individualised funding schemes?

With the international trend towards individualised funding packages that allocate funds to individuals to spend on disability support needs, the challenge of ensuring parents can readily access useful information to make decisions becomes paramount. The present research used a two stage, mixed method sequential approach (with 291 parents surveyed and 56 parents participating in focus groups) to determine how parents acquire information to enhance their understanding of their child's disability and determine how to use an individualised funding scheme to benefit their child and family. Parents attested to the importance of person‐to‐person communication and valued information that originated from other parents of a child with a disability, and from professionals who knew their child. Parents also spoke about the limitations of the internet, noting that reliance on the internet could cause confusion as the validity of information could not be assured. Early childhood intervention services emerged as a key instrument in developing the capacity of families to make informed choices. Understanding families'’ perspectives on the utility of information sources is critical and timely as policy‐makers and service providers within the disability sector shift practice to meet the rise of individualised funding internationally.     

Mental health care for foster children in California

This paper reports on a study conducted to assess the health care needs of foster children in California. To evaluate foster children's mental health problems and the services provided to meet them, 154 program administrators, social workers, foster parents, and health care providers were interviewed in 14 counties. Foster parents and social workers were interviewed in groups, and foster parents and administrators also completed questionnaires. We found that although all counties care immediately for children who are injured, abused, or ill, only one county performs routine mental health evaluations of all children, and in most counties less than a third of children ever receive such evaluations. Informants identified mental health problems as more severe than medical problems in this population, and they identified four major barriers to access to appropriate therapy. Recommendations are that all children should receive comprehensive mental health evaluations, and procedures for immediate and ongoing care with consistent providers who are sensitive to foster children's needs should be included in case management plans, and covered by improved payment mechanisms. Additionally, communication, coordination and joint planning should be instituted among relevant agencies to address foster children's needs, and increased resources and training should be directed towards social service agencies and foster parents.     

Influences on attitudes toward physical affection between adults and children

Recent publicity about sexual abuse may be creating unwarranted negative attitudes toward normal physical affection. In this study, 301 subjects (parents, nonparents, and early childhood professionals) rated approval of videotaped adult-child interactions. Before viewing the tape, half of the subjects read a statement about sexual abuse and the other half read about the benefits of touch. Within each group, half of the subjects were told that the videotaped adults were parents and the others thought that they were day care providers. Analysis of approval scores for touch and no-touch scenes showed that (a) when subjects are attuned to sexual abuse, they are more disapproving of affectionate touching and more approving of nonphysical interactions; (b) affection is more highly approved when it comes from a parent than from a day care provider; (c) men approve less of adultchild physical affection than women do; and (d) early childhood professionals are more approving of physical affection.     

Special Education in New Zealand: Disability,Politics and Empowerment

RECENT CHANGES in educational administration in New Zealand have been premised on an economic model of schools as providers and parents as consumers. At the same time, laws relating to education have been changed toward establishing the right of all children, irrespective of ability or disability, to education in state schools. Both moves have the potential to empower parents seeking integration into mainstream classrooms for their children who have disabilities. Recognition of the rights of Maori as the indigenous people of New Zealand is a further context within which educational and disability issues can be interpreted in terms of the social, cultural and political beliefs that underlie our concepts and actions.     

The work–family support roles of child care providers across settings

This paper presents a qualitative investigation of the work–family support roles of a sample of 29 child care providers serving low-income families in the Chicago area (16 family, friend, and neighbor providers (FFN), 7 licensed family child care providers (FCC), and 6 center-based teachers). Providers report offering low-income parents substantial logistical (flexible hours, help with routines) and economic help (flexible fees, help with subsidies) managing work and family, in addition to their care of children. For FFN providers, support was often provided in the context of significant stress and burden. FCC providers and center-based teachers were often constrained in their help-giving by ambivalence regarding professional guidelines and institutional constraints. Findings from this study may inform future research on the effects of child care on children and parents, and models of child care quality.     

Nap schedules and sleep practices in infant-toddler groups

This article describes and analyzes sleep-wake schedules and nap times in multiage infant-toddler groups through three case studies based on ethnographic research conducted in two Finnish day care centers. The study asks how day care centers and homes in collaboration can protect children’s biological sleep-wake rhythms and the physiological effectiveness of sleep. Data were derived through participant-observation in the groups, taped interviews with staff and parents, and sleep diaries kept by the parents. Findings show some of the complex interactions among family daily patterns, day care patterns, and sleep disturbances in very young children. The findings further show that major differences exist in day care practices regarding the quality of sleep and its physiological effectiveness. These differences are related to three issues: (1) whether the timing of naps in the multiage group is simultaneous or staggered in an age-appropriate and individually appropriate manner; (2) how efficiently the home/day care personnel communicate with one another; and (3) what is the awareness level of the day care staff about the significance of the sleep environment. The article further discusses the team aspect of protective practices, differences between caregivers and their differences in organizing work, as well as implications for further research and for caregiver training.     

Teaching Chronobiology and Sleep Habits in School and University

ABSTRACT— Early morning school schedules are in the opposite direction to the sleep–wake cycle in adolescence and early adulthood. This conflict leads to sleep deprivation and irregular patterns whose consequences are scarcely explored. This article discusses the effects of three educational experiences with high school students, parents, teachers, and medical students. The first experience was developed with high school students in Natal, Brazil, to determine whether sleep habits would improve with increased awareness. Positive effects were observed in some aspects of sleep knowledge and practices. In the second experience in Atlanta, GA, sleep education activities were presented to middle and high school teachers, parents, and students to emphasize the importance of sleep. In the third program in Murcia, Spain, undergraduate medical students were introduced to chronobiology of sleep by a practical exercise that pointed out to what extent they shared most of adolescent sleep characteristics. Educational chronobiological experiences about sleep are essential to develop healthy sleep habits in the general population, particularly in students.     

Rights,expertise and negotiations in care and education

More young children and their families have access to early years services than ever before in Britain. Within these settings practitioners and parents need to work closely together for the benefit of the child. Yet the relationships within the childcare and education triangle (child, parent, practitioner) are highly complex and sometimes fraught with tension. Drawing on theories of care, the paper offers a structure for decisions about childcare and how a combination of expectations from parents and practitioners regarding everyday care practice can either be the basis of a trusting relationship between the adults involved in this caring triangle or a breeding‐ground for tensions. The study is mainly based on qualitative research from a study combining qualitative and quantitative methods with family day care providers in the north‐east of England and the north‐east of Germany.     

Preparing children for reading

Most practical in a situation where one-to-one relationships thrive, this constructive method of preparing children for reading will be of special interest to family day care providers, caregivers in infant and other centers with low caregiver/child ratios, and parents.Gerard Giordano is Associate Professor of Reading Education and Coordinator of Reading Programs at New Mexico State University's College of Education. He can be reached at the College, Box 3AC, Las Cruces, New Mexico 88003.     

Community Knowledge,Beliefs, Attitudes,and Practices towards Children with Spina Bifida and Hydrocephalus in Uganda

This article describes the findings of a qualitative study on knowledge, beliefs, attitudes, and practices towards children with spina bifida and hydrocephalus in four regions of Uganda. Focus group discussions and semi-structured interviews were held with parents of children with spina bifida and hydrocephalus, policy-makers, and service providers. Our findings describe how negative knowledge, beliefs, attitudes, and practices create barriers to treatment and inclusion of children with spina bifida and hydrocephalus and their parents in Uganda. The findings show how knowledge, beliefs, attitudes, and practices evolve over time, are both similar and differ in the various regions, and become more conducive towards accessing treatment and achieving inclusion. Sensitisation and early intervention including parents and service providers in dissemination of knowledge, rehabilitative care to set the trend for positive change and support, as well as longitudinal studies of children with spina bifida and hydrocephalus and their parents are recommended.