Disclosing the diagnosis of pediatric HIV infection: mothers' views.

ISSUES AND PURPOSE: The stigma of HIV infection creates barriers to disclosure. The purpose of this study was to identify to whom biological and foster mothers disclose the diagnosis of HIV infection, discuss their rationale, and describe the recipient's reactions. DESIGN AND METHODS: A descriptive, qualitative study included biological (n = 9) and foster (n = 11) mothers of children with HIV infection. RESULTS: Three themes emerged from the data: Telling for support, determining who should know, and telling children. These themes were present for both biological and foster mothers. PRACTICE IMPLICATIONS: It is important for nurses to realize that parental disclosure of the diagnosis of HIV infection is a long-term, age-appropriate process that will take place over many discussions and time, and should have the support of the interdisciplinary team. Additional psychological support also should be available.

Clinical genetics: an overview.

It is imperative that clinicians understand basic human genetic concepts. In this article, the patterns of inheritance for single gene disorders are described and include the traditional Mendelian, nontraditional, and multifactorial patterns. Next, chromosomal and structural abnormalities are described, followed by a description of the current measures by which genes are detected, including gene mapping and polymorphisms, and concluding with cytogenetic, molecular, and biochemical testing.

Symptom description and management in narcolepsy.

Narcolepsy is a neurologic condition that is chronic and lifelong. The study reported describes the experience of living with the most prevalent symptoms of narcolepsy and the management strategies employed for those symptoms by persons with narcolepsy. Descriptions of living with excessive daytime sleepiness, sleep attacks, and cataplexy are given. Nonpharmacologic strategies for symptom management were described by 63.2% of the study participants for cataplexy, 54.5% for sleep attacks, and 35.5% for excessive daytime sleepiness. Specific management and coping strategies are provided.

Family experiences when a child is HIV-positive: reports of natural and foster parents.

The purpose of this exploratory study was to examine issues reported by natural and foster parents when caring for a child 3 years of age or younger with vertically transmitted HIV-disease. Issues common to both groups, and specific to the natural and foster parents were explored. The issues discussed by the natural mothers included guilt, their relationship with their infected child, and the effects of their HIV infection on their family. Issues discussed by foster mothers included their decision to foster a HIV-positive child, characteristics of their HIV- positive foster children, fears of transmission, and the effect of the HIV-positive foster child(ren) on their natural family. Issues common to both sets of mothers include disclosure, support, preparation for the HIV-positive child's death, and life in general. The experiences of these families are important to describe in order for pediatric nurses to give accurate, sensitive, and culturally appropriate care.

The development of an instrument to measure the effects of a parent's chronic illness on parenting tasks.

An instrument was developed to assess the impact of chronic illness on the performance of parenting tasks (e.g., lifting, feeding, transporting, etc.). Little research on the affect of illness in general on the performance of parenting tasks is in the literature. Mothers with narcolepsy (n = 20) were used as the sample for this pilot study along with a comparison of mothers without a chronic illness (n = 20). Mothers were matched by the age and sex of the oldest child. The age groups of childhood and adolescence from the Parenting Tasks Index (PTI) were used in this study. Good reliability and validity were found in the use of this instrument. Over 50% of the mothers with narcolepsy indicated many parenting tasks (e.g., assigning the child chores, disciplining, and performing household chores) that posed moderate to severe difficulty for them. Pediatric nurses will find this instrument useful in planning individualized interventions related to identified difficult parenting tasks and in furthering research in this area.

The nurse whose specialty is developmental disabilities.

Specialization in pediatric nursing continues to expand as nurses meet the needs of children with special health care needs. The nurse whose specialty is developmental disabilities works with a unique population to assist them in both obtaining their maximal level of functioning and health, and obtaining the resources necessary to lead a quality life. This article describes the roles of this nurse.

Foster care of HIV-positive children in the United States.

A national study regarding the foster care of children identified as human immunodeficiency virus-positive (HIV-positive) was conducted in 1991. A survey form was sent to the administrators of the State agency responsible for foster care in each State, the District of Columbia, and U.S. Territories for a total sample size of 55. After followup, all 55 responded for a response rate of 100 percent. The number of children in foster care was ascertained for the current year and cumulatively. In 1991, 1,149 HIV-positive children were reported to be in foster care. Most States (49) had a general foster care policy and 21 had specific policies regarding care of a foster child who is HIV-positive. Measures and criteria used for recruitment were examined. In regard to recruitment policies, only seven States mandated recruitment of families specifically for children with HIV and acquired immunodeficiency syndrome. The major topics covered in training for HIV foster families included confidentiality, behavioral management, working with natural families, emotional factors, separation and loss, and others. Other issues discussed are foster parent training, supplemental services, later adoption possibilities, payments, and the expressed fears and doubts of foster parents caring for HIV-positive children. It is recommended that a national conference address the issues.

Historical look at nursing in the field of mental retardation in the United States.

An account of nursing in the field of mental retardation was examined. Educational preparation, professional identity, workday, and salaries were discussed. The influence of attitudes towards persons with mental retardation on this nursing specialization was emphasized.