Homeward Bound: A Case Series of Cross-Cultural Care at End of Life, Enhanced by Pediatric Palliative Transport.

For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.

Children with Short Stature and Growth Failure: Heightism, Gender and Racial Disparities.

Growth is the single most important indication of the health of a child. Identification of growth disorders in all children is crucial as growth failure can be the first sign of a number of acute and chronic conditions. However, gender and racial biases have resulted in inequities in the identification, referral and treatment of children with growth disorders. In addition, short children have been impacted by a number of psychosocial issues. Heightism is prejudice or discrimination against individuals based on height, and refers to discrimination against individuals whose height is not within the normal acceptable range. Studies have shown that short children have been affected by juvenilization, teasing, bullying, victimization, loss of independence/ overprotection, and exclusion. The role of the advanced practice nurse is critical in addressing heightism and racial and gender disparities in children with growth failure/short stature.

Growth failure and hormone therapy.

One of the causes of growth failure is growth hormone deficiency. The outcome of growth hormone therapy to treat this depends on a number of multifaceted issues, including the child, the family and the choice of medication device. Providing support and promoting adherence--key nurse roles--are essential for success

A strong relationship for a long journey.

Growth hormone treatment can take several years, which requires a high level of commitment from patients and families. Endocrine nurses need to build strong relationships with patients and their carers in order to prepare them and provide tailored, honest support

Initiating growth hormone therapy for children and adolescents.

It is common for children and adolescents on growth hormone (GH) treatment to miss one or more injections per week, thereby compromising their linear growth outcome. Among factors likely to affect treatment concordance are patient education and support in the selection of the most appropriate GH injection device. The authors discovered inconsistencies in the process of starting patients on GH therapy throughout the UK, and found that there were no clinical recommendations to support health professionals starting patients on treatment. This article describes the issues involved and the development of practical recommendations for use when starting paediatric patients on long-term GH therapy.

Effectiveness of a multidisciplinary clinic in managing children with chronic kidney disease.

BACKGROUND AND OBJECTIVES: Long-term outcome of patients with chronic kidney disease (CKD) correlates with adequacy of predialysis care. This is best provided in a multidisciplinary clinic that integrates the services of a nephrologist with other staff. There is limited data about such clinics in children. The Children's Hospital of Michigan established a Chronic Renal Insufficiency (CRI) clinic in 2002 to provide comprehensive care to children with CKD. These children receive care from a nephrologist, nurse clinician, transplant coordinator, dietician, social worker, and psychologist. The objective of the study was to compare outcome variables between patients from the CRI clinic and a general nephrology clinic. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: This was a retrospective chart review of 44 patients with CKD stages 2 to 4, who were managed in the general nephrology clinic (1996-2001, n = 20) or the CRI clinic (2002-2007, n = 24) for 1 yr before starting renal replacement therapy (RRT). Laboratory parameters, growth, and dialysis access type at time of RRT were compared between the two cohorts. RESULTS: At RRT, patients from the CRI clinic had better hemoglobin, lower parathyroid hormone and calcium phosphorus product than patients followed in the general nephrology clinic. More patients from the general nephrology clinic had an unplanned initiation of dialysis compared with patients from the CRI clinic (50% versus 10.5%, P < 0.05). CONCLUSIONS: This indicates that children followed in a multidisciplinary clinic have better outcome variables and are more likely to achieve K/DOQI targets at initiation of dialysis. They are better prepared for dialysis with electively planned catheter insertion or functioning arteriovenous grafts/fistulae.

Extrauterine growth restriction: a continuing problem in the NICU.

Extrauterine growth restriction (EGR) is an identifiable marker of severe nutritional deficit during the first weeks of life. Infants with EGR have growth values at or below the 10th percentile of intrauterine growth expectation based on estimated gestational age. Although all preterm sick infants are at risk for EGR, risk is greatest for those infants <1500 g at birth. As estimated gestational age and birthweight decrease, the incidence of extrauterine growth restriction increases. The duration of initial weight loss also increases as birthweight decreases, compounding the difficulty of attaining appropriate growth. To decrease the incidence and consequences of nutritional deficit, NICU caregivers should learn more about EGR, implement assessment protocols to identify EGR, seek opportunities to decrease energy needs of at-risk infants, and work toward enhancing nutritional status of VLBW infants through innovative nutritional management.

School nurses' experiences, concerns, and knowledge of growth disorders in children: development of a monograph.

Growth disorders may be associated with difficult psychosocial adjustment, learning problems, and specific health risks. Appropriate school health programming relies on school nurses who are skilled in growth assessment, management of psychosocial and behavioral problems, and effective communication with school personnel, children, families, and health care resources. A monograph and model individualized healthcare plans were developed for growth disorders in school-age children as an educational resource for school nurses. Knowledge of growth disorders among nurses receiving the monograph was evaluated in a random sample of 336 school nurses, members of the National Association of School Nurses. Knowledge of growth assessment and individualized health care plans for children with specific growth disorders was significantly higher in the group of school nurses who received the monograph. Specific obstacles to implementing school-based health care for children with growth disorders are discussed.

Continuous insulin infusion: promoting growth in low birth weight infants.

Development of improved technologies in neonatal care has yielded increasing numbers of surviving low birth weight (LBW) infants who have challenged methods of supportive care. As researchers and practitioners have focused on respiratory, cardiac, and other body system requirements, nutritional support has been low on the priority list. Support for growth and maximized neurologic development, rather than simply for survival, has been the challenge in care of small and sick newborns. Use of insulin to enhance glucose tolerance in LBW infants, and thereby maximize growth, is a management modality that can be initiated early in the infant's course and is facilitated by implementation of clear and consistent policies and procedures. Continuous insulin infusions have been demonstrated to enhance glucose uptake and utilization--facilitating neonatal growth and in turn enhancing brain growth and developmental outcome.

Morbidity and mortality patterns, health beliefs, and health risk factors of Karen highlanders of northwest Thailand.

Morbidity and mortality patterns, health care practices, and health care beliefs were assessed over three seasons in Pwo and Sgaw Karen preschool children living in the highlands of northwest Thailand. The sample consisted of all preschool children from 77 Pwo and 71 Sgaw households. Although the Pwo and Sgaw Karen residing in the highlands of northwest Thailand live in isolated villages in the same ecozone, utilize similar technologies, have similar access to health facilities, and maintain a certain level of sociocultural homogeneity through their identification as Karen, Pwo preschool children exhibit significantly higher levels of morbidity and mortality than their Sgaw counterparts. It is argued that these differences in morbidity and mortality are primarily the function of historical patterns which resulted in an earlier contact of the Sgaw with modem societies and particularly with an earlier exposure to western health care.

Growth hormone therapy and children with idiopathic short stature: a viable option?

Since the production of biosynthetic growth hormone (GH) began in 1985, there has been growing controversy over appropriate usage for short stature alone. Despite clinical trials for nearly 2 decades, knowledge about the efficacy, safety, and long-term results of GH for this population remains limited. So far, studies of children without growth hormone deficiency (GHD) have found an initial acceleration in growth, but no increase in adult height above pretreatment target height percentiles. Additionally, recent studies have been unable to link normal short stature with adverse psychological effects, while use of GH therapy has been associated with an exacerbation of problems. Thus, there is evidence that GH therapy does not provide the means to overcome either the physical or psychosocial dilemmas of short stature. Health care providers need to recognize the complexity of problems surrounding short stature and look to other "solutions."

Nutritional assessment for children who are HIV-infected.

Pathophysiologic, psychosocial, and economic considerations are important in nutritional assessment of infants and children who are HIV-infected. Nutritional assessment guidelines vary based on the child's circumstances. Specific assessment guidelines are proposed for (a) ongoing ambulatory care; (b) when growth decelerates or its below the fifth percentile; (c) acute illness; and (d) home and community care. The guidelines are based on data collected from a sample of 16 children who were HIV-infected and their families during a pilot study of transitional nursing care using advanced practice nurses. The guidelines were inductively derived from patient care records and from a review of the literature.

Pediatric growth hormone deficiency.

Current information on the pathophysiology, diagnostic process, and treatment of growth hormone deficiency is provided. A case study is provided that shows the positive effects of growth hormone therapy on a patient and his family. Information regarding the intravenous clinician's role in administration of growth hormone and patient teaching also is included.