Looking back to see forward: multidirectional learning between the US Ryan White HIV/AIDS Program and the US President's Emergency Plan for AIDS Relief.

To end the HIV epidemic as a public health threat, there is urgent need to increase the frequency, depth and intentionality of bidirectional and mutually beneficial collaboration and coordination between the USA and global HIV/AIDS response. The US Health Resources and Services Administration (HRSA) is uniquely positioned to showcase bidirectional learning between high-income and low-income and middle-income countries (LMICs) in the fight against HIV. For 30 years, HRSA has successfully administered the Ryan White HIV/AIDS Program (RWHAP), the largest federal programme designed specifically for people with HIV in the USA.

Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions.

Context: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care.

Objectives: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life.

Methods: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014.

Strengthening health policy development and management systems in low- and middle- income countries: South Africa's approach.

The development and management of health policies, strategies and guidelines (collectively, policies) in many low- and middle-income countries (LMICs) are often ad hoc and fragmented due to resource constraints a variety of other reasons within ministries of health. The ad hoc nature of these policy processes can undermine the quality of health policy analysis, decision-making and ultimately public health program implementation. To identify potential areas for policy system strengthening, we reviewed the literature to identify potential best practices for ministries and departments of health in LMICs regarding the development and management of health policies.

A novel classification system for research reporting in rare and progressive genetic conditions.

Aim: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting.

Method: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system.

Developing and implementing national health identifiers in resource limited countries: why, what, who, when and how?

Many resource-limited countries are scaling up health services and health-information systems (HISs). The HIV Cascade framework aims to link treatment services and programs to improve outcomes and impact. It has been adapted to HIV prevention services, other infectious and non-communicable diseases, and programs for specific populations.

Charting the territory: Describing the functional abilities of children with progressive neurological conditions.

Aims: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study.

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems.

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions.

Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports.

Declaration on mental health in Africa: moving to implementation.

Urgent action is needed to address mental health issues globally. In Africa, where mental health disorders account for a huge burden of disease and disability, and where in general less than 1% of the already small health budgets are spent on these disorders, the need for action is acute and urgent. Members of the World Health Organization, including African countries, have adopted a Comprehensive Mental Health Action Plan.

Impact of research participation on parents of seriously ill children.

Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions.

Background: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.

Aim: To describe these children's symptoms, as well as how the children's condition affects them physically.

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

Background: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge.

Factors related to changes in cognitive, educational and visual motor integration in children who undergo hematopoietic stem cell transplant.

Objectives: Investigate cognitive, educational, and perceptual motor skills up to 2 years posttransplant of pediatric hematopoietic progenitor cell transplantation (HPCT) survivors and their correlates.

Methods: Survivors were assessed at baseline, 12, and 24 months after transplant.

Results: Performance IQ improved over time and was negatively related to maternal depression.

Epidemiology of health and vulnerability among children orphaned and made vulnerable by HIV/AIDS in sub-Saharan Africa.

The HIV/AIDS epidemic in sub-Saharan Africa has already orphaned a generation of children, and it is projected that by 2010, 18 million African children under the age of 18 are likely to be orphans from this single cause (UNICEF, 2005, The state of the Worlds Children: Childhood under threat. New York: UNICEF). Results from a Kellogg funded OVC project (Skinner et al.

Health-related quality of life of children and adolescents prior to hematopoietic progenitor cell transplantation: diagnosis and age effects.

Background: The health-related quality of life (HRQOL) may vary among children before undergoing hematopoietic progenitor cell transplantation (HPCT). This study examined the HRQOL of children scheduled for HPCT, the effects of diagnosis and age on HRQOL, and the convergent validity of one generic and two disease-specific measures of HRQOL.

Procedure: The sample consisted of 111 children (mean age = 10.

Modified Vogel and Johnson Agar for Staphylococcus aureus.

The formula for a modified Vogel and Johnson Agar is presented. In addition to the ingredients found in Vogel and Johnson Agar, the new medium contains, per liter: 5 g of beef extract, 2 g of deoxyribonucleic acid, 2 g of phosphatidyl choline and 780 units of catalase spread on the plates before inoculation. This new medium is as effective as Baird-Parker Agar in enumeration of stressed Staphylococcus aureus , and in enumeration of staphylococci from naturally contaminated processed food samples.