Journal of urban health : bulletin of the New York Academy of Medicine
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Randomized Controlled Trial Clinical Trial
A randomized field trial of ACINDES: a child-centered training model for children with chronic illnesses (asthma and epilepsy).
A randomized field trial of a child-centered model of training for self-management of chronic illnesses was conducted of 355 Spanish-speaking school-aged children, between 6 and 15 years old, with moderate to severe asthma and epilepsy, in Buenos Aires, Argentina. The model, based on play techniques, consists of five weekly meetings of 8-10 families, with children's and parents' groups held simultaneously, coordinated by specially trained teachers and outside the hospital environment. Children are trained to assume a leading role in the management of their health; parents learn to be facilitators; and physicians provide guidance, acting as counselors. Group activities include games, drawings, stories, videos, and role-playing. Children and parents were interviewed at home before the program and 6 and 12 months after the program, and medical and school records were monitored for emergency and routine visits, hospitalizations, and school absenteeism. In asthma and epilepsy, children in the experiment showed significant improvements in knowledge, beliefs, attitudes, and behaviors compared to controls (probability of experimental gain over controls = .69 for epilepsy and .56 for asthma, with sigma2 = .007 and .016, respectively). Parent participants in the experiment had improved knowledge of asthma (39% before vs. 58% after) and epilepsy (22% before vs. 56% after), with a probability of gain = .62 (sigma2 = .0026) with respect to the control group. Similar positive outcomes were found in fears of child death (experimental 39% before vs. 4% after for asthma, 69% before vs. 30% after for epilepsy), as well as in disruption of family life and patient-physician relationship, while controls showed no change. Regarding clinical variables, for both asthma and epilepsy, children in the experimental group had significantly fewer crises than the controls after the groups (P = .036 and P = .026). Visits to physicians showed a significant decrease for those with asthma (P = .048), and emergency visits decreased for those with epilepsy (P = .046). An 18-item Children Health Locus of Control Scale (CHLCS) showed a significant increase in internality in experimental group children with asthma and epilepsy (P < .01), while controls did not change or performed worse 12 months after the program. School absenteeism was reduced significantly for those with asthma and epilepsy (for the group with asthma, fall/winter P = .006, and spring P = .029; for the group with epilepsy, P = .011). ⋯ The program was successful in improving the health, activity, and quality of life of children with asthma and epilepsy. The data suggested that an autonomous (Piagetian) model of training is a key to this success, reinforcing children's autonomous decision making.
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There has been a dramatic shift of the human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/AIDS) epidemic into poor, marginalized, and minority communities in the US. At the same time, the availability of new highly active antiretroviral treatments has made it possible for a large number of individuals to live for a much longer time with their disease. A net result is that the US is faced with an increasing number of people who are living with HIV/AIDS and are dependent on publicly supported health care services. ⋯ In addition to supporting traditional hospice care, HRSA's HIV/AIDS Bureau has begun a series of initiatives that apply a broader concept of palliative care to its HIV programs in hospital- and community-based settings. Our interest is not to substitute palliation for access to new HIV therapies, such as highly active antiretroviral treatments, but to ensure that our health delivery systems attend to the alleviation of symptoms and suffering along with the provision of antiretroviral and other necessary treatments. HRSA's HIV/AIDS Bureau is organizing a broader provision of palliative care for its clients and actively contributing to improving care for the disenfranchised internationally.
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Asthma is the most common chronic pediatric disease and exacts a toll on the health-related quality of life of affected children and their primary caregivers. This investigation describes the relationship between the clinical severity of asthma among inner-city children and their quality of life and that of their primary adult caregivers. ⋯ The questionnaires captured baseline quality-of-life information about this urban population and will facilitate longitudinal monitoring. The fact that the quality-of-life scores of children with asthma correlated with those of their adult caregivers, but not with their clinical triage scores, highlights the impact of asthma on families and the importance of having a long-term comprehensive management plan that is not based on exacerbations, but that includes both the children and their primary caregivers.
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The increasing use of highly active antiretroviral therapies (HAARTs) has changed the course of AIDS-related illnesses and enhanced the quality of life of patients infected with human immunodeficiency virus (HIV) and may have changed the causes of deaths in patients with acquired immunodeficiency syndrome (AIDS). ⋯ These findings indicate that HAART affected the causes of deaths in patients with AIDS, with "traditional" opportunistic infections diminishing in importance relative to chronic medical conditions and malignancies.