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At least 433 records · Page 24Linked to original sources
PubMed1999

Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers.

HIV disease in perinatally infected patients is now treated as a chronic illness of childhood. The effective use of highly active anti-retroviral therapy has contributed to the improvements in the prognosis of this illness. As this population matures, the issue of disclosure of diagnosis becomes more significant and part of their comprehensive medical care. The importance of disclosure relates directly to medication adherence, treatment compliance, sexual exploration, fears associated with premature death, and the child's developing autonomy. disclosure of HIV disease to an infected child poses complex issues, such as transmissibility, maternal guilt, more than one family member with the virus, and the potential for social stigma and isolation, among others. A change in perspectives is currently taking place regarding the process of disclosure, whereby it may be approached as a gradual discussion process over the life of the child. A method of gradual and partial disclosure to the child with consistent support by a multi-disciplinary team of providers has been a successful strategy for many children cared for at the New York Hospital-Cornell University Medical Center. Of 73 perinatally HIV-infected children who are 6 years of age or older, 41% have had complete disclosure and another 19% are partially disclosed. Continuous communication and negotiation among the members of the team, which includes the parents and caregivers, are vital to the gradual process leading to complete disclosure.

Child↗
PubMed2003

Perspectives on advance directives in Japanese society: A population-based questionnaire survey.

BACKGROUND: In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. METHOD: A self-administered questionnaire was sent via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. RESULTS: Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. CONCLUSIONS: Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure.

Advance Directives↗
PubMed1986

Assessing depression in community samples of children using self-report inventories: ethical considerations.

Although the methodological problems associated with the use of children's self-report depression inventories have previously been discussed in detail, the ethical problems related to the use of these instruments have been largely ignored. The primary purpose of this survey study was to determine how childhood depression researchers have prepared for and responded to children from community (i.e., nonclinic) samples whose nonanonymous scores on self-report depression inventories have indicated that they might be severely depressed or suicidal. Several recommendations, based upon the results of this survey study, the existing literature relevant to the ethical responsibilities of investigators who conduct research with children, and our own experiences with these instruments and populations, are made to assist researchers in their attempts to use these inventories in an ethical manner.

Adolescent↗