I am looking for information, to give to a client. The client is about to tell her 13-year-old son that she has AIDS and Boston Children's Hospital has no reference tools for that age category. Can you help?
-- Nurse from Salem, Massachusetts, USA
There was a book published in 1992 by the Association for the Care of Children's Health written by Mary Tasker called "How Can I Tell You?" that may be helpful for this client. There is also a reference list in the back of this book that may also be helpful. The references mention many of the books that other providers use. Good luck!
I wonder if you could answer a few questions for me. What issues do caregivers face when dealing with pediatric AIDS? Do you think it is different than adults that are HIV positive due to the age and maturity level? What are your primary concerns with these children? How do you possibly remain detached from these situations and remain focused on what needs to be done? Is this personally rewarding to you? Is there anything that I personally could do in my town as far as volunteer work to help in any way???
-- College Student, Swansea, MA USA
Dear college student:
These are good questions, probably more deserving of a book or dissertation or at least a term paper response rather than a few paragraphs. But within the reasonable limits of time and space I'll try to answer.
The most important thing to know about children with HIV/AIDS is that they are just regular kids who happen to have this disease. They have all the feelings, hopes, wishes and needs that every other child has. Like every other child they need to feel loved, they need opportunities to play and learn, they need adult guidance, and they dream about what they want to be when they grow up. They are like other children with chronic diseases who want to live as normal a life as possible. They need to go to school, eat regular meals, get adequate rest and know that someone cares enough to make sure those things happen.
The work can be very rewarding personally -- whether from the standpoint of a doctor, social worker, nurse, receptionist or even a grant writer who tries to get funding for better programs for HIV-affected children. It's kind of a unique opportunity to intervene positively in the life of a child and a family. Most practitioners do not remain detached from the kids or their situations. Rather they strive for a caring relationship that balances the child's medical needs with quality of life concerns. Children, like most of us, respond better and adhere better to difficult medication regimens if they sense the concern and affection of those prescribing or initiating the treatments.
Most pediatric HIV/AIDS patients acquired their disease at birth. Therefore they have always lived with the illness and its demands on their bodies and on their daily lives. Also, most have a mother who has the disease or who has died from it. These two factors alone make it quite different from adult HIV. Social workers, psychologists and child life staff work at supporting children's emotional needs in the face of this disease. Disclosure of the diagnosis to the child is a process that changes with the maturity level and age of the child. Because the disease has been very stigmatized and because of its implications about family problems, the disclosure process has been a complex issue in many families.
Our primary concern for children infected with HIV/AIDS is to keep them healthy enough long enough for them to benefit from emerging treatments. The life-span of children with HIV is improving dramatically. Alongside of that, the quality of their lives (i.e. their ability to participate in normal family life with fewer and less severe symptoms) is also improving. They are spending less time in the hospital and more time at school and at home. Treatment adherence is key in this but it does not occur in isolation. The pharmaceutical industry is working on creating treatment regimens that are easier for everyone to live with. Clinic and hospital staffs are working in partnership with caregivers to improve adherence. And HIV-infected kids, as they mature and move forward with life-cycle tasks, are developing more motivation to stay healthy, attend college or other training and plan for a meaningful future for themselves. While some babies and younger children still succumb to the disease, more and more children are growing up and moving toward adulthood.
There are many different ways you could help depending on your interests and motivation. HIV is everywhere, not just in the big cities. You can organize a group of family and/or friends to do fund raising for a local pediatric HIV program. You could learn more about HIV and its transmission and volunteer to educate teens through school or church or other community organizations. You can write letters to the local newspaper in support of needle exchange programs so that fewer mothers will pass the disease on to their children. You can remind your friends that they need to protect themselves from the risk of HIV infection. Our stereotypes of who has the disease and who doesn't will not protect us. You can petition your local school board to update their health curriculum to include current information about HIV and how to stop its transmission. You can simply talk among your own family, colleagues, acquaintances about HIV and begin changing others' perspectives about who gets HIV and why. The fact is that we are all at risk, we all have someone in our own community who is personally affected by HIV, and we all have some responsibility to help one another fight this epidemic. The fact that you are browsing this web site shows that you are interested and that you care. Spread the word: HIV affects all of us and we can talk together to figure out ways of fighting the disease while supporting those who are infected.
I am doing a research paper on children with HIV. I am trying to find out what is required of the parents. Legally do they have to notify the school that the child is enrolled in? I also want to know if they do have to notify the school about the child's HIV status, who has access to that information. Will all school staff have it, or only staff that is contact with the student?
-- Student from Richmond, Virginia USA
There are only 2 states that require disclosure of a child's HIV diagnosis to "schools" -- South Carolina and Illinois. In both these states, it is the responsibility of the healthcare provider of the child -- or the Health Department to notify the school district or Superintendent. The school that the child is attending is not notified directly.
The family is not required to disclose to schools. Standards for policies have been written by the National Association of State Boards of Education (703) 684-400, email@example.com. They published a booklet that I strongly recommend called "Someone at school has AIDS: A Complete guide to education policies concerning HIV infection." Also, search for Journal of School Health Jan 1994 issue vol. 64 on "Best Practices Guidelines."
If the family decides to disclose to their child's school, we recommend that they do this carefully and plan who and how they will tell. Often, there is a need for the school nurse to know because of the child's health requirements, special needs during the school day -- such as medications, susceptibility to chicken pox, or arrangements for classes on one level etc. The school nurse, if there is one, is responsible for the child's individual health/education plan. The nurse is often the best one to disclose to because she or he has an understanding of the ethics of confidentiality. We also encourage families to discuss with the nurse, who else they should disclose to, such as the principal, or the child's teacher.
I have to tell you that most families are very reluctant to disclose to schools because they are very afraid of the possibility that their child will be badly treated, and this is very real -- it is amazing how much fear and lack of information still exists about HIV disease. Families often will not tell until the child has obvious signs of illness or needs special treatments at school.
Schools need to be following "Universal Precautions" for blood and body fluids for all children and staff. This is the single most important practice that will help to protect all children and school personnel from infectious diseases that are blood-born such as hepatitis B and HIV. Knowing a child or adult's HIV status does not protect anyone from infection.
Good luck with your project.