The death of a child is very difficult and very often life-changing. I’ve had the opportunity to teach at the “Why Doesn’t Your Child Dies” panel discussions hosted by The Huffington Post and Life Extension Magazine. The speakers included family, friends, clergy, psychologists and others on the front lines of caring for a child with a serious chronic illness.
In my experience, families and children are one of the most difficult parts of the journey to death. I feel that this is especially true for children who are experiencing the disease known as AIDS. These children’s lives are at the height of excitement and excitement. They have endless possibilities of fun and happiness that no one can imagine.
The children are able to have unlimited and unfettered opportunities that most parents can’t grasp. These children also have many more needs than they are given credit for. These needs include physical, emotional, and spiritual nourishment which is often the most difficult part for parents to provide.
In addition, the children have all kinds of questions and concerns, many of which do not get answered until the child dies. The questions can range from the most basic of matters — like the importance of sleeping during the night or whether they will ever have privacy or a bedroom of their own — to the most complex of questions — such as how the illness can affect their ability to play or read. These child-centered concerns are particularly hard to address.
One of the biggest difficulties parents have is how to properly respond when children are diagnosed with a particular illness. There is tremendous confusion about what the disease actually is and what the treatment plans will actually be. Many doctors and families have a hard time finding the right answers.
One of the best resources for families is The Life Extension Foundation .
The LIFEF website has a list of child-specific questions which parents should ask, and there is an extensive list of available children’s books.
Parents and family can also find support on the Lifeforum message board.
The American Association of Suicidology maintains a list of resources for family members dealing with an adult at the end of life.
The AIDS Service Committee is a private foundation which provides resources in the area of patient-clinician relationships and support for those living with AIDS.
Other resources include:
Children’s Foundation of America
Adolescent AIDS Program
American Association of Colleges for Positive Youth
Child Advocate Services
Center for HIV/AIDS in the Elderly (Cheva)
Center for Adolescent and Young Adult HIV/AIDS
ClinicalTrials.gov – an organization which tracks new research and new medications
Family-Centered AIDS Study
Global AIDS Education and Prevention Program
Global Alliance for HIV/AIDS Children and Families
Global Health Corps – a program that goes out into the field and helps educate people about HIV/AIDS
Life is Good Network
LifeLine – a telephone counseling service for families dealing with a child with a serious chronic illness
National AIDS Hotline – a 24 hour telephone service that can connect a caller with a trained service provider from a local community-based organization or a non-profit organization to provide help, information and referrals for anyone in need.
NICP-USA – The National Invasive Cytomegalovirus (NCMV) Program of the National Institute of Allergy and Infectious Diseases, funded by the Department of Health and Human Services, helps researchers study and understand a virus which occurs naturally in our bodies. This program is focused on the prevention of human immunodeficiency virus (HIV).
Preventing a child with HIV from becoming infected is one of the oldest forms of preventative health care. In the early 1990’s, when I was working at the University of Illinois at Chicago Medical Center, there was an epidemic of children being diagnosed with HIV who had not developed AIDS. This has not been a problem for the past 15 years.
The Centers for Disease Control and Prevention (CDC) has provided a list of online resources for parents which offer information on preventing HIV for children:
CDC AIDS Online
Preventing AIDS and STDs in Children
The following websites contain helpful information on treating and managing adult patients with AIDS:
Alliance for Care Online
AIDS Treatment in Children
AIDS Treatment in Children (3 CD-ROMs)
AIDS Treatments: A Patient-Centered Approach for Children with AIDS. This program was developed by the Centers for Disease Control and Prevention and the American Academy of Pediatrics. The program is now being developed to include a webinar course for professionals.
National Alliance for Child Health and Human Development – an organization which promotes and disseminates information on AIDS related topics in the child health field.