Men and the Health Care System

"I salute the fathers of special needs children. Those whose children have problems must continue to love, nurture, educate, protect and shield family from a non-empathetic world. May God keep you strong in the knowledge that one strong person can be a majority."






  Men and the Health Care Delivery System
Robert Smithson

The following article was written by the stepfather of a child with HIV. It is a call to service providers to include men in the daily care of children with special needs. The author, an active member of the National Fathers Network, and countless men like him, desire to be fully engaged in the health care decisions affecting their children.

My story starts on February 4, 1990 -- my birthday. After enjoying a chorus of Happy Birthday, the telephone rings. Leslie’s (my wife) daughter Alexandra is on the line. She has not spoken to her mother in six years, is living in California, and is in ill health. She has AIDS. She also has a three year old daughter who is HIV positive. As a concerned mother, Leslie makes plans to go to California to bring Alexandra home. We had been a new family for two years at that point, and I am happy that she will be reunited with her daughter but saddened at the prospect of a short future with her. Life was to become more complicated and there were new challenges to be met. At that point I was very uneducated about what AIDS was; we both had fears but the overriding concern was how to be caregivers, how to protect ourselves, and who to tell. Being caregivers was easy, and once we became knowledgeable, protection was not an issue. Who to tell was the most important decision. First we told the family; no one broke ranks. Second, we told our friends, who proved to be just that -- friends.

In the beginning I was not heavily involved with Alexandra’s caregiving; her mother was overzealous in that area, but I knew fatigue would eventually set in and I would be needed to assume these duties. I had not met Alexandra before, and at first it was awkward caring for a terminally ill person. I am very glad we had the time together; I became her father and she my daughter. We had many 2:00 and 3:00 o’clock in the morning talks and found we had a lot in common, including future plans. Alexandra wanted me to become the important man in her daughter Brianna’s life. We have no idea how long her life may be -- no one knows -- but we both wanted it to be a quality life. As Alexandra became sicker I grew close to Brianna, a cute bubbly quick-to-smile little girl who is now in possession of my heart.

I became more involved with her care and treatment, which brings me to the reason for this article. How does a man with an HIV child view the health care system? I consider myself an intelligent, reasonable person, a rational person, a polite person. None of these qualities helped much in my initial dealings with the health care system. Initially I was treated like a bystander, the man who drove the family to the clinic. Once when I asked a question the answer was given to Leslie. I felt like the invisible man but worse because I was not invisible but ignored. Angered, I attacked with a plan of knowledge. I decided that any question I asked would be so technical in nature, so perplexing, research would be necessary before a response could be given. This was not the real answer, which actually was time. By repeatedly bringing my daughter to her clinic I was taken seriously, questions were directed to me, and my responses were recorded in her medical files.

Today I still take Brianna to her clinic appointments, and there is a very friendly and congenial banter between myself and the provider team. As of her last visit, she had gained 2 pounds and her T4 [blood cells] count had risen. Except for HIV, she is a healthy child which is what all parties -- caregivers and care providers -- have as their primary goal.

We can’t alienate men from being active participants in the health care system. A conscious effort must be made so they will feel comfortable at every stage and every level so health and family systems will function optimally. We must investigate if there is a male who wants to be involved, even if he is not normally present; an invitation to participate may be all that is necessary. The more family involved the better the chance for success.

Robert Smithson

Philadelphia, PA

This article was originally published in the Family-Centered Care Network, Association for the Care of Children’s Health, Volume 10, Number 4. Family names have been changed for reasons of confidentiality. Reprint only with the permission of the National Fathers Network. Contact James May, Project Director, 425-747-4004, ext. 218.

Thoughts from a Stepfather
by Robert Smithson

Hello fathers. I am the stepfather of an AIDS infected child. She is one of the brightest lights in my life. With the exception of medication and occasional blood transfusion, she is as gregarious as any five year old you would ever meet. Being naturally biased, I think she is the cutest kid on the block. She has just started kindergarten and likes it but not as much as she enjoys the after school program where she can swim, play and watch movies. She is well liked by children in the neighborhood and accepted as one of the peer group there.

All of this obviously warms my heart, but my mind is constantly aware of the problems that will occur with the downside of AIDS. No one in her school or daycare knows of her condition, and I wonder if everyone would think she is so cute if they were aware she is HIV infected. She does not know either, and it breaks my heart that some day I may be the bearer of foreboding tidings.

Only a few people in the neighborhood know of the "secret." They are not prejudiced and are generally outgoing towards her. This disease, being visually undetectable, makes families build invisible walls to protect themselves from harassment and possible rejections. She is a special needs child with a need, as many others, for a cure. When we lose the young, we do lose a part of our essence and soul.

I find myself examining every potential social and education encounter of her with a mind’s eye that I feel is too judgmental. I love her but that is not enough for the world in which we live.

I salute the fathers of special needs children. Those whose children have problems must continue to love, nurture, educate, protect and shield family from a non-empathetic world. May God keep you strong in the knowledge that one strong person can be a majority.

This article was originally published in the National Fathers Network Newsletter, and the Association for the Care of Children’s Health, Volume 2:2. Family names have been changed for reasons of confidentiality. Reprint only with the permission of the National Fathers Network. Contact James May, Project Director, 425-747-4004, ext. 218.