It’s About my Child…..

by Joanna Smith on Jul 27, 2010

Healthcare Advocates work with people of all ages.  While Healthcare Liaison does work with seniors, we also provide services to infants and children and their families, young adults, and middle-aged adults:  everyone needs help with healthcare!   It’s not just about insurance, although that is confusing enough in itself:  it’s about the complex decisions that arise in medical care.

An example happened a few months ago when a parent of a six month old called me.  The labor and delivery had been difficult, and the baby was born with serious birth defects.  It is the most anguishing outcome for any parent:  the healthy baby they expected was not the baby who was born.  Instead they have a child who will need lifelong care and has an uncertain future.  How can I help this family?

Working with infants and children and their families presents unique challenges. Families are grappling with guilt and fear that come with having a child with complex medical problems.  Parents do not expect to have a seriously ill child.  There are sometimes difficult decision to make about what is the best care and where can it be obtained–and who will pay for it.

With the family mentioned above, I identified several problems:

*  the parents felt responsible for their child’s condition (“If only we’d done something different  during the pregnancy, this wouldn’t have happened”)

*  the medical team met frequently with the family, but was not repeating the information enough times for the parents to “get” it.  (Health educators say people generally need to hear information a minimum of three times on three separate occasions to be able to incorporate it and use it in a productive way).

*  the medical decisions the family needed to make were complex:  did they want their baby revived if he stopped breathing?  What about using a machine to help him breath?

*  the parents weren’t utilizing all of their support systems to assist them with decision-making

*  the other children in the family were bewildered by the events

What I did to help:

*  talked with the medical team to let them know the parents confusion and encouraged individual members of the team to talk with the parents rather than the whole group at once.

*  Helped the parents identify family and friends that could be supportive in helping them make medical decisions; contacted the pastor at their church so he could provide support

*  Sat down with the family to explain in simple terms what the medical team was saying, translating medical language into sentences they could easily understand.  Answered the other children’s questions with answers they could understand

*  Walked them through the decision-making process for the medical issues they needed to reach consensus on

*  Met with the parents and the medical team to assist the baby’s parents in expressing their wishes

I think one of the most important things that I did for this family was to sit and listen as they talked.  I could be a sounding board and a third party to help them talk with each other and reach a decision that grew from an understanding of their choices.