Thinking of changing

I've done home health care for more than 30 years, and counting. I love it! I'm referring to shift work in the home, usually 8 to 12 hour shifts.

I have two primary goals in pediatric home nursing. The first is to provide home based skilled nursing care of the medically fragile child, keeping him healthy and safe while promoting normal growth and development and keeping family life as normal as possible. The second goal is to help his parents become competent, confident caregivers while allowing them to have times of respite.

Let's break it down; I will keep my patient safe. This includes Normal child” safety issues, issues specific to this child, basic medical problems, and problems that his parents can tell me about.

Keep him healthy. This requires communication with the entire team, including parents, physician, PT, OT, speech therapist, dietitian, teachers, etc, to give skillful care, along with parent teaching as needed.

Promote normal growth and development. We want to prevent further disability and regain lost ground when possible. Make his life happy and interesting. Play with him, doing things that he enjoys. Try to make therapy fun, and give him choices when appropriate. Read to him, talk to him, tell him stories and write down his stories. Include siblings where appropriate.

Help his parents become competent, confident caregivers. Identify their abilities and skills (strong points) and encourage them by pointing these out. Learn from them. Identify deficits in motivation, and try to discover the reason. Work with parents to identify goals & ways to meet those goals. Identify and address knowledge deficits. Ask the parents if they have any questions or problems, observe the parent's care, and listen to them for cues that they don't understand. Do not overwhelm them – allow them to set the pace. Show alternate ways of doing things when appropriate, but remember that there is more than one right way to do most things. Follow parent preferences as long as they are safe. Do not try to step in and change their routines. Instead, work to gain their trust.

Allow his parents to have times of respite. Give skillful, competent care, allowing them to have their own space. Encourage them to take time away, but respect their choice to check in on you. Try to blend into the background.

Make his parent's load easier to bear. Do routine equipment cleaning and maintenance, and keep the child's area neat and tidy. Do allow parents to do as much as they want to do (don't just take over).

Be aware of their losses and stresses. These include the day to day care without enough help, the loss of a dream (that their child will grow up healthy … or even grow up!), the loss of freedom, sometimes having every minute scheduled, and the lack of sleep, to name just a few. Many parents feel alone, with no time or energy to interact with friends, and their friends often just don't understand. Financial difficulties, potential marital problems, and difficult decisions that have to be made also press upon them. Among other things, they have to decide on Code or No-Code, treatment goals, which treatments are OK, and which school to use to get the help he needs while letting him have as normal a childhood as possible.

Be ready to help them deal with their losses. Listen with empathy, allow them to talk it through, and allow them to find their own answers. Help them find the information they need, and help them connect with support groups if they so desire.

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Also not every family and nurse will mesh, so make sure it is a good fit for you. When I started private duty peds, I had this vision that every case they sent me to would be just grand, but it wasn't.