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Laura's care book: a survival kit for home health care.

Two and a half years ago, my daughter, Laura, was born two months early. She suffered from respiratory distress syndrome at birth and spent a week on a respirator. A few days later, she developed hydrocephalus due to a grade IV brain bleed. In addition, she was diagnosed soon after birth as having a rare genetic disorder. Despite all of this, she came home and was quite healthy for about 18 months. At that time, the main concerns with Laura were her severe mental and physical developmental delays.

At the beginning of her third winter, Laura became very ill with pneumonia and was hospitalized. She barely survived. After three weeks, she came home on oxygen with a diagnosis of chronic lung disease. It soon became apparent that her care at home had become too much to handle alone, especially since a baby sister, Amy, had just arrived three months earlier.

Throughout the fall preceding Laura's pneumonia, Eileen Siminger and I were working together through the collaborative efforts of Parent to Parent of Vermont and the University of Vermont graduate program in Essential Early Education. Our relationship began as part of a practicum experience designed to introduce students to families who have children with special needs. The goal of this experience was to provide the family with needed assistance while giving the student an opportunity to work with a family without any professional roles attached.

The philosophy of this practicum experience can best be described as family-centered. Laura's Care Book was the project: a book describing how to care for Laura. We wrote this article because we wanted to share the idea of Laura's Care Book with other parents whose children have many caregivers in their daily lives.

Laura's daily care at this time consisted of tedious and time-consuming feedings by bottle and pureed foods (six hours/day), six inhalation treatments followed by postural drainage and chest percussion therapy (four hours/day), physical and occupational therapy (one hour/day), hearing aid and glasses time, plus normal infant needs: baths, stroller rides, cuddling, diaper changes, playtime, etc. In addition, there was baby Amy, needing and deserving a similar amount of time and attention each day.

We realized very quickly that we couldn't do it all. We needed help. Thanks to the efforts of our wonderful pediatrician, we were able to get the help that we needed in the form of nurses, respite care workers, and babysitters. However, with all these people came a new problem: How to provide Laura with consistent high quality care when she had so many different caregivers in her life?

In her first six weeks of home nursing, Laura had 15 different nurses. Nearly all of the orientation of the nurses fell on us, Laura's parents. Training them all was exhausting for us, and the nurses could not later remember all that we said. In addition, correcting them was awkward at times. We realized that a book on how to care for Laura would solve this problem. As a non-threatening instruction manual, it would be a reference tool and could orient someone in a pinch until a parent could do it orally

PROCESS

The process of putting the book together was a collaborative effort on the part of many of the people involved in Laura's care. The first step was to define all of the areas to be included. Eileen and I took a look at Laura's daily schedule and determined all of the information that a caregiver or nurse would need in order to meet Laura's daily needs. We came up with the following categories:

1. Important Information. This includes parents' work numbers, in addition to phone numbers of doctors and other service providers (such as occupational and physical therapists); also, the names and numbers of emergency contact people (who to call if the parents cannot be reached).

2. Emergency Procedure. This describes what to do in case of a medical emergency. This includes the ambulance and the pediatrician's numbers, as well as the order in which to make the calls.

3. Out-of-Town Numbers. This is a slip of paper placed inside the binder listing the address and phone number of where the parents will be when they are out of town.

4. Brief Medical History. This section serves as a medical introduction to Laura for new caregivers.

5. Physical Therapy Positioning. Since positioning is so important for children with special needs, this section shows caregivers how to hold and position Laura to encourage proper growth and development.

6. Personal Care: Clothing. This describes where to locate clothing, what to do when it is dirty, diapering procedures, etc. It is important for caregivers to know family routines and preferences in these areas.

7. Mealtimes. This lists nutritional requirements, special dietary needs, positioning, food preparation, mealtime behavior (what to expect), sample menus, drinking (special requirements), required liquid intake, etc.

8. Glasses. This section discusses amount of time they should be worn each day, when to put them on, and patching procedure.

9. Hearing Aids. This page gives information on proper care, how to get them ready for use, the best way to put them in, when to wear them, and ways to encourage development while Laura is wearing them.

10. Bathtime. Here we list the proper technique and procedure and give information on her ear plugs.

11. Bedtime. This page lists rituals, position preference, bedtime behavior, and what to do if Laura won't sleep.

12. Oxygen. This category includes oxygen requirements and ways to properly care for Laura's equipment.

13. Pulmonary Care. Proper procedure is discussed, and Laura's daily needs and schedule are listed.

14. Playing and Having Fun. This section lists ways to play with Laura that will encourage her overall development. This section includes favorite games and activities such as peek-a-boo, mirror play, tracking objects, fun on the therapy ball, and the jungle gym.

15. Snug Seat. This seat allows Laura to have her hands free for play while sitting in a completely supported position. Suggestions are given for activities to engage in while Laura is in her seat.

16. Outside. Suggestions and requirements are given for going on outside walks, including converting the snug seat to a stroller and using the backpack.

17. Conclusion. The last page of the book includes a statement of thanks from us to the caregivers.

The categories will vary for each child and family and can reflect the child's needs, family values, routines, and traditions.

Once we determined the categories, Eileen and I began the process of writing the script and taking pictures to illustrate each section. Some of the information was gathered from occupational therapists and physical therapists, but most of the information came from my husband, Pete, and me. We planned several picture-taking sessions to accommodate Laura's energy level and our family's needs. The pictures show Laura engaged in daily routines and activities in her home. We included pictures of the whole family for the cover page.

When all the pictures were taken and the script was drafted, Eileen took the information and put it together in a binder. Each page was handwritten to give the book a homey, scrapbook appearance. Colorful stickers and illustrations were also used for this purpose. All materials were purchased in the local dime store and included: binders, stickers, white paper, picture corners, and plastic covers for each page.

OUTCOMES

Laura's Care Book has accomplished our main goal: to provide Laura with consistent, high quality care in a non-threatening way It does this by containing detailed instructions on all aspects of her care and also by setting a tone of the standards we expect for Laura's care. In other words, the effort and time spent preparing this book serves as an example of what we will do for Laura and sets a high standard for others to follow.

This book is a great resource. Unlike medical records, it is accessible to all caregivers and prevents things from being left undone due to a lack of knowledge (for example, wearing ear plugs during her bath). A wonderful benefit of the book is that it is a way to get to know Laura. The text and pictures depict activities and interaction between Laura and her family and give a sense of who she is apart from all of her medical problems.

The Care Book benefits Laura's caregivers in several ways. Many of Laura's caregivers have strong medical backgrounds but little experience in playing with kids. The Care Book has plenty of suggestions for play. Laura's needs are numerous, at times overwhelming, but the Care Book gives suggestions on how to meet them during daily routines. For example, the Care Book shows Laura wearing glasses and hearing aids while playing pat-a-cake. The Care Book details the entire range of Laura's needs, from eating and taking baths to chest percussion therapy and going outside. Her medical needs are balanced with her non-medical needs to remind nurses that there is more to a day than taking vital signs ! As parents, the Care Book brought us incredible benefits. Most importantly, it helped us realize how much we knew about our little girl with disabilities who has very limited communication skills. Construction of the Care Book was something concrete that we could do for Laura, more lasting than a bottle or diaper change.

With so many caregivers in our lives, it provided us with a way to assure consistent and high quality care for Laura, as well as a way to give instructions in a nonthreatening manner. It encourages caregivers to see us as resources, rather than feeling the need to call physicians or other caregivers. In addition, the Care Book has provided an element of control in that it has lessened the number of nighttime or weekend interruptions. We anticipate that the Care Book will be a way to see Laura grow and change, something parents as constant observers are often the last to see.

For other families, construction of a similar book can be a way towards empowerment or control over a difficult situation, even a way to assert their rights as a family. Its construction assures the family a role in the process of planning for their child's care. For new parents, researching and writing the book can be a learning experience, i.e., "How do I bathe my child safely?," etc. The construction of the book can also be a way to be more in control of the situation, even if most of the suggestions come from service providers.

If the Care Book is started soon after the arrival of a special child in the family, it can be a learning experience, a diary of how to care for the child, and, eventually, a reminder of days past. Begun as a process between parents and a service provider asking questions like "What do I need to know? the Care Book can be the impetus to the start of a positive outlook towards life with a child with special needs.

THIS CARE BOOK WORKS

The best part of Laura's Care Book is that it works, both in expected and unexpected ways. For Eileen, the book and this article were wonderful examples of an equal and satisfying partnership between a parent and a professional. For me, the book began as a way to train Laura's nurses to give consistent high quality care to Laura. The end result was healing; I had found something that improved the quality of life on a daily bas my little girl with severe disabilities.

Lucy Harding Schumer is assistant professor of geology and chairperson of the geology department at Middlebury College in Middlebury, Vermont. She holds a B.S. from Stanford University and received a M.S. and Ph.D. in geology from the University of Arizona. She lives in Middlebury with her husband, Peter, and children, three-year-old Laura, and one-year-old Amy.

Eileen A. Siminger works in the field of early childhood special education where she is currently an early education initiative grant coordinator. She holds a M.Ed. from the University of Vermont. She lives in Charlotte, Vermont, with her husband, John, and child, Li, who is 11 years old.
COPYRIGHT 1991 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991 Gale, Cengage Learning. All rights reserved.

Article Details
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Author:Schumer, Lucy; Siminger, Eileen
Publication:The Exceptional Parent
Date:Mar 1, 1991
Words:2028
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