BC Council for Families

by Jan Radford and Sally Thorne

Over the last decade, several trends have led to increasing numbers of families living with technology-dependent children in their homes. First, there is an improved survival rate for children with serious and complex medical problems due to advances in health care technology. Second, the escalating costs of institutional care have forced serious consideration of less expensive options. And third, there has been a growing recognition that children deserve family life if at all possible.

The term technology-dependent covers a wide range of conditions and circumstances. Technology dependence has to do with requiring medical devices to compensate for the loss of a vital body function. For example, a child requiring a wheelchair for mobility depends on that technology to maintain a reasonable quality of life. In contrast, there are other instances in which the maintenance of life directly or indirectly depends on the technology itself. Examples are the tracheostomy (opening in the throat to permit air exchange), the gastrotomy (opening into the stomach to permit direct tube feeding), and the ventilator (mechanical device that forces air in and out of the lungs). The children requiring these technologies also represent a range of conditions. For example, some might be survivors of premature birth who develop chronic lung diseases. Others might have experienced traumatic brain injury or catastrophic illness resulting in neurological impairments. Thus the children often have extremely complex medical problems and nursing care need, with the technology representing only one part of the constellation.

In order to understand what living with a technology-dependent child means to families, it is important to recognize that each situation is unique. Some children, for example, require continuous technological support, while others might require it only in times of acute illness or at night. Some children have conditions which permit them to be mobile, to communicate, and to actively participate in aspects of family life; others have very few abilities for such active involvement. Clearly, each of these factors will play a vitally important part in shaping family life when a child with a medically complex condition is cared for at home. Since more and more families (whether birth families or foster families) are now facing the challenges of technology-dependent children in the home, it is increasingly important for all who work with families to develop an idea of what family life can be like under these circumstances. The move from hospital to community typically includes a tremendous shift in responsibility from trained professional experts, working in shifts over the 24-hour-day with all sorts of equipment and resources at their disposal, to family members who are expected to perform similar tasks with much less formal training, considerably fewer resources, and no relief at the end of a work shift! What people often forget is that these technology-dependent children are so medically complex that, in hospitals, they are usually cared for in intensive care units, so families are having to strive for the levels of care management that professionals take years to learn.

In addition to the work of physical care-giving, these families are naturally also involved in all of the usual aspects of family life that most of us consider a full time demand; they parent their children (including the technology-dependent child and his or her siblings), they do laundry, meal preparation, household chores and so on. Like other families, they may be challenged with their own health problems, emotional conflicts or financial difficulties, especially when parents are forced to leave the workforce to provide full time care to their children at home.

In addition, the circumstances of their child make such factors as appropriate housing and transportation infinitely more complicated than they would be for most of us. The usual trials don't go away, and the routines for the technology-dependent child must be arranged around them. In our study of children with gastrotomy feeding tubes at home, for example, we have heard stories of mothers whose care routine is constant from 5 a.m. through to midnight, seven days a week! In other cases, a parent or caregiver must check the child hourly, even through the night, for respiratory tract suction or positioning. Needless to say, parents in these families are often overwhelmed with physical exhaustion, profound sleep deprivation, and social isolation. Their lives can become completely consumed by their care responsibilities.

Despite the desperate conditions that many of these families face, we have been astounded at how remarkably well many of them seem to cope with circumstances that would defeat most of us. And when they can cope successfully, life with a technology dependent child can be wonderfully rewarding. However, when we appreciate the daily unrelenting challenges they face, it becomes apparent how vitally important family support can be. Often it can make the critical difference between family health and complete collapse.

In an ideal world, support for such families would come from an active network of family, friends and professionals. Sadly, formal health care services and supports are often inadequate and friends and relatives may shy away from getting involved. Often, significant support can be as simple as assisting with laundry, housework or grocery shopping, if only people would recognize the need and make themselves available. Most important to many families is the need for respite, or “time out.” In some cases, this respite involves holiday time, in which the family is relieved of its responsibilities completely for a period of rest and recuperation. However, on a more frequent basis, many parents simply need a few hours to participate in other activities, see friends, or take a nap. The kind of babysitting that most parents take for granted is simply not available to parents of technology-dependent children. Because the child's needs can be so complex, and because a life and death emergency situation may arise quite suddenly, the respite caregiver will often need extensive specialized instruction. Even trained professionals may need lots of guidance and direction in order to carry out the care and make the critical judgments that may be necessary. However, if family members and friends are willing to learn, their knowledge of the family and of the child can make them ideal supporters by giving parents a needed break.

Another important role that supporters can play is in helping parents of technology-dependent children learn how to negotiate the system.

Often, there may be services and supports to which they are entitled, but they simply do not have the time and energy to hunt them down or make application. In many communities, a major source of information and instrumental support will be other families in a similar situation. Unlike other circumstances in which support groups bring people with similar circumstances together, these families may only be able to manage telephone contact with each other. And often the most important role a supporter can play is to help facilitate the connections between people. No matter how strong their support network with other families, a backup system of professionals on which they can call is often crucial. For most of these children, crises are predictable, and even a first rate emergency department may be ill suited to providing the specialized services that are required.

Although they become the unquestioned experts in their child's care, parents' input may well be ignored when decisions are made by schools and health-care services. It goes without saying that supportive services should be streamlined so that they minimize family disruption. However, even services explicitly intended to support such families often have rules and regulations that preclude adapting to what families think they need. In addition, since many health-care professionals are based in hospitals and therefore have little idea of what having such a medically-complex child at home is really like, parents often don't get the respect that they deserve for what they accomplish. In order to manage at home, they must adapt routines and procedures to focus on what is essential and to make the caregiving realistic. When professionals are rigid in their approach and unimaginative about the value of such adaptations, they often complicate family life by inducing guilt and insisting on what they consider to be ideal care.

Clearly, what families with technology-dependent children at home need and deserve is respite, relief, and respect. No single formal service or support will provide this for them. In order for them to manage well and stay strong as a family, supports must be created within social and professional networks. As more and more families take on this kind of intense and demanding challenge, those who work with families will have to be increasingly aware of what life is like when technology-dependent children are cared for at home. And for these families living on the edge, our understanding and support can make an incredible difference.

Jan Radford, RN, MSN, is Clinical Nurse Specialist at Sunny Hill
Health Centre for Children. Sally Thorne, RN, PhD, is Associate Professor at the UBC School of Nursing.

This article first appeared in Family Connections, published by the BC Council for Families.