Chronically ill technology-dependent infants and children

Nursing Role

Chronically ill and Technology Dependant Children

The advancements in medical technology has rendered possible the management of chronic functional disabilities outside the hospice environment. However, this involves a shift in the responsibility of patient management from the health care setting to home setting where parents are actively involved in care provision. This new role imposes considerable stress on parents who have to manage care giving alongside their professional life. Asides the fact that parents are already strained by the chronic condition of their child, they now have to deal with the vital responsibility of being the regular care providers of the technology dependant child. Further, the special needs of these children in the school setting, presents more problems for the already stressed parents. Under these circumstances the role of the nurse as a trainer, caregiver and a proactive participant in facilitating outside the hospice care stands out clearly. Let us have a brief overview of the issue.

Children dependent on assistive devices require special attention and care both in the house as well as in the school environment. There is no need to mention the enormous amount of emotional burden that parents have to deal with in a situation where the life of their child is dependant on the assistive device. The need for constant surveillance and assistance seriously affects their social life. Surgical procedures such as tracheostomy and gastrostomy, in particular, demand constant monitoring and hence continuous assistance. Nurses have a significant role to play in easing out the strain of the parents and making home care and school care much easier. In a study conducted on 18 caregiving parents it was revealed that 88.9% of them availed of professional nursing services during the in- home care of their child. [Barbara A Montagnino] This indicates that increasingly parents depend on nurses in helping them provide care in the home environment.

Nurses are in charge of training the patients and the parents in the skills necessary for them to manage the required procedures at home on their own. For example, in the care of a child with tracheostomy, parents need to be taught to watch out for the breathing patterns, assess the indications for suctioning, and to do resuscitation if the child suffers from suspension of breathing. Nurses have to teach parents how to change tubes and how to respond in case of accidental decannulation. Much care is needed in the suctioning process as frequent suctioning or increased suction pressure may cause suction related bleeding. [Louis Dixon] Similarly, in case of gastrostomy, parents must to be made aware of the appropriate hygiene and how to react to problems when they develop. Typical problems include feeding tube coming out, tissue development or leaking around the stoma, etc. Visits from home care nurses would mean a lot of positive difference. Most importantly, nurses can help parents understand the emotional aspects of caring at home and prepare them for the task. This would greatly assist the parents in their new role of caregivers and definitely reduce transitioning stress.

First and foremost, however, is for the nurses to constantly update themselves of the new technological equipments and be knowledgeable about available community resources, and to develop the nursing skills that are needed for training and assisting the parents in their roles as caregivers. It is generally observed that school nurses (unlike nurses in acute care settings) are not well equipped in handling intensive care situations involving technologically dependant children. [Roberta S. Rehm]. Thus, the need for nurses to upgrade their skills in handling assistive technical gadgets becomes more pronounced. The most frustrating and stressful situation for parents is when school authorities fail to show an active interest in the needs and care requirements of the technologically dependent children. Here again, school nurses, as health care deliverers in the school, can exhibit a proactive approach. Increased parent- nurse rapport is one way to reduce the parental concern for children with special needs. Clearly, nurses are central in delivering quality medicare for dependant children and in promoting it in the school setting. They have to play a coordinated role with parents and school administration to ensure that required level of care is delivered to the dependent children. [Roberta S. Rehm]

It needs to be highlighted here that schools nurses may not be always available as in many cases they are entrusted with the duty of overseeing the health care needs of several schools. Thus, teachers are often looked upon to learn health management skills that are necessary for assisting technology dependant children. Though teachers, in general, agree to provide extra care and monitor the medically fragile and technology dependant children, they are in most cases reluctant to intervene under emergencies for lack of knowledge of the procedures and for fear of the liabilities involved. However, surveys in this direction have shown that most teachers are willing to learn interventions that are specific to caring a particular child in the class, rather than willing to undergo general training programs. [Roberta S. Rehm] Thus, it rests upon the nurses to train teachers in the technical and simple medicare issues specific to a care dependant child. Nurses also train 'special education aides' in specific procedures. For example children with tracheotomy might need regular suctioning, tube feeding and sometimes catheterization. So, clearly, nurses have a multifaceted role of trainers, counselors, liaison officers and most importantly, health care deliverers for medically fragile and technology dependant children both in the home as well as community settings.