Parents’ skills crucial for pediatric patients

Sicker patients increase value of assessment

Home care agencies providing care to pediatric patients must pay careful attention to the competency of the parent caregiver to make sure he or she is ready for the challenge of caring for a child on a ventilator or a feeding tube.

"The actual assessment of a caregiver’s competency doesn’t differ according to the patient’s age. We have to be aware that parents have not always been prepared for their responsibilities, and the patient is usually unable to help in his or her own care," says Carol Behnke, RN, manager of education for Melmedica Children’s Healthcare in Country Club Hills, IL. "If the child is old enough to participate in the assessment, we include him or her, but the majority of our questions are for the caregiver," she notes. "Questions are open-ended and cover practical knowledge as well as theory related to the patient’s specific needs.

"We often find parents who have watched the hospital nurses provide care, but they have not done it themselves," Behnke continues. "While these parents can verbalize how to suction, they’ve never actually suctioned. Other parents did have some experience with hands-on care while the child was in the hospital, but not enough that they feel comfortable providing it with no nurse for assistance," she adds.

Preparing patients and parents

In these cases, the home care nurse must work with the parents to make sure they get the hands-on experience they need to feel comfortable. "We’ll spend time with the family before discharge from the hospital, and we spend the first day — the transition day — with them," Behnke explains. The transition day is when the nurse thoroughly assesses the parents’ abilities as caregivers, she adds. "We demonstrate how to suction, and then we have the parents perform a return demonstration. We also have the parents provide care while we observe.

"While our nurse cannot be available in the home every day as a hospital nurse can be, we can be reached by telephone 24 hours a day," Behnke point out. Nurses also give parents written instructions with pictures explaining care of suction tubes, nebulizers, and feeding tubes, she says.

"One of the reasons some parents are not comfortable when the child comes home is because the equipment they have in the home is different from the hospital equipment," explains Karen Gunter, RN, MSA, president of Melmedica Children’s Healthcare. "It looks different; it sounds different; it functions differently; and these differences overwhelm the parent," she explains.

For this reason, Gunter’s agency staff members often suggest that the family have the durable medical equipment (DME) provider obtain the same equipment that will be used in the home and place it in the hospital for at least several days prior to discharge. "While we recommend this, it doesn’t always happen for reasons that include either the DME company, the hospital, or the family," Gunter admits.

Home care nurses have to spend more time assessing and educating parents, she notes. "We used to see more in-depth training in the hospital, with parents even spending a couple of nights in the hospital with the child or with the child going home for a weekend, then returning to the hospital for assessment," Gunter says. "The challenge for home care nurses is the fact that no two homes are exactly alike in terms of the parents’ abilities to care for the child," she explains. "Homes with single parents or two parents who are working have to juggle more of their time and effort to learn how to care for the child because they are not with the child all day. We also see difficulties when the primary caregiving parent becomes ill and the other parent doesn’t know what to do."

While her agency doesn’t have a social worker on staff, there are social worker consultants available for specific cases, she adds. "The majority of assistance our families need are resources for the time when the child ages out of insurance coverage and needs access to state waiver programs. All of our nurses have the information about resources to help parents obtain the assistance they need," Gunter says.

While it sometimes is easier to make contacts for the family, it’s important to just provide information and let the parents orchestrate the contacts, she points out. "These children will need lifelong care, and parents have to assume responsibility for that care. We can’t allow them to depend upon us to do things they need to do. We make it as simple as possible, with step-by-step information on how to access the services they need."

Be sure to train long-term caregivers, too

One thing home care nurses need to keep in mind as they assess caregiver capabilities and teach the family is the actual makeup of the group of adults who will provide care. "You might be teaching grandparents who are very comfortable with providing care, but they will be going back to their home in two months," Gunter explains. "In this case, make sure that the parent or other adults who will be the caregiver for the long term are assessed thoroughly to ensure they will be able to provide care without the assistance of the grandparents," she says.

In addition to assessing knowledge and ability to perform the caregiving tasks, look at the physical requirements of providing care, Gunter suggests. "If mother is petite and her child is her size or bigger, how will she physically move the child to provide care?" she asks. Finding other caregivers to help the mother is an option that must be explored in this case, Gunter adds.

If the nurse believes the parents truly don’t know how to provide care and can’t be taught, there are several steps to take, Behnke explains. "We work with the case manager and may arrange a temporary admission to the hospital while we explore our options," she says.

In some cases, the child may be placed in a foster home that has adult caregivers who can provide care and [where] the parents still can spend time with their child, Behnke says. "The goal has to be the best care for the child," she says.