For mothers of children who require ventilators, oxygen, IVs and other tools to live, integrating the care of the technology-dependent child into family life allows their family to function better, according to a study.
“It’s about the perception of the child’s illness,” lead researcher Valerie Toly, RN, PhD, CPNP, of the Frances Payne Bolton School of Nursing at Case Western Reserve University, said in a news release.
Toly’s research is one of the first longitudinal studies to investigate how families function and reach normalcy once children leave the hospital equipped with technology to keep them alive. She studied 82 mothers, recruited during visits to a hospital’s specialty clinic.
The mothers were interviewed and given six surveys after leaving the hospital, and then again 12 months later to track changes in the mother’s psychological wellbeing, family functioning and normalcy.
The mothers ranged in age from 22 to 66. About 75% had some college education, a third worked full time and 75% had other children, some of whom also were technology dependent.
About a third of the mothers tested for clinical depression, and that percentage increased by 7% at the second visit. (Mothers with high levels of depression were provided mental health resource information.)
At the beginning of the study, children ranged in age from 6.75 months to 16.83 years, with an average age of 6.41 years. Nearly half of the children had medical issues related to neuromuscular diagnoses such as cerebral palsy, and half of the children needed more than one technology. Overall, study participants needed an average of 45 hours of home-care help at the first interview, and that need grew by the second interview.
Toly said children in the study represent a high-risk, vulnerable group, and noted three children and one mother died during the year between interviews. “This is much higher than the general population,” she said.
For those who continue to require technology, Toly said, integrating the child into family events is critical. She has seen mothers pack up the technology and take the child along with other siblings to soccer practice and other family events. In another instance, one mother missed an annual family camping trip because of the extra work required to include the technology-dependent child in the trip; the following year, the extended family pitched in and built ramps, allowing the mother and child to go on the trip.
Mothers can “integrate technology-dependent children into the family by being flexible about when to give medications or food,” Toly said. In contrast, adhering to rigid schedules can interfere with what others in the family need to do and thus create problems.
Also, Toly said, “a mother’s depression plays a greater role in family functioning than the child’s severity of illness.”
The study appears in the February issue of the journal Research in Nursing & Health. To read a summary and access the study via subscription or purchase, visit http://bit.ly/AeKZR5.