Integration of medical technology-dependent childcare vital for good family function
MedWire News: Mothers who successfully integrate the care of their medical technology-dependent children into family life and who have good psychologic wellbeing have better functioning families than those who do not, suggest study findings.
"Providing long-term home care for a child who is dependent on medical technologies such as mechanical ventilation, tracheostomy tubes, supplemental oxygen devices, feeding tubes, or intravenous nutrition can be a daunting task for families," say Valerie Toly (Cape Western Reserve University School of Medicine, Cleveland, Ohio, USA) and colleagues.
To investigate how different families cope with such a situation and assess factors linked to better or worse family functioning, the researchers recruited 82 mothers of technology-dependent children (16 years or younger) who were acting as the child's primary caregiver. The mothers were aged at least 18 years and their child had a stable course of illness for at least 2 months prior to recruitment.
The children mostly had neuromuscular conditions (45.1%), such as cerebral palsy, or respiratory conditions (22.0%), such as bronchopulmonary dysplasia. None of the children had cancer.
The women were interviewed twice, at enrollment and after 12 months. The Actual Effect of the Chronic Physical Disorder on the Family, a 10-item subscale of the 25-item Normalization Scale, and the Feetham Family Functioning Survey (FFFS) 25-item scale were used to evaluate family functioning at both time-points. The Center for Epidemiological Studies-Depression (CES-D) Scale was used to measure maternal depression.
Contrary to expectations, normalization, caregiving duration, and home nursing hours were not significantly associated with family functioning.
Indeed, the only significant predictor of worse family functioning at 12 months was maternal depression, which was experienced by around a third of the women in the study.
"A mother's depression plays a greater role in family functioning than the child's severity of illness," commented Toly in a press statement.
The team suggests that "an intervention to address high levels of depressive symptoms of these mothers is essential to optimizing family functioning."
Other factors predicting improved family function at 12 months were better family functioning at baseline and children no longer needing assistive technology at 12 months.
For children still requiring assistive technology at 12 months, integration into family life is critically important for good family function and maternal psychologic wellbeing, say the authors.
For example, "mothers integrate technology-dependent children into the family by being flexible about when to give medications and food," commented Toly. Inclusion in events such as family holidays can also help improve integration.
Writing in the journal Research in Nursing and Health, the researchers conclude: "this study provides evidence to guide delivery of care for technology-dependent children and their families by objectively assessing parents' level of depressive symptoms as well as family functioning, providing support by means of referral for mental healthcare support as needed, and verbally encouraging caregivers for a job well done."
By Helen Albert