Coaching caregivers helps empower families of infants at high risk of cerebral palsy (CP), and may help improve their quality of life — highlighting the importance of family-centered care, a study suggests.
The study, “LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome,” was published in the journal Disability and Rehabilitation.
“The physical, cognitive, and behavioral constrains of infants at risk of or with a developmental disorder usually induce challenging caregiving demands,” the researchers said.
While it is known that families of children with cerebral palsy generally experience more stress and increased financial and psychological burdens, less is known about the families of infants at risk for the disease — that is, before a diagnosis has been made.
The impact on caregivers’ mental health may affect their interactions with the child, and increase the infant’s risk for social, cognitive, and behavioral problems.
To address this problem, researchers at Beatrix Children’s Hospital, in the Netherlands, conducted LEARN2MOVE 0–2, to test the benefits of an early intervention, family-centered program for families and infants at very high risk for cerebral palsy.
In this randomized controlled trial, the COPCA-intervention — “COPing with and CAring for infants with special needs” — was compared with regular infant physiotherapy.
COPCA is a relatively new approach that builds on two components: a family part, in which a physiotherapist coaches caregivers to empower them to make their own decisions; and a neurodevelopmental component, based on the Neuronal Group Selection Theory, with a hands-off approach that challenges the infant to find its own motor strategies.
The physiotherapist also coaches caregivers to implement interventions into daily life activities.
A recent analysis revealed that one year of COPCA or physiotherapy resulted in similar infant neuromotor, cognitive, and behavioral outcomes for the infants at risk, prompting researchers to suggest that combinations of “ingredients” from different approaches are likely to work best for effective early interventions.
Researchers now studied the effects of the two interventions on family function, and on infants’ activities and participation.
Their analysis focused on the following aspects: families’ empowerment, stress, coping, and quality of life; infants’ functional outcome and quality of life; specific interventional elements related to family and infant outcomes; and the impact of the severity of the child’s physical disability on family outcomes.
The study included 43 infants, from birth to age 9 months, at very high risk for CP, who were randomly assigned to one year of COPCA (23 children) or a year of typical infant physiotherapy (20 children).
Family and infant outcomes were measured by questionnaires and structured interviews with parents, completed at the study start (baseline), at six months, and at one year after. These assessments examined families’ empowerment, coping strategies, and stress, as well as infants’ self-care, mobility, social function, communication, and daily living skills.
The data revealed there were no significant differences in family or infant outcomes between COPCA and physiotherapy groups.
However, the families’ quality of life improved over time within the group receiving COPCA. There was no improvement noted for the families receiving typical infant physiotherapy.
An analysis focusing on specific contents of COPA also revealed that caregiver coaching was associated with better family empowerment.
In addition, family outcome was not related to the severity of the infant’s motor impairment.
“One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes” the researchers said. They emphasized, however, that the number of participants was too small “so it is not possible to draw clear conclusions.”
“Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centered services,” they said.
“In future research, we have to increase knowledge about working elements within early intervention to be able to combine them to create a mix of active ingredients, which possibly should be tailored to the needs of infant and family. A mix of active ingredients paves the way for an effective, evidence based, comprehensive type of early intervention, to achieve optimal infant and family function,” the team concluded.