Leaps and bounds for Cerebral Palsy care

[object Object] [object Object]

Growing up as the daughter of a local GP in Blackbutt, a small town in the South Burnett,  Dr Katherine Benfer was well-versed in the challenges of providing medical care in rural communities.

It’s little wonder that this UQ researcher has found herself working in rural parts of India’s West Bengal and its capital, Kolkata, training health workers to assess and provide intervention for babies at risk of Cerebral Palsy.

Dr Benfer is the creator of LEAP-CP: Learning through Everyday Activities with Parents – a community-based, parent-delivered early detection and intervention program for infants at high risk of Cerebral Palsy. The program uses smartphone technology to screen babies for the condition.

“If a ‘general movement’ pattern is lacking in a baby,” Dr Benfer explains, “we know there is a 98 percent likelihood of Cerebral Palsy. What makes LEAP-CP unique is that it provides individualised family support in the home through a peer trainer – a mother from the same community.”

As Dr Benfer elaborates, in resource-poor contexts, mothers of a child with a disability face numerous barriers to access the support they need to be their baby’s first and best teacher.

“LEAP-CP uses a problem-solving approach to empower these mothers to help their child using materials and resources from their own environment, and this results in better outcomes for the child and their family.”

Once a baby is diagnosed, parents are taught active learning therapies to help the child improve movement, feeding, play, vision and cognition, and to provide age-appropriate learning experiences.

The next step for the UQ researcher is to bring LEAP-CP home, and apply this unique program within the Australian context. As part of an NHMRC Early Career Fellowship, Dr Benfer is now adapting LEAP-CP from an Indian cultural context to provide culturally appropriate care for remote Indigenous Australian communities.

As Dr Benfer explains, there are considerable parallels and distinctions. “While the culture and context in remote Australian communities are distinctly different from that in rural India, in both contexts families face numerous barriers preventing access to early diagnosis and tailored care for their child with cerebral palsy.”

With research from the national CP Register indicating that Indigenous Australian children are at increased risk of Cerebral Palsy, LEAP-CP offers an opportunity to help close the gap for both Indigenous health and CP care.

As Dr Benfer insists, children with a disability shouldn’t face further disadvantage due to their location or culture.

“I believe all people deserve opportunities to thrive in their context, and that’s the philosophy behind LEAP-CP. We’re removing some of the barriers faced by children with disabilities, enabling them to flourish.”

LEAP-CP has the potential to provide a cost-effective, scalable and evidence-based program for families in rural communities and low- and middle-income countries around the world.

This story is featured in the Winter 2018 edition of UQMedicine Magazine.  View the latest edition here. Or to listen, watch, or read more stories from UQ’s Faculty of Medicine visit our blog,  MayneStream.