When a baby is diagnosed at high risk of cerebral palsy: understanding and meeting parent need

Abstract

Purpose To explore the experiences and needs of parents with an infant diagnosed at risk of cerebral palsy (CP) and to receive feedback on a new online support program (Parenting Acceptance and Commitment Therapy; PACT). Materials and methods Eleven parents from eight family dyads (8 mothers, 3 fathers) with infants under 24 months of age (age range 10–24 months) recently diagnosed as at risk of CP as well as fourteen clinicians participated in this qualitative study through interviews. Results Parents reported conflicting emotions and grief. Further, they reported that they wanted honesty, support and normalisation of their experiences from clinicians. Parents pointed to a gap in service delivery in terms of non-pathologising psychological support specific to their needs. Clinicians reported a lack of skills in supporting distressed parents. Parent feedback on PACT was positive, with parents receptive to the online delivery. Conclusions Parents want acceptance without pathologisation, honesty, and flexible support. Clinicians working with children at risk of CP need training in grief awareness and support for their own coping. Health services should consider building better parental support into their systems of care. IMPLICATIONS FOR REHABILITATION Parents want clinicians to be honest, supportive and to normalise their grief Clinicians in rehabilitation would benefit from up-skilling in grief support Parental support should be built into systems of care for children with cerebral palsy