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

Keywords:

• Cerebral palsy
• parent support
• infants
• early diagnosis
• qualitative

Disclosure statement

KW and JS are developers of PACT. They receive no financial benefit from PACT. No other potential conflict of interest was reported by the author(s).

Data availability statement

Access to data collected for this project is restricted to the original research team as participants did not consent to have their data shared publicly.

Additional information

Funding

This work was supported by a National Health and Medical Research (NHMRC) Research Fellowship [RB: 1105038], NHMRC Centre of Research Excellence (CRE) [RB, KW: 1116442] and Queensland Government Advance Queensland Innovation Partnership (partnerships16–103). The researcher involved with interviewing had no prior familiarity with the participating parents and was not involved in the child’s assessment or treatment of CP. The authors gratefully acknowledge the time and support of the parents and health professionals who took part in this study.