Parents' experiences of early screening for cerebral palsy: A qualitative reflexive thematic analysis.

Abstract

Aim: To explore parents' experiences of early screening for cerebral palsy (CP) in three Australian states.

Method: This is a qualitative description study using semi-structured interviews. Participants were parents of children who had CP (n = 5), or high risk of CP (n = 10), or no CP (n = 11) at 2 years, and had completed early screening for CP. Data were analysed using reflexive thematic analysis.

Results: Three themes describe parents' experiences of early screening. (1) 'A new, destabilized world' explores how parents are thrown into an unexpected parenting pathway with the birth of an infant at high risk of having developmental challenges. (2) 'Early is best … but not easy' explores parents' desire for information, screening, and developmental support, to be delivered as early as possible, even when this was experienced as emotionally challenging. (3) 'Trying to reach stable ground' describes the resources and actions parents used to move forward and reach a place of stability and control. These included access to knowledge, proactive 'next steps', and supportive relationships with health-care professionals.

Interpretation: Parents valued and desired early information and support for their child regardless of a diagnosis of CP. Early screening was most valued when it was clearly associated with practical supports, such as early intervention and access to funding.