COMMUNICATING A DIAGNOSIS OF CEREBRAL PALSY: AN ANALYSIS OF CAREGIVER SATISFACTION & STRESS

Objectives: Caregiver satisfaction with the initial professional communication of a diagnosis of cerebral palsy (CP) has been rarely assessed. It is also unknown whether satisfaction with elements of the diagnosis communication process correlate with later caregiver stress and psychosocial dysfunction.

Methods: As part of the implementation of a population-based registry of children with CP, caregiver satisfaction with the process by which diagnosis was originally communicated by a professional was assessed using a 5 point Likert scale and related to child, family and situational characteristics. Satisfaction measures were then correlated with current caregiver stress as measured objectively by the Parenting Stress Inventory (PSI).

Results: During the registration process, 59 consecutive caregivers (55 mothers) were questioned. Overall 62% (35/59) were satisfied with the disclosure process with satisfaction ranging from 69% (41/59-hopefulness) to 92% (54/59-honesty) for professional qualities, and from 61% (36/59-sufficient information provided) to 78% (46/59-understandable) for disclosure content. Satisfaction was found to be especially related to the quantity and content of information given at the time of the disclosure session. PSI scores, both total and for parental distress, correlated significantly with both the severity of the child's CP (GMFCS) and caregiver satisfaction with varying elements of the disclosure process.

Conclusion: Overall caregiver satisfaction with the process by which a diagnosis of CP is given appears to be good. Together with the severity of a child's intrinsic CP, it appears to relate to later parental adjustment to a setting of chronic disability suggesting a potential portal through which improvements in information delivery may result in later better familial adaptation to disability.