Longitudinal psychological well-being in caregivers of young children with cleft lip and/or palate.

Objective: Caregivers of children with chronic conditions can experience psychological distress and an impact on quality of life (QoL). Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Utilizing data extracted from The Cleft Collective cohort studies in the United Kingdom, this study investigated longitudinal psychological well-being in caregivers of young children with CL/P, to inform screening practices and early intervention.

Methods: Baseline (post-diagnosis) and 5-year questionnaire data were extracted for 525 caregivers (342 biological mothers, 183 fathers/partners). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, and the Hospital Anxiety and Depression Scale.

Results: QoL significantly improved from T1 (post-birth) to T2 (5 years) as reported by mothers and fathers/partners. At T2, scores on all measures were aligned with, or more favorable than, norms. A minority continued to report clinically significant levels of distress at 5 years. Predictors of poorer outcomes on all measures included a less positive life orientation, more negative appraisals of CL/P, less favorable baseline scores, lower healthcare satisfaction, and prior mental health conditions. Outcomes were also less favorable for caregivers of children with combined cleft lip and palate compared to other cleft types. Reductions in negative appraisals of CL/P were significantly associated with improved QoL over time.

Conclusions: QoL and psychological well-being in caregivers is generally positive at 5 years. A minority experienced poorer outcomes and routine assessment by a multidisciplinary team is therefore recommended. Targeting early negative appraisals may help to facilitate long-term caregiver adjustment.