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UBC Theses and Dissertations

Caregiver burden and coping strategies in pre-surgical infant treatment of cleft lip and palate Gibson, Travis


Pre-surgical infant orthopedics (PSIO) in treatment of cleft lip with or without cleft palate (CL/P) refers to treatment provided within weeks of birth, up to lip closure surgery at 3-6 months of age. Current research supports limited benefits of PSIO including improved nasal symmetry and decreased need for revision surgeries. PSIO requires frequent appointments, as well as daily maintenance of treatment appliances by primary caregivers. It has been suggested that the limited benefits provided by this treatment may not justify the increased burden; however, proponents suggest that objective measures of burden are not appropriate as PSIO may relieve caregiver anxiety and provide a sense of empowerment. At present, studies investigating the psychological effects of PSIO on caregivers are limited. The purpose of this study was to compare objective and subjective treatment burdens, and psychological response in primary caregivers of children born CL/P receiving PSIO to those not receiving PSIO. Treatment load was measured by the duration of treatment and number of appointments. Caregivers’ subjective perception of treatment burden was assessed using a series of visual analogue scale questions. Caregiver psychological response was assessed using the following psychometric tests: Maternal Confidence Questionnaire, Stress Scale for Parents of Cleft Lip and Palate Children, Parenting Stress Index 4th Edition, and Coping Response Inventory. Preliminary pilot data of 8 participants is reported in this dissertation. Objectively assessed treatment load was greater in PSIO, with patients requiring an average of additional 7.3 appointments over 96 days. Caregivers reported that PSIO entailed significant subjective emotional and time burdens, and significantly increased the time burden of overall CL/P treatment at 3 months. No statistically significant differences in caregiver confidence, stress, or coping strategies were detected between PSIO and non-PSIO groups. Findings should be interpreted with caution due to the limited sample size at this time. Review of pilot study data indicates that multi-centre involvement will be required to successfully recruit an adequate sample for complete statistical analysis.

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