Feasibility of the Family Activity Adaptation Model in Improving Bimanual Hand Use in Children with Hemiplegic Cerebral Palsy

Young children with HCP experience difficulties performing age-appropriate daily activities such as self-care and play. Research in neuroplasticity has shown that intensive, task-specific training in early development is ideal to maximize functioning in children with HCP. The aim of this study was to analyze the feasibility of a new manualized clinical guideline, Family Activity Adaptation Model (FAAM), via Telehealth to coach families to develop daily activities and routines that facilitate functional bimanual skills in young children with hemiplegic cerebral palsy (HCP). Ten caregivers and children with HCP (3-7 years) received virtual training on how to embed bimanual intensive training (HABIT) into their everyday activities and routines on their own at home for 90 minutes a day, 5 days a week over 8 weeks. Caregivers and children received virtual coaching using the FAAM method 2 times per week. FAAM Activity Analysis was used to describe manual development. Daily activity logs were used to assess family adherence and home program feasibility. Bimanual functional goal performance and satisfaction was measured using the Canadian Occupational Performance Measure (COPM). Perceived changes in overall bimanual functional skills were evaluated using the Mini-Children’s Hand Use Experience Questionnaire (Mini-CHEQ). Caregiver stress, burden and program satisfaction was monitored using the Parenting Stress Index (PSI-4-SF), the Ease of Caregiving for Children measure and a caregiver satisfaction survey. The measures were assessed immediately prior to (pretest), midpoint (burden measures only, repeated measures ANOVA) and immediately after (posttest, Wilcoxon Sign Rank Test) the intervention. All families made statistically and clinically significant improvements in goal performance (p=.008) satisfaction (p=.007), and overall bimanual hand use (p=.035). All families completed daily logs and practiced strategies for an average of 81.37 (SD=7.069) minutes a day. Caregiver burden and stress remained consistent throughout the study and all caregivers reported satisfaction with the program. This is the first study to manualize a family centered, telehealth-delivered intensive motor training program. This study adds a continuum of care and access to services for children and families with limited resources. The study supports clinicians with home program design and meets the individual needs of families using resources in their natural environment.