Experiences and Therapy Needs of Parents With an Infant at High Risk for Development of Unilateral Spastic Cerebral
Cornelia H Verhage1, Maria J C Eijsermans1, Madelon Kleingeld2
1Center for Child Development and Exercise, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
Insights
Parents of infants with unilateral perinatal brain injury need information and support for their child's neurodevelopment. Therapists play a key role in guiding parents and building their confidence.
Area of Science:
- Pediatric Neurology
- Developmental Pediatrics
- Rehabilitation Medicine
Background:
- Infants with unilateral perinatal brain injury face risks for unilateral spastic cerebral palsy.
- Early intervention is crucial for managing neurodevelopmental outcomes.
- Parental experiences and support needs are vital in the first year of life.
Purpose of the Study:
- To explore the experiences of parents with infants diagnosed with unilateral perinatal brain injury.
- To identify the therapy needs of these parents during the first year.
- To understand parental perspectives on their child's development and support.
Main Methods:
- Qualitative study involving semistructured interviews with 16 parents.
- Participants included parents of children with and without diagnosed unilateral spastic cerebral palsy.
- Thematic analysis was used to analyze interview data.
Main Results:
- Parents described their journey as "an unexpected journey."
- Key themes included stressful initial experiences, a need for developmental information, the value of therapist guidance, and growing parental confidence.
- Information needs regarding future neurodevelopment were prominent.
Conclusions:
- Parents require comprehensive information about their child's neurodevelopmental trajectory.
- Physical and occupational therapists are essential in providing information, monitoring progress, and guiding parental support.
- Therapist involvement can offer reassurance and enhance parental confidence.
Abstract:
Aim: To understand experiences and therapy needs of parents with an infant with unilateral perinatal brain injury and at high risk for unilateral spastic cerebral palsy in the first year. Patients and Methods: Sixteen parents (from 8 children with unilateral spastic cerebral palsy, 3 without) diagnosed with unilateral perinatal brain injury participated in semistructured interviews. Data were analyzed using thematic analysis. Results: The overarching theme, "an unexpected journey," included 4 subthemes: (1) "A roller coaster start"-stressful initial experiences on a neonatal intensive care unit; (2) "Wishing for a crystal ball"-need for information on (future) development; (3) "Reaching for the stars"-value of therapist guidance in supporting infant development; (4) "Growing seeds of confidence"-increased parental confidence in their child's development and their role. Conclusion: Parents have information needs about their child's (future) neurodevelopment. Physical or occupational therapists provide information, monitor motor progress, and guide parents in supporting development and can offer needed reassurance.
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