Parents’ reactions to the diagnosis of cerebral palsy: Associations between resolution, age and severity of disability
Abstract
BACKGROUND: For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. AIMS: of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution. METHOD: Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS: Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking. CONCLUSIONS: Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.
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As a rule, the mother becomes the primary caregiver while the father maintains or doubles his work activity.
“As a rule, it is the mother who becomes the primary caregiver while the father maintains or doubles his work activity [15,16].”
From “The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care (2023) · cites this paper as [15]
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- Authors
- Schuengel, C., Rentinck, I. C. M., Stolk, J., Voorman, J. M., Loots, G. M. P., Ketelaar, M., Gorter, J. W., & Becher, J. G.
- Affiliations
- Amsterdam Public Health (NL)
- University Medical Center Utrecht (NL)
- CanChild Centre for Childhood-onset Disability Research (CA)
- Corresponding author
- Schuengel, C.
- Venue
- Child Care Health and Development
- Publisher
- Wiley
- Published
- 2009-08-05
- Volume
- 35
- Issue
- 5
- Pages
- 673-680
- ISSN
- 0305-1862 (ISSN-L)
- 1365-2214
- OpenAlex
- W2149941216
- Cited by
- 90
- References
- 23
- Citations by year
- 2026: 3 · 2025: 1 · 2024: 3 · 2023: 5 · 2022: 4 · 2021: 6 · 2020: 2 · 2019: 8 · 2018: 1 · 2017: 8 · 2016: 6 · 2015: 10 · 2014: 7 · 2013: 6 · 2012: 7
- FWCI
- 7.06
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Child Care Health and Development (publishedVersion)
- PubMed (publishedVersion)
- VU Research Portal (publishedVersion)
- Digital Academic REpository of VU University Amsterdam (Vrije Universiteit Amsterdam) (submittedVersion)
- Pure Amsterdam UMC (submittedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (submittedVersion)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Psychiatry and Mental health › Cerebral Palsy and Movement Disorders
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Keywords
- cerebral palsy, parental anxiety, child age, disability severity, motor function, Gross Motor Function Classification System, parental support needs
- MeSH terms
- Adaptation, Psychological, Adolescent, Age Factors, Cerebral Palsy, Child, Child, Preschool, Disability Evaluation, Female, Humans, Infant, Male, Parents, Surveys and Questionnaires, Severity of Illness Index, Social Support, Stress, Psychological, Truth Disclosure, Motor Skills Disorders
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