Suzie Noten1,2, Lorenzo A A Troenosemito1, Chonnanid Limsakul1,3, Melissa Selb4,5, Vincent de Groot6, Manin Konijnenbelt7, Daniëlle M F Driessen8, Sander R Hilberink1,9, Marij E Roebroeck1,2. 1. Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, the Netherlands. 2. Rijndam Rehabilitation, Rotterdam, the Netherlands. 3. Department of Orthopedic Surgery and Physical Medicine, Prince of Songkla University, Songkhla, Thailand. 4. ICF Research Branch, Nottwil, Switzerland. 5. Swiss Paraplegic Research, Nottwil, Switzerland. 6. Department of Rehabilitation Medicine, Amsterdam Movement Sciences, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands. 7. De Hoogstraat Rehabilitation, Utrecht, the Netherlands. 8. Libra Rehabilitation & Audiology, Eindhoven, the Netherlands. 9. Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands.
Abstract
AIM: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. METHOD: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. RESULTS: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. INTERPRETATION: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.
AIM: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. METHOD: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. RESULTS: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. INTERPRETATION: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.
Authors: Suzie Noten; Melissa Selb; Lorenzo A A Troenosemito; Deborah E Thorpe; Elisabet Rodby-Bousquet; Wilma M A van der Slot; Marij E Roebroeck Journal: Dev Med Child Neurol Date: 2021-11-20 Impact factor: 4.864
Authors: Manjula Manikandan; Kevin Foley; Jessica Gough; Sarah Harrington; Éabha Wall; Fiona Weldon; Jennifer M Ryan; Claire Kerr; Aisling Walsh; Jennifer Fortune Journal: Front Rehabil Sci Date: 2022-06-03
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