Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning

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. 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.

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

“…Because of the increasing impact of CP, (7,38,39) healthcare utilization increases with age (40). Nevertheless, health needs often remain unmet (41)(42)(43).…”

“…Social and autonomous citizenship roles were frequently hindered by stigmatization, inaccessible contexts, unsupportive healthcare and support services. Contextual factors may be more important than individual characteristics in defining citizenship roles ( 38 ).…”

Transitional milestones and developmental challenges for adults with cerebral palsy

“…1 This important work demonstrates our obligation to understand the lived experience of people with CP by asking the people who are most impacted by it. 1 What are your challenges? How can we minimize barriers and encourage potential?…”

“…Standardized measurement instruments to assess physical and mental capacity, level of performance, and influence of the environment, as well as impairments, limitations, and restrictions in daily living are crucially needed. The International Classification of Functioning, Disability and Health Core Set for adults with CP developed by Noten et al is a means to that end (i.e., standardization of assessing functioning across the life course) 1 . This important work demonstrates our obligation to understand the lived experience of people with CP by asking the people who are most impacted by it 1 .…”

“…The International Classification of Functioning, Disability and Health Core Set for adults with CP developed by Noten et al is a means to that end (i.e., standardization of assessing functioning across the life course) 1 . This important work demonstrates our obligation to understand the lived experience of people with CP by asking the people who are most impacted by it 1 . What are your challenges?…”