Factors impacting positive and negative participation of young people with cerebral palsy: a Delphi study of consumers and health professionals

Figures & data

Box 1. Questions asked to participants in Rounds I and II.

Lists the questions asked to consumers and health professionals during Rounds I and II of the Delphi survey followed by the Likert scale that participants rated the items on from 1 (extremely unimportant) to 7 (extremely important).

Table 1. Consumer characteristics.

Consumer characteristics	Number of consumers
Consumer type (n = 25)
Person with CP	11
Caregiver of a person with CP	14
Age of Person with CP (n = 25)	Person with CP [Caregiver report^a]
15 to 17 years of age	2 [4]
18 to <26 years of age	9 [10]
Type of CP (n = 25)
Right Spastic Hemiplegia/Monoplegia	4 [2]
Left Spastic Hemiplegia/Monoplegia	1 [3]
Spastic Diplegia	4 [3]
Spastic Quadriplegia	2 [5]
Dyskinesia (Athetosis/Dystonia)	0 [0]
Hypotonia	0 [1]
Ataxia	0 [0]
GMFCS (n = 24)^b
I	3 [5]
II	3 [3]
III	3 [1]
IV	1 [3]
V	0 [2]
FCCS (n = 25)
I	7 [10]
II	3 [1]
III	1 [1]
IV	0 [1]
V	0 [1]
VSS (n = 25)
I	8 [7]
II	3 [4]
III	0 [1]
IV	0 [2]
Associated Impairments
Intellectual Impairment (n = 10)
Mild	4 [4]
Moderate	0 [2]
Severe	0 [0]
Epilepsy	2 [5]
Epilepsy resolved by age 5	0 [2]
Visual Impairment	3 [2]
Hearing Impairment	1 [1]
Education (n = 24)^b
Currently in high school	2 [4]
Completed high school	3 [7]
Incomplete high school, left before year 12	1 [1]
Currently enrolled in higher education (e.g., University/TAFE)	4 [2]
Completed higher education (e.g., University/TAFE)	0 [0]
Employment
Full-time paid employment	1 [1]
Part-time paid employment	0 [1]
Casual paid employment	3 [2]
Full-time unpaid volunteering	0 [0]
Part-time unpaid volunteering	0 [0]
Casual unpaid volunteering	1 [1]
Attending activity programmes	0 [0]
No occupation/employment	6 [9]
Living
Living in family home	9 [12]
Living away from family home, with support	0 [1]
Living away from family home, independently	2 [1]

^aAll caregivers were mothers of the person with CP.

^bOne participant did not complete this section.

GMFCS: gross motor function classification system; VSS: viking speech scale; FCCS: functional communication classification system.

Table 2. Health Professional characteristics.

Health Professional characteristics	Number of Health Professionals
Clinical role working with people with CP (n = 43)^a
Speech Pathologist	13
Physiotherapist	13
Occupational Therapist	12
Paediatrician	3
Psychologist	1
Physical Therapist	1
Length of time working with young people with CP (n = 43)
<1 year	1
1 – 5 years	15
6 – 10 years	5
10+ years	22
Ages of young people with CP worked with (n = 43)^b
Children/Adolescents (aged 0–14 years)	40
Adolescents (15–17 years)	40
Young adults (18–26 years)	36
Adults (26+ years)	27
Country (n = 43)^c
Australia	37
Northern Ireland	1
United Kingdom	1
Taiwan	1
Sweden	2
Canada	1

^aSome health professionals identified their roles as being a mix of clinical and research positions.

^bMost health professionals reported working across different age groups.

^cCountry that the health professional lives and works with young people with CP.

Figure 1. Participant response rates across the Delphi rounds and question sets for adolescents and young adults.

Lists the number of participants that responded to each survey round split into two sections, one section shows the responses to questions about adolescents and the other shows the responses to questions about young adults.

Figure 2. Items considered extremely important to the positive (white boxes) or negative (grey boxes) participation experiences of a. Adolescents and b. Young adults with CP according to consumers (young people with CP and caregivers) and health professionals.

Two circles showing the items rated as extremely important and mapped to different sections of the family of Participation-Related Constructs framework. One circle shows the items extremely important for adolescents and the other circle shows items extremely important for young adults.