Reflections on Participation at Home, As Self-Reported by Young People with Cerebral Palsy

Figures & data

Table 1. Characteristics of young people with CP.

	Age	Gender	CP Type	GMFCS	MACS	VSS	FCCS	PEMG	II	AI	Education	Employment	Living
YP1	17	Non-Binary	Left Spastic Hemiplegia	II	II	I	I	I	No	None	Currently in high school and higher education (University) head start program	Casual paid employment	Living in parents’/family home
YP2	20	Non-Binary	Left Spastic Hemiplegia	II	I	I	I	I	No	None	Completed all years of high school (including Year 12)	No employment/volunteering	Living in parents’/family home
YP3	23	Male	Spastic Triplegia	IV	II	II	I	I	No	Epilepsy (resolved by age 5), Some hearing impairment (includes conductive hearing loss), Scoliosis, Stutter	Currently enrolled in higher education (University/TAFE)	Casual unpaid volunteering	Living in parents’/family home
YP4	16	Female	Spastic Diplegia	IV	I	I	I	I	No	Some visual impairment (wears glasses)	Currently in high school	No employment/volunteering	Living in parents’/family home
YP5	25	Female	Right Spastic Hemiplegia	I	I	I	I	I	No	Some visual impairment (wears glasses)	Completed higher education (University)	Full-time paid employment	Living in own home with partner
YP6	24	Female	Spastic Quadriplegia	V	IV	II	II	I	No	Some visual impairment (wears glasses)	Completed higher education (TAFE)	No employment/volunteering	Living in parents’/family home
YP7	17	Male	Left Spastic Hemiplegia	I	II	I	I	I	No	None	Currently in high school	No employment/volunteering	Living in parents’/family home
YP8	24	Male	Left Spastic Hemiplegia	I	II	I	I	I	Mild	Some visual impairment (wears glasses)	Completed higher education (TAFE)	Part-time paid employment	Living in parents’/family home
YP9	22	Female	Spastic Quadriplegia	III	II	III	II	II*	No	None	Currently enrolled in higher education (University)	Casual paid employment	Living in parents’/family home
YP10	17	Male	Spastic Quadriplegia	IV	III	II	I	I	Mild	Some visual impairment (wears glasses)	Currently in high school	Casual paid employment	Living in parents’/family home
YP11	24	Female	Ataxia	II	II	IV	IV	IV*	Mild	Some visual impairment (wears glasses)	Completed all years of high school (including Year 12)	No employment/volunteering	Living in parents’/family home
YP12	20	Female	Hypotonia	II	II	III	IV	III*	Mild	None	Completed all years of high school (including Year 12)	No employment/volunteering	Living in parents’/family home
YP13	26	Male	Left Spastic Hemiplegia	II	II	III	IV	IV*	Mild	Some visual impairment (wears glasses)	Completed some years of high school (left before Year 12)	Casual unpaid volunteering	Living away from parents’/family home, with support
YP14	25	Female	Right Spastic Hemiplegia	II	II	I	I	I	No	Some visual impairment (wears glasses)	Completed higher education (University)	Full-time paid employment	Living away from parents’/family home, independently
YP15	15	Female	Right Spastic Hemiplegia	I	II	II	I	I	No	Stutter	Currently in high school	No employment/volunteering	Living in parents’/family home

YP (Young Person); GMFCS (Gross Motor Function Classification System); MACS (Manual Ability Classification System); VSS (Viking Speech Scale); FCCS (Functional Communication Classification System); PEMG (Primary Expressive Mode Group); AAC (Augmentative and Alternative Communication); II (Intellectual Impairment); AI (Associated Impairments).

*Type of AAC used: YP9= Gesture; Typing; YP11= ProLoQuo2Go, Makaton signing, Typing, Writing; YP12= ProLoQuo2Go; and YP13= ProLoQuo2Go, Gesture.

Table 2. Picture my participation (PMP) measure for the level of attendance (A) and involvement (I) in activities in the home³⁰.

	Personal Care		Family mealtime		My own health		Meal preparation		Cleaning at home		Caring for family		Caring for animals/pets		Family time		Quiet Leisure		Total
	A	I	A	I	A	I	A	I	A	I	A	I	A	I	A	I	A	I	A/36	I/27
YP1	4	3	4	2	3	3	3	2	2	2	3	2	3	2	3	2	4	3	29	20
YP2	4	3	3	2	3	2	2	2	3	2	2	3	4	3	3	2	3	3	27	22
YP3	4	2	2	2	4	3	2	2	1	1	1	1	4	3	4	2	4	3	26	19
YP4	4	3	4	3	3	3	3	2	3	2	2	2	1	1	4	3	3	3	27	22
YP5	4	3	4	3	3	3	4	3	4	2	2	3	4	2	4	3	4	3	33	25
YP6	4	2	4	2	4	3	3	2	1	1	1	1	1	1	4	3	4	3	26	18
YP7	4	3	4	3	3	2	1	1	1	1	1	1	2	2	3	3	4	3	23	19
YP8	4	2	4	3	4	3	1	1	3	3	1	1	3	2	4	3	4	3	28	21
YP9	4	3	2	2	4	3	1	1	3	3	3	3	3	2	2	3	1	1	23	21
YP10	4	2	4	3	4	1	3	3	3	1	4	3	2	2	4	3	4	3	32	21
YP11	4	3	3	3	4	3	3	3	4	3	3	3	3	3	3	3	4	3	31	27
YP12	4	3	4	3	3	3	2	2	3	3	3	3	4	3	3	3	4	3	30	26
YP13	4	2	4	2	4	3	3	3	3	3	1	1	2	2	3	2	4	3	28	26
YP14	4	3	2	3	3	3	4	3	4	3	2	3	2	3	4	3	4	3	29	27
YP15	4	3	4	3	4	3	3	2	3	2	3	3	2	1	4	2	3	3	30	22
Median	4	3	4	3	4	3	3	2	3	2	2	3	3	2	4	3	4	3
IQR	0	1	1	1	1	0	1	1	0.5	1.5	2	2	1.5	1	1	1	0.5	0

A= Attendance: 4- Always, 3-Sometimes, 2-Not really, 1- Never.

I= Involvement: 3-Very, 2-Somewhat, 1- Not.

IQR= Interquartile range.

Table 3. Themes and subthemes.

Themes	Subthemes
(1) My CP characteristics can make doing everyday activities at home more difficult	Having difficulty moving my body
	Having difficulty moving my hands
	Having difficulty speaking and communicating
	Having difficulty managing sensory information
	Having a chronic level of pain that can be exacerbated by doing activities
	Feeling fatigued
	Needing to use regular techniques to manage my pain, muscle tension, and build strength
(2) My own thoughts, emotions, and sense of achievement influence the things I do at home	My own opinions and attitudes My level of motivation, persistence, and productivity
	My own emotions and mental health
(3) Having the right equipment and environment enables me to do the things I want to do at home	Being at home in an accessible environment
	Having a quiet and peaceful home environment
	Using assistive aids and equipment
	Being able to use technology
(4) Having the right caregiver supports helps me to do the things I want to do at home	Having formal supports and services available at home
	Having informal help and support from people at home
	Having funding available for supports at home
(5) Being accepted, included, and supported by the people in my home influences the things I do	Building and maintaining relationships with the people around me
	Being included and interacting with the people around me
	Feeling accepted and emotionally supported

Arvidsson P, Dada S, Granlund M, Imms C, Bornman J, Elliott C, Huus K. Content validity and usefulness of picture my participation for measuring participation in children with and without intellectual disability in South Africa and sweden. Scand J Occup Ther. 2020;27(5):336–48. doi:10.1080/11038128.2019.1645878.

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Data availability statement

Deidentified data supporting the findings of this research may be available on request from the corresponding author (JQ). Data are not publicly available because they include information that could compromise research participant privacy.