Table 3.

Frequencies for final agreed codes

Code	Sub-code	Frequency
Anxiety (P)		106
	Anxiety for self (P) Anxiety for others (P) Concern for child’s future General anxiety (P)	4 17 27 58
Change in routine (C)		84
Anxiety (C)		60
	Anxiety for self (C) Anxiety for others (C) General anxiety (C)	7 5 48
Challenging behaviour (C)		44
Understanding (C)		40
	Limited understanding helps (C) Limited understanding hurts (C) Good understanding helps (C) Good understanding hurts (C)	2 34 2 2
Fear (P)		34
	Fear for self (P) Fear for others (P) General fear (P)	6 9 19
No/low impact (C)		33
Fear (C)		31
	Fear for self (C) Fear for others (C) General fear (C)	7 7 17
Overwhelmed (P)		30
Loss of friends and community (C)		29
	Friends (C) Loss of community (C)	14 15
Stress (P)		28
Specialist input (P/C)		26
	School input (P/C) Loss of specialist support (P/C)	14 12
Positive emotions (C)		24
No/low impact (P)		23
Distress (C)		22
Awareness (C)		19
	Limited awareness helps (C) Limited awareness hurts (C) Good awareness helps (C)	7 9 3
Competing responsibilities (P)		19
Changes in routine (P)		19
Behaviour change (C)		18
Low mood (P)		18
Uncertainty (P)		17
Self-efficacy (P)		16
Distress (P)		15
Low mood (C)		14
Boredom (C)		13
Positive emotions (P)		13
Always together (P)		12
Finance (P)		12
Confusion (C)		11
Communication (P)		11
	Good communication (P) Poor communication (P)	3 8
Motivation (C)		11
Stress (C)		11
Total responsibility (P)		10
Frustration (C)		10
Sleep (C)		10

In all cases (P) denotes that the code relates to the parent/carer and (C) denotes that the code relates to the child. We only report codes that were mentioned at least 10 times (other than sub-codes). The 9 codes that were excluded on this basis (with frequencies in brackets) are: Boredom (P,7); Lonely (P,5); Frustration (P,5); Food (P,5); Food (C,5); Communication (C,3); Loss of Community (P,6); Anger (P,2); Under Pressure (P,4)