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Table 1 Financial and social support received by individuals with TSC and their household

From: Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey

Characteristics

    

Financial and social support received by individual with TSC (n = 71)

Disability allowance

 

58 (82)

 

Support from social services

 

21 (30)

 

Support from social worker

 

13 (18)

 

Help completing benefit applications

 

10 (14)

 

Psychological counseling

 

5 (7)

 

None

 

9 (13)

 

Financial support received by primary caregiver (n = 64)

Carer allowance

 

23 (36)

 

Carer credit

 

2 (3)

 

Other

 

3 (5)

 

None

 

36 (56)

 
  

Primary caregiver

(n = 64)

Partner/spouse

(n = 43) a

Other household members (n = 15) b

Use of NHS services by household (n = 64)

Yes

24 (38)

6 (14)

1 (7)

No

40 (63)

34 (79)

13 (87)

Prefer not to answer

0

3 (7)

1 (7)

General practicec

19 (79)

6 (100)

1 (100)

Counselingc

12 (50)

2 (33)

0

Respite carec

7 (29)

1 (17)

0

Hospitalc

6 (25)

2 (33)

0

Otherc

2 (8)

0

0

  1. Data are n (%)
  2. Abbreviations: NHS = National Health Service; TSC = tuberous sclerosis complex
  3. a Only caregivers who reported that their partner/spouse is involved in the care for the individual with TSC.
  4. b Only caregivers who reported that their parent, sibling, child, or other relative is involved in the care for the individual with TSC.
  5. c These responses were only for participants who answered “Yes” to use of NHS services.