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Table 1 Details of participants and interview schedule

From: Self-regulation in Barth syndrome: a qualitative perspective of adolescents, adults and parents in the U.K

ID

Phase 1—month (interviewed with)

Phase 2—month (interviewed with)

Total interviews

01

Alone

Alone

2

02*

Mother/father

Father

2

03

Alone

Alone

2

04

Mother

Mother

2

05

Alone

Alone

2

06

Alone

Father

2

07*

Mother/father

Mother

2

08*

Mother/father

Father

2

09

Father

Father

2

010*

Mother

Mother

2

011

Mother

Mother

2

No. interviewees

4 interviewed alone, 7 with parent/s

3 interviewed alone, 8 with parent/s

22

  1. Age range 9–27, mean 15 years
  2. *Under 14 years of age at study entry, interviews conducted with parents