Interviews were conducted with 30 parents between February
and August 2011; the majority took place at the participant’s
home, with others in non-clinical settings. All participants
provided written informed consent. Interviews were conducted
by one researcher (CC) and lasted between 30 and 90 min. The
interview topic guides (Box 1) were used to explore parents’ views
and experiences and revised in light of emerging findings. This
study was approved by the NHS Ethics Committee South West 4
(ref. 10/H0102/55).