Serious Congenital heart disease (CHD) requiring early surgical intervention, leads to severe distress on the part of the affected families, poorly addressed by the limited mental health resources available.
Objective: To explore the mothers’ experience of diagnosis and treatment of their infant with CHD by means of an in-depth interview and to investigate the consequences of this interview.
Methods: As part of a longitudinal study, a carefully structured in-depth interview was conducted with mothers of two-month old infants, asking them to reflect on their infant’s experience and their own experience of the diagnosis and treatment. Mothers were asked for feedback following the interview.
Results: Of the twenty-eight mother-infant dyads recruited, one mother declined an interview following her infant’s death. Themes emerging from feedback indicated that mothers found the interview helped them to put together what had happened to them and their infant.
Discussion: The researchers reflected on this unexpected outcome and suggest several reasons for this. It was the first time mothers told the story from the beginning; it provided an opportunity to review their experience with a ‘third eye’; they had been asked to reflect on their own and their infant’s internal world in a way that was novel to many mothers. There may also be an element of timeliness, as preliminary 9-month data suggest these issues may have closed off by then.
Conclusion: The extended interview may offer a valuable intervention for mothers and families, especially where resources are limited requiring efficient use of skilled professionals.