Examining parental participation in a successful psychological intervention for young people with epilepsy and mental health difficulties: Results from a longitudinal qualitative study within a randomised controlled trial

Objective: Children with epilepsy may have significant mental health needs with detrimental impact on quality of life, and families often request support and intervention. This paper explores the change experienced by parents of young people with epilepsy and mental health difficulties receiving an integrated mental health intervention.

Methods: A qualitative study was conducted within a randomised controlled trial evaluating the Mental Health Intervention for Children with Epilepsy (MICE) psychological therapy in addition to usual care. Twenty-four families receiving the intervention were interviewed twice, at baseline and at six months, about their experience with their child's mental and physical health, and therapy. Transcripts were analysed inductively, idiographically and longitudinally using a combination of Interpretative Phenomenological Analysis (IPA) and Framework Analysis (FA). This combination allows us to begin our analysis with the detailed analysis of cases and then move to an appropriately higher level of generalization across the corpus.

Results: Analysis shows changes in how the parents report their experience of their child's difficulties between baseline and 6-month interviews. While parents tended to show some understanding of epilepsy and its effects on their child in the first interview, comparisons with the second interview show enhanced understanding along with improvements in their relationship with their child, and feelings about themselves as parents. These findings were particularly relevant for parents of children with autism spectrum disorders and/or intellectual disability.

Study limitations: Not all families were able to benefit equally from the therapy, with some declining to participate or being lost to follow up and mothers being more forthcoming than fathers to take part in the research. It would have been interesting to also interview families 12 months post-baseline to gain insight on the longer-term impacts of the intervention.

Conclusions: The qualitative findings presented here offer new insights into parental experiences of living with and attempting to assist a child with a complex condition. We would also hope the study will be helpful to researchers and clinicians working with a range of illnesses which impact families.