It has frequently been shown that people with long term physical health conditions, like epilepsy, are more likely to have mental health conditions. Studies have shown people with epilepsy report high levels of shame, stress, social isolation and anxiety. Mental health interventions for people with epilepsy, particularly children, has been identified as an area for further research by the NHS.
Compassion based interventions have been effective with people with long term physical health conditions. These interventions aim to develop an individual's compassion towards the self and others in response to self-criticism or shame. This study aims to explore whether Compassion Focussed Therapy informed psychoeducation and Loving Kindness Meditation is a feasible and effective intervention for children with epilepsy.
Children and young people aged 12-17 years old who have a diagnosis of epilepsy and mild/moderate distress related to their health condition are eligible. Local clinicians in epilepsy services will be asked to identify potential participants. Up to six children/young people will be included in the study. Participants will complete outcomes measures (about their quality of life, mood and self-compassion) weekly before the intervention, for up to five weeks, and then weekly until the end of the intervention. The intervention will be three sessions with the lead researcher, conducted online via Microsoft teams. Participants will then have four weeks to practice Loving Kindness Meditation. They will then have a follow up session about how they found the intervention, what was helpful and what they would change. The results from the study will indicate whether Compassion Focussed Therapy and Loving Kindness Meditation is a beneficial therapeutic intervention for children with epilepsy and if further research in the area is warranted.
12-17 years old
Have a diagnosis of epilepsy. This is to be confirmed by the recruiting professional who will confirm via the participant's medical records.
Currently showing or reporting mild-moderate psychological distress: including anxiety, low mood or stress, in relation to their health condition, as identified by local clinicians recruiting to study.
Have access to a computer/internet enabled electronic device e.g. a tablet or mobile phone.
Presence of an Intellectual Disability. As this is a time limited intervention with a set protocol, there will not be opportunity to make adaptations to the intervention. Consistency across the participants is important to show any effect of the intervention.
Currently receiving any other mental health treatment in order to reduce extraneous variables from other mental health treatment.
Current report of self-harming behaviours as the research cannot monitor or manage risk.
Severe psychological distress e.g. depression, psychosis or an eating disorder, as this is likely to require specialist psychological support.
Single group
Compassion Focussed Therapy/Loving Kindness Meditation
Other interventionAfter a baseline of 3-5 weeks (randomly allocated) is completed, the participant will engage in three sessions of Compassion Focussed Therapy informed psycho-education and introduction to Loving Kindness Meditation (LKM). Following the third session, the participants will have four weeks to practice LKM, receiving weekly email reminders with guided self-help instructions and reminders to complete outcome measures. A final follow-up session will occur after the four weeks, to consolidate knowledge and skills with the participant, plus gather feedback on the intervention.
Idiographic shame and self-compassion measures
Idiographic shame and self-compassion weekly measures. Idiographic measures can be designed to ensure the relevant construct is measured by individual participants (Haynes et al., 2009). In this study, utilising idiographic measures will ensure we measure the constructs of shame and self-compassion more effectively than broader psychometric measures. Possible example shame question: "I have been bothered by other people's reactions to my seizures." Possible example self-compassion question: "I have been kind to myself when something has gone wrong."
Glasgow Epilepsy Outcome Scale for Young Persons (GEOS-YP)
The GEOS-YP was developed by McEwan et al. (2004) in Glasgow, UK. It is a measure of the impact of epilepsy on CYP's quality of life. Adolescents (aged 10 to 18) with a diagnosis of epilepsy co-produced the scale through focus groups and pilot studies, and found good face and content validity. Townshend et al. (2008) found good internal consistency (α = 0.91) and test-retest reliability (p = 0.75). Higher scores indicate better quality of life reported by the CYP. The GEOS-YP will be completed at baseline, pre intervention and at follow up.
PedsQL - parent/caregiver proxy report
The PedsQL was developed in the US as a measure of health related quality of life. The PedsQL has child and proxy versions that can be completed by parents/caregivers. The PedsQL is divided into age groups - the measures for 8-12 and 13-18 years will both be used in the proposed study. Upton et al. (2005) validated the UK-English version of the PedsQL, both self and proxy measures. The sample for proxy measures was 970 parents of children both with and without chronic health conditions. Varni et al. (2007) showed internal reliability scores of the scale to exceed 0.70 for proxy subscales, as well as demonstrating construct validity with the known groups approach. Upton et al. (2005) concluded the scale performed as well in the UK as the US. High scores indicate better health-related quality of life.
Self-Compassion Scale for Youth
The SCS-Y was developed by Neff et al. (2021). It contains six subscales (Self-Kindness, Self-Judgment, Common Humanity, Isolation, Mindfulness and Over-identification) and a total self-compassion score. The SCS-Y was based on an adult version of the scale and first validated for youth in the US. Cheung et al. (2023) validated the SCS-Y with a UK sample of 1104 participants aged 12-18 years old. Good internal consistency (α = 0.88) and concurrent validity (r = 0.84, p \< 0.01) were found. High scores indicate greater self-compassion.
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