Children's understanding of epilepsy: A qualitative study.

PURPOSE: To use a qualitative research approach to determine children's understandings of epilepsy and their epilepsy treatment. METHODS: Children aged 7-16 years with physician-confirmed active epilepsy (i.e., having had an epileptic seizure in the past year and or currently taking antiepileptic drugs (AEDs), and not known to have an intellectual disability, were invited to participate. Children had semi-structured interviews separately on two occasions. Between the first and second interviews, an observation of a routine epilepsy clinic appointment of individual children was conducted, and was then discussed during the second interview. Participatory research tools were used in both child interviews to facilitate discussions. Interviews were audio recorded and transcribed, pseudonymized and entered into NVivo (version 12, QSR International). Data were analyzed using a thematic approach. RESULTS: Twenty-three children of mean age 10.1 years (range 8-14), mean duration of epilepsy of 4.6 years (range 2-10) were enrolled. Twelve were 12 female; 7 had focal, 14 had generalized, and 2 had combined epilepsy; 20 were on monotherapy; and 16 had tried previous AEDs. All had an initial (first) interview; 20 were observed during a clinic appointment and had a second interview. Five broad themes emerged: understanding of epilepsy; understanding of seizures; understanding of medication; understanding of children's role in clinical appointments; influences on children's understanding. Children spoke about what epilepsy meant by describing the physical sensations of having a seizure or through the act of taking medication. Children described the role they had, or felt they should have, but reported challenges in being meaningfully involved in clinical appointments. While healthcare professionals were initial information nodes, epilepsy information from parents appeared to be more significant for children. CONCLUSIONS: The perspectives of children with epilepsy are valuable for clinicians to understand; assumptions should not be made that children's views can be accessed via parents. Clinicians need to be constantly aware of children's views and ways of understanding and communicating about their epilepsy. To support this, the research - drawing on children's words, meanings, and stories - was used to inform an easily accessible, gender-neutral, animation about epilepsy that provides information about the condition, seizures, and medication (https://youtu.be/MO7xXL2ZXP8).

Pilot project of psychological services integrated into a pediatric epilepsy clinic: Psychology Adding Value - Epilepsy Screening (PAVES).

RATIONALE: Children and young people with epilepsy (CYPwE) are particularly vulnerable to developing social, emotional, behavioral, and learning difficulties, which, if not identified or addressed at an early stage, can impact adversely on quality of life and long-term psychosocial outcomes. This paper describes the development of a screening protocol and a pathway of early, 'stepped' intervention, which aims to address this issue, together with initial outcomes. METHODS: The Strengths and Difficulties Questionnaire (SDQ) was completed by CYPwE and their parents prior to routine epilepsy clinic appointments. A traffic light system was devised to indicate the reported level of concern and a potential route through the early intervention pathway. RESULTS: Of those CYPwE screened, 53% were found to be experiencing elevated levels of mental health difficulties, which had not previously been identified, and had the opportunity to access an appropriate early intervention. Initial feedback on the PAVES pathway has been positive, with high levels of feasibility and acceptability indicated by young people, parents, and clinicians. CONCLUSIONS: The PAVES approach enables mental health difficulties to be identified and appropriate intervention accessed at an early stage, potentially improving long-term psychosocial outcomes for CYPwE. In addition, if found to be effective in larger trials, PAVES has potential to be adapted and generalized to other populations.

Validating the Essen Climate Evaluation Schema modified for people with learning disabilities in a low-risk secure forensic setting.

BACKGROUND: Research has shown that an empowering and nurturing yet challenging work climate is beneficial for people receiving clinical services as it increases patient satisfaction, motivation, engagement, therapeutic alliance and functional improvement. Therefore, for inpatients, monitoring, encouraging and understanding ward climate holds considerable potential for improving forensic mental health services. To date, the most widely employed tool for ward-climate, the Essen Climate Evaluation Schema (EssenCES), has been evidenced as useful in medium and high security hospitals, but little tested with people with learning disabilities or in low security services. AIMS: To establish the internal consistency and factor validity of the EssenCES, modified for easier reading, in a low secure hospital unit for people with learning disabilities. METHOD: Language in the EssenCES was simplified and picture supplements added to facilitate comprehension. Patients completed the scale as part of their clinical routine, supported by National Health Service (NHS) employed psychology assistants. The research team, entirely independent of NHS staff, extracted data from the electronic records of purposively sampled residents in a low-secure forensic hospital setting for people with learning disabilities. FINDINGS: Two hundred and twenty-seven records (70% men) were acquired. The EssenCES was shown to have good factor validity and retained the original three factor model including the subscales: therapeutic hold, safety and cohesion. One single-item from the 'therapeutic hold' subscale was removed to improve the internal consistency (p < 0.05). CONCLUSIONS: This study adds preliminary support for the use of the EssenCES (with removal of one item) in individuals with learning disabilities within low-risk secure forensic hospital settings.