Carer adaptation to childhood epilepsy: The role of the Epilepsy Specialist Nurse.

Carer adaptation to childhood epilepsy: The role of the Epilepsy Specialist Nurse.

Kate Greene

2013

Positive carer adaptation to childhood epilepsy is essential as poor adaptation can be detrimental to child behaviour outcomes. Fulfilment of carer psycho social and informational need is important to facilitate successful adaptation to childhood epilepsy. The role of the Epilepsy Nurse Specialists (ESN) is well suited to meet psychosocial need and so ESNs are hypothesised to improve carer adaptation and in turn child behaviour. This study investigated carer adaptation in geographical areas in the north of England with and without ESN provision using telephone interviews with carers of children with epilepsy. It was found that ESN provision had no significant effect on carer adaptation, psycho social needs of the carer, or child behaviour. Reasons for why no effect was found is attributed to the significant difference in condition severity and comorbidity between the groups that require more complex care needs. Limitations and future research directions are discussed.

1. Parent Response to Child Illness (PRCI). Participants were assessed in three outcome measures.
2. Parent Report of Psychosocial Care Scale (PRPCS). The second area of assessment was carers' perceived need for information and support.
3. Child Behaviour Checklist (CBCL). The third measure is a measure of child behaviour using the CBCL (Achenbach & Rescorla, 2001).
4. Hague Seizure Severity Scale (HASS). Participants were also asked to provide information relating to their child's seizure severity, their mental health and demographic information so intergroup comparisons could be made.
5. General Health Questionnaire (GHQ). Mental health of the carer was assessed using the short form of the GHQ (Goldberg & Hillier, 1979).
6. Demographic Information. Additionally participants were asked to complete a questionnaire containing demographic information, and also information relating to age of seizure onset, time of last seizure, seizure frequency, anti-epileptic drug (AED)therapy and adherence to this medication.

Lancaster University

data/SPSS.sav

Greene2013

Chen, Jhih-Ying

Open

English

Data

LA1 4YF

Dina Lew

MSC

Developmental Psychology
Developmental Disorders

Participants in this study are parents or carers of children with a diagnosis of epilepsy aged between 6 and 16 years of age. This age was range was selected as it is the appropriate age range for the main measure of carer adaptation. Two NHS trusts were recruited for the study, one that provided an Epilepsy Specialist Nurse (ESN) for its service users (Bolton) and one that had no ESN provision (Pennine). Suitable participants were identified from these trusts and invited to take part in the study using either ESN or paediatrician with a special interest in epilepsy caseload lists. Parents who accepted the invitation to take part formed the sample for the study which consisted of 33 participants with access to an ESN and 17 participants without ESN provision.

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