Breaking the cycle of invisibility: a mixed methods inquiry into the disclosure behaviours and experiences of children living with epilepsy and their parents
Benson, Ailbhe
(2016)
Breaking the cycle of invisibility: a mixed methods inquiry into the disclosure behaviours and experiences of children living with epilepsy and their parents.
PhD thesis, Dublin City University.
Disclosing a child’s epilepsy to others external to the nuclear family presents a salient challenge for children with epilepsy (CWE) and their parents. However, a systematic review revealed that empirical evidence regarding how such populations experience epilepsy disclosure is limited. The core contribution this study makes is the explication of CWE’s and parents’ epilepsy disclosure behaviours and experiences, and the elucidation of the relationships between CWE’s and parents’ epilepsy disclosure behaviours and demographic/clinical characteristics,
psychosocial wellbeing and illness attitudes. This mixed methods study involved two phases: 1) semi-structured interviews with CWE (n=29) and their parents (n=34); and 2) a cross-sectional survey of 72 parents and 47 CWE. Findings revealed that CWE and their parents adopt varying disclosure management strategies, ranging from voluntary disclosure to concealment. CWE and their parents identified many barriers to and enablers of disclosure, including: the desire for normalcy; others’ reactions; the condition’s invisibility; media coverage of epilepsy; emotional
responses to the diagnosis; the complexity of epilepsy; self, other and public perceptions of, and attitudes towards epilepsy; and seizure characteristics. Greater concealment amongst CWE and parents was significantly correlated with: 1) CWE reporting greater stigma, and poorer illness attitudes and health-related quality of life; and 2) parents responding negatively to the child’s illness, perceiving greater stigma and reporting fewer epilepsy-related interactions with CWE.
This study provides a nuanced understanding of the disclosure process engaged in by CWE and parents, enhancing our knowledge of their disclosure strategies and targets, the content and situational context of their disclosure exchanges, barriers to and enablers of disclosure, and the consequences of disclosure in doing so. Overall, the findings suggest that greater concealment is associated with more negative outcomes for CWE and parents. Interventions to assist CWE and parents to navigate epilepsy disclosure could beneficially impact on their psychosocial wellbeing.
Metadata
Item Type:
Thesis (PhD)
Date of Award:
November 2016
Refereed:
No
Supervisor(s):
Lambert, Veronica and Gallagher, Pamela
Uncontrolled Keywords:
children with epilepsy;CWE; psychosocial wellbeing