The role of resilience for good quality of life in epilepsy and factors promoting such resilience
Research team: Prof. Ann Jacoby (AJ), Prof. Tony Marson (TM), Prof. Gus Baker (GB), Prof. Margaret Whitehead (MW), Dr. Adele Ring (AR), Dr. Joanne Taylor (JT)
Research evidence highlights the negative impact of epilepsy for individual quality of life (QOL). Whilst poor seizure control has been consistently associated with reporting of poorer QOL, some people with epilepsy (PWE) continue to experience good QOL in spite of ongoing seizures. The aim of this study was to identify the different factors that contributed to reporting of good QOL in the context of ongoing seizures and to understand the different ways in which these factors acted to influenced QOL.
In-depth topic guided interviews were conducted with 67 PWE previously recruited to a large randomised controlled trial of epilepsy medication (SANAD Study). Following ethical approval, relevant information from the SANAD database was retrieved and eligible individuals were contacted by post. Of 210 people approached, 70 registered their interest in taking part in the study and 67 (32 male/35females; age range: 24-65 years) formally consented to take part in an individual audio recorded interview.
During interviews participants were encouraged to talk about their QOL and the different things that contributed to their QOL. They were also asked about their initial reactions to epilepsy diagnosis, impact of epilepsy, coping, support, perceptions, seizure status, other health conditions/problems, thoughts about the future and their ideas about improving QOL and reducing epilepsy impact.
Transcripts of interviews were analysed – read and re-read, key themes relating to epilepsy impact and QOL and the links between different themes were identified.
Findings: Loss was a key concept in understanding impact of epilepsy, people talked about key losses including driving licence, job, confidence, independence, well being (worry, depression). Many people experienced some initial impact in the early months following diagnosis, however, in the majority of cases where seizures became controlled, losses such as confidence, were regained and life was largely as it had been prior to seizure occurrence. However, for a small number of people there was continuing loss of confidence and anxiety regarding possibility of future seizures and this had an impact on QOL. Good QOL in many respects reflected limited impact of epilepsy on life activities and psychological well being. People who reported good QOL in the context of ongoing seizures identified a number of different influences that limited impact of epilepsy including seizure-related factors, individual strategies and psychological processes, social factors and wider contextual influences. A number of people said that epilepsy had little impact on their life because of the type, frequency or minimal after effects of seizures. Others described ‘personal’ strategies and psychological processes such as ‘carrying on as normal’, ‘finding other things to do’ or ‘not dwelling on things’ that helped either to limit loss or replaced a prior loss. For others the passage of time had led to a gradual acceptance of life changes. Practical and emotional support from family, friends and employers also helped to limit impact, providing encouragement, understanding and positivity that help PWE to continue with day to day activities. People often described a combination of influences that had contributed to good QOL in the context of continuing seizures.
Pubication: Taylor J, Jacoby A, Baker GA, Marson AG, Ring A, Whitehead M (2011). Factors predictive of resilience and vulnerability in new-onset epilepsy. Epilepsia 52(3): 610-618.