‘A light in a very dark place’: The role of a voluntary organisation
providing support for those affected by encephalitis
Ava Easton1, Karl Atkin2, and Philippa Hare3
1 The Encephalitis Society, York, 2 University of York, York
UK, 3 Action Shapiro, Malton, York, UK
Voluntary organisations are seen as contributing to the “democratisation”
of health and social care. Little, however, is written about their role and this
paper, by focusing on the work of The Encephalitis Society, provides valuable insights
into the challenges facing voluntary organisations that represent the needs of those
with neurological disorders. Two empirical studies are presented: a review conduced
by the society, focusing on patients’ experiences of neurological services;
and an external evaluation of the society’s current provision. The first,
based on a postal survey if its members affected by encephalitis (n= 339), illustrates
the society’s advocacy role. The survey specifically supports the association
of British neurologists’ recommendation for nationally agreed standards of
care. The second study, based on a postal survey of recent contacts (n=76) and in-depth
telephone interviews (n=22), demonstrates the society’s value as a service
provider and its role in helping to rehabilitate affected individuals and their
families. In responding to these findings, The Encephalitis Society is reminded
of the importance of maintaining credibility among its members as well as health
care providers. Developing strategies, on the basis of informed action and partnership
working with service champions, continues to inform the organisation’s sense
of purpose, as it responds to the changing context of welfare provision in the UK.
NEUROPSYCHOLOGICAL REHABILITATION 2007,17 (4/5), 638-647
Caregiver distress, coping and parenting styles in case of childhood encephalitis
Lucy Hooper1, W. Huw Williams1, Sarah, E, Wall1,
and Kia-Chong Chua2
1 Centre for Clinical Neuropsychology Research, School of Psychology,
University of Exeter, UK 2 Psychological Services Unit, Ministry of Community
Development, Youth and Sports, Singapore
This study presents an exploration of the impact of childhood encephalitis on parental
mood, Coping and disciplinary strategies. Thirty six parents of children aged between
10 and 17 years were recruited. They were split into groups of recent and remote
cases (within or beyond 7 years). Group comparison revealed that neurobehavioral
consequences of childhood encephalitis appear to persist over time. Higher levels
of behavioural symptoms consistent with dysexecutive disorder were associated with
greater parental distress. Parents remain distressed despite reporting proactive
profiles of coping. There was an indication that severity of dysexecutive disorder
was less use of proactive parental management strategies. Support for parents, in
particular focused on effective management of dysexecutive problems, is recommended.
NEUROPSYCHOLOGICAL REHABILITATION 2007,17 (4/5), 621-637