Title:
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Young people living with epilepsy in Singapore : psychosocial adaptation and self-esteem: a mixed-methods study with implications for social work practice
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Social work practice in hospitals involve supporting young people and their families to cope
successfully with demands arising from living with a chronic medical condition such as
epilepsy. Epilepsy is a common neurological disorder in young people characterised by its
episodic and chronic nature; studies have. showed that young people tend to have poorer
psychosocial outcomes compared to healthy peers. However, there are several limitations in
current literature regarding young people's experiences of epilepsy. This includes the .
exclusion of young people's perspectives in quantitative and qualitative studies, an extensive
focus on pathology marked by an absence of a strengths perspective, the lack of studies
examining a combination of individual and family factors that facilitate positive adaptation,
and a majority of studies conducted in the West. In order to develop social work
interventions relevant to the needs of young people with epilepsy in Singapore, further
research is necessary.
Aim
The aim of this study was to examine young people's perspectives on living with epilepsy.
Together with individual and family factors influencing self-esteem, meanings young people
ascribed to their experiences were explored within the context of stress, coping and
resilience.
Methods
The rationale for using a mixed-method approach was to provide a comprehensive
understanding of young people's experiences by expanding the breadth of inquiry. In the first
strand of this explanatory sequential design, survey data was collected from 152 young
people at a neurology clinic within KK Women's and Children's Hospital, Singapore (KKH) to
examine the relationship between illness severity and self-esteem. Additionally, the effects of
potential mediators - perceived stress, negative illness perception, coping and family
resilience - were investigated. The second strand was conducted as a follow up to gain a
deeper understanding of young people's experiences and to illustrate quantitative results.
Semi-structured interviews conducted with 15 young people explored aspects of their
experiences of living with epilepsy.
Results
Except for young people's coping behaviours, three variables - perceived stress, negative
illness perceptions, and family resilience - were found to be significant mediators. Results
demonstrated perceived stress and negative illness perceptions mediated the relationship
between illness severity and young people's self-esteem. However, family resilience was a
significant mediator only for young people who continued to have seizures despite
medication.
Findings from young people's interviews provided in-depth descriptions of stressful
circumstances encountered, health and illness beliefs, and family processes.
Interconnectedness between illness severity and its impact on key developmental tasks,
such as independence, autonomy, and social development, were emphasised. Seizures and
illness-related demands disrupted their day-to-day functioning and challenged their abilities
to meet these tasks. Family processes that facilitated resilience included family
connectedness, beliefs and effective communication processes.
Conclusion
Integrated results from both quantitative and qualitative strands provided a more
comprehensive understanding of young people's experiences of living with epilepsy.
Although they experienced challenges arising from their illness, particularly when
medications were ineffective in preventing seizures, young people demonstrated resilience
and did not necessarily have low self-esteem. Taken together, young people's experiences
within the context of stress, coping and positive adaptation, emphasise the importance of
targeting individual and family variables when developing social work interventions to
support those in need.
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