Journal of Applied Research in Intellectual Disabilities, 30(1), 2017, pp.1-32.
Publisher:
Wiley
Background: Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarises research on service responses to people with intellectual disabilities and epilepsy.
Method: Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted.
Conclusion: There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here.
(Publisher abstract)
Background: Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarises research on service responses to people with intellectual disabilities and epilepsy.
Method: Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes.
Results: Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted.
Conclusion: There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here.
(Publisher abstract)
Research on childhood epilepsy has predominantly used quantitative methodologies to examine the impact of epilepsy on young people and their families. These studies generally give a negative picture of the condition, which is at odds with a strengths-based social work perspective, and provide little understanding of young people's experiences of living with epilepsy. A systematic review of qualitative studies that explored young people's perspectives was conducted. Inclusion criteria were as follows: young people ages 13 to 18 years diagnosed with epilepsy, qualitative data collection methods, studies published in English-language peer-reviewed journals, and gray literature. Of 501 abstracts identified, 52 full-length texts were reviewed, with 17 studies being included for final analysis. The emergent themes were seizures and medications; relationships; issues and concerns involving their families, peers, and schools; and young people's reactions to epilepsy. It is essential to understand issues presented by young people for improving practice and developing services, as these issues highlight areas for potential social work interventions. It is also essential to adopt a strengths perspective
(Publisher abstract)
Research on childhood epilepsy has predominantly used quantitative methodologies to examine the impact of epilepsy on young people and their families. These studies generally give a negative picture of the condition, which is at odds with a strengths-based social work perspective, and provide little understanding of young people's experiences of living with epilepsy. A systematic review of qualitative studies that explored young people's perspectives was conducted. Inclusion criteria were as follows: young people ages 13 to 18 years diagnosed with epilepsy, qualitative data collection methods, studies published in English-language peer-reviewed journals, and gray literature. Of 501 abstracts identified, 52 full-length texts were reviewed, with 17 studies being included for final analysis. The emergent themes were seizures and medications; relationships; issues and concerns involving their families, peers, and schools; and young people's reactions to epilepsy. It is essential to understand issues presented by young people for improving practice and developing services, as these issues highlight areas for potential social work interventions. It is also essential to adopt a strengths perspective when considering these findings and implications for hospital social work, as young people's experiences were not always negative.
(Publisher abstract)
Subject terms:
literature reviews, young people, epilepsy, needs, social work, strengths-based approach, systematic reviews;