Reported service needs at diagnosis of epilepsy and implications for quality of life
Autor: | Christopher Peterson, Honor Coleman, Graeme Shears, Christine Walker |
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Rok vydání: | 2019 |
Předmět: |
Adult
Employment Male medicine.medical_specialty Adolescent Sample (statistics) Peer support Peer Group 03 medical and health sciences Behavioral Neuroscience Epilepsy Young Adult 0302 clinical medicine Quality of life Seizures Surveys and Questionnaires medicine Humans 030212 general & internal medicine Child Qualitative Research Aged Service (business) Aged 80 and over Health Services Needs and Demand Total quality management business.industry Age Factors Australia Infant Social Support Middle Aged medicine.disease Neurology Socioeconomic Factors Family medicine Child Preschool Quality of Life Anticonvulsants Female Neurology (clinical) business Psychosocial 030217 neurology & neurosurgery Qualitative research |
Zdroj: | Epilepsybehavior : EB. 100 |
ISSN: | 1525-5069 |
Popis: | Aim This paper reports on contributing factors to Quality of Life (QoL) in an Australian community sample of people with epilepsy (PWE). Method Three hundred and ninety-three respondents or 29.6% of people on the Australian Epilepsy Research Register participated in Wave 4 of a longitudinal survey. A quantitative analysis was undertaken and a qualitative investigation examined open-ended responses by 44 PWE on the support services that they received following diagnosis of epilepsy. Results Total Quality of Life in Epilepsy-31 Items (QOLIE-31) score for the community-based sample was 55.99 (SD 19.85) [Range 6.34–96.20]. Age, paid employment, seizure frequency, number of antiepileptic drugs (AEDs), and perceived prosperity had significant impacts on QoL. In addition, use of support services showed that availability of a first seizure clinic, accurate information on support services and peer support were associated with the highest QoL. A qualitative investigation revealed that on first diagnosis, a lack of information was the main theme. Furthermore, PWE reported a lack of understanding of available supports by a range of health professionals, schools, and in the general community. Discussion Psychosocial factors were important in explaining QoL, and the positive effects of first seizure clinics, accurate information on support services, and of peer support have been confirmed in the literature. The lack of knowledge of support services on being diagnosed with epilepsy is a problem evident in the community and pathways are required to support people dealing with their epilepsy. Conclusion More emphasis is needed in providing availability of supports to enhance the future wellbeing and QoL of people when epilepsy is diagnosed. |
Databáze: | OpenAIRE |
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