Research in developmental disabilities · 2016
A qualitative evaluation of caregivers' experiences, understanding and outcomes following diagnosis of FASD.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Chamberlain Katrina, Reid Natasha, Warner Judith, Shelton Doug, Dawe Sharon
Аннотация
INTRODUCTION: The effects of prenatal exposure to alcohol are wide-ranging and pervasive in nature. In response to growing concerns about the lifelong disabilities related to prenatal alcohol exposure, a fetal alcohol spectrum disorder (FASD) diagnostic clinic was established in 2012. This was the first multi-disciplinary service operating permanently within an Australian health service. The current study aimed to explore the lived experience of the diagnostic process for caregivers of children with FASD.
METHODS: Twelve caregivers were approached and ten participated in audiotaped interviews about caring for a child with FASD. Qualitative analysis was undertaken on transcribed interviews using NVivo 10 for thematic analysis.
RESULTS: The major themes that emerged were: a desire for future support for their child although uncertainty about how this support could be accessed; an understanding of FASD prior to assessment but a concerted concern that this condition was not recognised as a disability across educational and related settings; that a formal assessment process provided validation for caregiver concerns and that caregivers felt respected and understood by the clinical team during this process.
DISCUSSION: These findings highlight the concerns of caregivers, emphasising both the importance of diagnostic services and the need for provision of further support beyond diagnosis for a child with FASD. WHAT DOES THIS PAPER ADD?: This study provides information on the lived experiences of caregivers who attended the first multi-disciplinary FASD assessment and diagnostic service in Australia. This study provides valuable insight into the ongoing difficulties that families are experiencing following diagnosis in the current Australian context.
METHODS: Twelve caregivers were approached and ten participated in audiotaped interviews about caring for a child with FASD. Qualitative analysis was undertaken on transcribed interviews using NVivo 10 for thematic analysis.
RESULTS: The major themes that emerged were: a desire for future support for their child although uncertainty about how this support could be accessed; an understanding of FASD prior to assessment but a concerted concern that this condition was not recognised as a disability across educational and related settings; that a formal assessment process provided validation for caregiver concerns and that caregivers felt respected and understood by the clinical team during this process.
DISCUSSION: These findings highlight the concerns of caregivers, emphasising both the importance of diagnostic services and the need for provision of further support beyond diagnosis for a child with FASD. WHAT DOES THIS PAPER ADD?: This study provides information on the lived experiences of caregivers who attended the first multi-disciplinary FASD assessment and diagnostic service in Australia. This study provides valuable insight into the ongoing difficulties that families are experiencing following diagnosis in the current Australian context.