Exploring the social inclusion of adults living with the effects of Foetal Alcohol Spectrum Disorders (FASD), with an aim to increase inclusion, and improve understanding as well as service provision.
Foetal Alcohol Spectrum Disorder (FASD) is a term used to describe a range of neurodevelopmental conditions and physical outcomes occurring as a result of prenatal alcohol exposure in the womb, certain levels of which may cause neurological and physical harm to the unborn child (Mukherjee, 2015). The symptoms, associated health conditions and complexities of living with FASD, although recognised in a specialised context, remain poorly understood in education, health and social care and amongst the general public (Duquette and Orders, 2013; Knorr and McIntyre; 2016). Narratives of stigma and shame have been identified in previously research (Choate and Badry, 2019) and in media portrayals of FASD (Eguiagaray et al., 2016). Recently, internet memes referencing FASD have also been noted as offensive due to the use of the term as a derogatory slur (NOFAS, 2019).
In previous research, efforts had been made to address and challenge such prejudiced and deficit-focussed descriptors (Chatterley-Gonzalez, 2010; Duquette et al., 2006; Knorr and McIntyre, 2016). However, studies exploring lived experiences of adulthood FASD suggest social isolation and stigmatisation still exert a powerful influence upon the individual, leading to low self-esteem and feelings of chronic loneliness (Salmon and Buetow, 2012). Children and adults diagnosed with FASD have described feeling different and isolated (Stade et al., 2011), experiencing enacted stigma apportioned to the biological mother (Bell et al., 2016), and having increased susceptibility to suicidality and impaired mental health (Duquette et al., 2006; Rangmar et al., 2017). Previous literature has focussed on experiences of children diagnosed with FASD and their caregivers (Domeij et al., 2018), however, research directly involving adults remains limited (Burles et al., 2018). To date, no current research into the experiences of adults living with FASD in the UK has yet been published (Domeij et al., 2018).
This project aims to address this gap in the evidence base and is funded by BCU via the Graduate Research Teaching Assistant (GRTA) PhD programme.
Are you an adult diagnosed with FASD?
This study would really benefit from hearing about your experiences. For further information, please read the participant information sheet.
This research project aims to explore the social inclusion and identity of adults living with FASD in the UK. It is important to identify ways in which these can be promoted as they are constructs highly associated with positive health outcomes (Abrams et al., 2005). By increasing professional and lay understanding and offering recommendations for service provision, outcomes may be improved for all those living with FASD. Additionally, an innovative integrative theoretical framework is proposed for the study, which in itself offers a novel contribution to qualitative research methodology.
A purposive sampling technique will be used to recruit adults with FASD from online communities including internet support groups and networks. It is anticipated that this initial approach may subsequently lead to snowball sampling as information about the project is disseminated via social media and word of mouth. Before assessing capacity to consent, individuals will be sent an information sheet via email, post or secure online survey software, outlining details of the study in an accessible manner.
Semi-structured interviews will be carried out with participants via telephone and written word, depending on communication preferences of the individual. The use of online written interviewing for participants with additional communication needs has been encouraged as it extends opportunities for participation and can generate rich data (Neville, Adams & Cook, 2016). Prospective participants will be also invited to contribute suggestions on how the research process can be made accessible and inclusive for them; this will be via forums on social media used as peer support networks. Accessibility and communication preferences can also be explored during the pre-screening consent process.
It is imperative that further research is undertaken to improve understanding, service provision and inclusion for adults living with FASD. This study aims to make a valuable contribution to towards the realisation of these ideals by directly involving adults with lived experience of FASD.