Exploring the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders (FASD) are a range of resultant conditions of prenatal exposure to alcohol, and the leading non-genetic cause of disability in the Western world (British Medical Association, 2016). This means that unlike genetic conditions FASD is entirely preventable. There are 428 co-occurring conditions associated with FASD including Autism and Attention Deficit Hyperactivity Disorder. We do not have an accurate estimate of the prevalence of FASD in the UK (although emerging studies suggest a prevalence of 3 – 6 %). However, any estimate is likely to be an undercount due to diagnostic challenges related to a lack of professional expertise, a poor referral system, an absence of diagnostic services, and/or the stigma related to a diagnosis. Although diagnosis is accompanied by a degree of stigma for children and their families, the argument for diagnosis can be made on the following grounds:
- Diagnosis is important for children and young people as it gives them identity and enables them to understand their own difficulties in daily life;
- Diagnosis of the primary condition helps to reduce the likelihood of secondary disabilities such as poor mental health;
- Diagnosis may lead to more accurately targeted and effective support as often children with FASD are either undiagnosed or diagnosed with an alternative condition such as Autism, Attention Deficit Hyperactivity Disorder (ADHD) or both of these. Whilst interventions targeted at alternative or co-existing conditions may be partially effective, if they do not work, educators will not have the neuroscientific understanding to adapt pedagogy based on a full and accurate diagnosis;
- Recent research shows that when children are diagnosed and parents educated about neurodevelopmental outcomes, they implement preventative strategies rather than punitive measure to manage difficult behaviour. This improves family relationships;
- Diagnosis may lead to improved community and societal understanding of the condition;
- Diagnosis helps to raise awareness about the risks of PAE. Clearly in the longer term, this has the potential to reduce the number of children born with FASD.
This project aims to explore the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders.
Efforts to improve diagnosis and support for FASD have inadvertently stigmatized this life-long condition, marginalizing individuals, families and communities impacted by FASD, and leading to many forms of discrimination. The consequences of stigmatisation are the unfair treatment of people who use alcohol in pregnancy and people with FASD. Misunderstandings of the contributing factors to this disability further compound the problem. However, anecdotally, many adults with FASD and parents of children with FASD recognise diagnosis as a turning point in terms of understanding themselves/their child and a pathway to tolerance and empathy from others. The identity of adults diagnosed with FASD is an under-researched area and may help to further knowledge about the benefits / disadvantages to a diagnosis throughout life. Research questions include
- What are the perceived benefits of a diagnosis of FASD across the lifespan?
- What are the perceived disadvantages of a diagnosis of FASD across the lifespan?
- What do adults with FASD want professionals to know about the role of a diagnosis in helping / preventing them to understand themselves and participate in society?
Methods and theoretical Frameworks:
Using ecological systems theory and additions frameworks: theories of stigma, intersectionality, human-social dignity and human rights a qualitative interpretive approach, to interviews with adults diagnosed with FASD will enable a thematic analysis. These themes will be used to design an international online survey. The findings from these would be triangulated with a review of literature and policy analysis
The project team includes Dr. Carolyn Blackburn, Senior Research Fellow and Dr. Barbara Howard-Hunt, Senior Lecturer/Researcher from the Faculty of Health, Education and Life Sciences, Birmingham City University.
The project has received seed funding from Birmingham City University
The project is supported by NOFAS-UK and The National FASD Advisory Committee, an adult steering group advising NOFAS-UK’s transitions to adulthood project. Dr. Raja Mukherjee Consultant Psychiatrist Surrey and Borders Partnership NHS Foundation Trust will act as an external advisor to the project.
Promoting children’s well-being, right to make choices and engage in playful activities in restricted environments through music and singing
The Singing Medicine service is an award-winning project (Outstanding contribution to the field of arts and health, Royal Society for Public Health 2011) that is delivered weekly to wards at Birmingham Children’s Hospital. The Hospital has an on-site school which works within the framework of the Early Years Foundation Stage (and other legislative curriculum frameworks) and where the programme is offered to children who are well enough to attend school. The Singing Medicine service brings all the benefits of play through singing to children staying in hospital. In an environment where children can feel they have lost control over their lives adapted games offer children ways of making decisions. The games also support many other areas of personal and social development important in any child’s development such language and speech development, turn-taking, taking an individual responsibility, learning to lose, confidence. The programme aims to respond to children’s emotions providing either stimulation, or offer calm as required. On the Neonatal wards, Vocal Tutors (VTs) are often asked to sing to particularly distraught and crying babies in order to soothe them – sometimes even singing them to sleep.
The deeper breathing required by singing enables participants to reconnect with core muscles, and helps increase lung capacity. Singing activities often include some movement to increase physical mobility, and VTs are often approached by physiotherapists to work with a patient in a particular way in order to increase the development of particular muscles in conjunction with exercises they have set. Working in patient or family groups singing sessions relieve boredom, offer a distraction from the ward around them, and reduce social isolation. Singing with others promotes human bonding and oxytocin, supporting children’s relationships with caregivers. This in turn can lead to an increase in wellbeing in a situation where psychological deterioration can lead to deterioration in health.
This study is funded by the Froebel Trust and aims to describe and analyse the views and perceptions of parents and professionals who care for and support children who participate in the Singing Medicine service. A further aim would be to understand how the application of Frobelian principles can help us to understand and conceptualise children’s rights and well-being in the context of their family and community in restricted environments such as a Children’s Hospital.
Interviews with parents and clinical professionals will be followed by a Focus Group Meeting of Vocal Tutors to map the findings against Frobelian Principles of children’s right to play and creativity in restricted environments.
Born early: early care and education experiences of young children born prematurely
Dr. Carolyn Blackburn and Dr. Merryl Harvey (supported by BLISS http://www.bliss.org.uk/)Supporting children born prematurely
Each year in England, around 10,000 children are born very preterm (at less than 32 weeks gestation) and a further 60,000 are born moderately preterm (at 32-36 weeks gestation). The number of preterm births has increased in the last two decades, and more preterm children are surviving due to improved neonatal care (National Neonatal Audit Programme, 2015). However, the prevalence of cognitive, behavioural and emotional problems in preterm populations has not changed. In particular, children born preterm have been found to experience specific learning problems including difficulties with mathematics, visual-spatial skills, memory and attention.
There is still much we do not know about the nature and spectrum of these learning difficulties, their long term consequences, and how to deal with them. In particular, there is controversy about whether moderately preterm children experience similar but milder learning problems than children born very preterm. Teachers and educational psychologists receive little formal training about preterm birth and are often not aware of appropriate strategies to support preterm children in the classroom. Informing teachers about the special constellation of problems following preterm birth is crucial in preparing them to support the growing number of preterms entering schools in the coming years (Campbell, 2015; Carpenter et al., 2015).
Studies have explored parents’ experiences of having a child born prematurely. However, these studies have generally focused on the months immediately following the birth and have taken a health and social care perspective (Harvey el al, 2013; Garfield et al, 2014; Gray et al, 2013). Quantitative studies have also examined the development of children who were born prematurely and have identified the learning difficulties that they face during early childhood (Marlow, 2004; Johnson et al, 2010; Costeloe 2012). Parents’ experiences of early years education is an under-researched area.
The benefits of early care and education early intervention (EI) have been well documented in policy and research in terms of improving outcomes for children at risk of or identified with SEN. Whilst not all children born prematurely will be identified with Special Educational Needs, ongoing monitoring of their learning and development (as is evident from Carolyn’s work at the Champion Centre, NZ) has the potential to ameliorate any future delays or difficulties.
.This study aims to explore the early care and education experiences of children born prematurely through reports from parents in order to identify best practice in early care and education and provide advice and guidance for policy-makers and early educators. Research questions include:
- What are the early social experiences of young children born prematurely (as reported by parents)?
- What are parents’ memories of their children’s developmental milestones?
- Where children are attending early years settings, what are parents experiences of this, were there any difficulties/problems in finding suitable childcare provision?
- What advice/support do early years workers need to support children born prematurely and their families?
The first phase of the research will be a family survey. More details to follow.
Campbell, D. Premature babies more likely to end up in lower- paid jobs. The Guardian 1st September 2015
Carpenter, B., Egerton, J. Cockbill, B., Brooks, C., Fotheringham, J., Rawson, H. And Thisthtlethwaite, J. Engaging learning with complex learning difficulties and disabilities. London: Routledge
Costeloe KL, Hennessy EM, Haider S, Stacey F, Marlow N, Draper ES. Short term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 and 2006 (the EPICure studies). BMJ, 2012;345:e7976
Garfield CF, Lee Y, Kim HN (2014) Paternal and maternal concerns for their very low-birth-weight infants transitioning from NICU to home. Journal of Perinatal and Neonatal Nursing; 28 4 305-312
Gray PH, Edwards DM, O’Callaghan MJ, Cuskelly M, Gibbons K. (2013) Parenting stress in mothers of very preterm infants – influence of development, temperament and maternal depression. Early Human Development; 89 9 6250629
Harvey, M.E. Nongena, P. Gonzalez-Cinca, N. Edwards, A.D. and Redshaw, M.E. (2013) Parents’ experiences of information and communication in the neonatal unit about brain imaging and neurological prognosis: a qualitative study, Acta Paediatrica, 102(4): 360-365.
Johnson S, Hollis C, Kochhar P, Hennessy EM, Wolke D, Marlow N. Autism spectrum disorders in extremely preterm children. J Pediatrics2010;156:525-31
Marlow N. Neurocognitive outcome after very preterm birth. Arch Dis Child Fetal Neonatal Ed 2004;89:F224-8
National Neonatal Audit Programme (2015) Annual Report on 2014 data. http://www.rcpch.ac.uk/improving-child-health/qualityimprovement-and-clinical-audit/national-neonatal-audit-programme-nnap (accessed 11/04/2016)
Relationship-based Early Intervention Services: lessons from NZ
Early Intervention (EI) has the potential to improve children’s long term outcomes socially, emotionally and educationally as noted by recent English policy reports. However, there is a paucity of specialist EI services and educator training for children with complex disabilities, such as those with Foetal Alcohol Spectrum Disorders or children born extremely prematurely (Carpenter et al., 2011).
The Champion Centre provides relationship-based EI services to infants and young children with complex disabilities. Parents and children visit the Centre each week and have one-on-one individualised sessions with each of the members of a multi-disciplinary team. Children who attend the Champion Centre in their early years are more likely to subsequently attend mainstream primary education than children who have not received comparable EI services. I travelled to NZ to work with the Champion Centre and I also worked with Positive Path International during my visit http://www.positivepath.co.nz/ in a project that explored what can be learned from NZ and related to a UK context. The project was funded by a Travelling Fellowship from Winston Churchill Memorial Trust http://www.wcmt.org.uk/. The findings from the Fellowship can be found here http://www.wcmt.org.uk/users/carolynblackburn2015
Independent Evaluation of a Fostering Helpline
Foster carers are motivated to foster by intrinsic and altruistic drivers such as a desire to improve children’s well-being and long-term outcomes as well as more practical drivers related to their own accommodation and financial resources. Some are motivated by personal life experiences and prior professional experiences.
Key findings are that foster carers’ aspirations for children are concerned with children’s immediate social and emotional development as well as the influence of this on their future social inclusion, employment and family prospects. The main challenges reported by foster carers in their fostering role related to communication and relationships with Local Authorities, Independent Fostering Associations and social workers as well as the communication between professionals within these organisations.
Fosterline’s role in the recruitment and retention of foster carers as reported by participants in this evaluation is to provide impartial and independent advice about a range of sensitive concerns and issues when foster carers feel they have no-one else to turn to. Sometimes when foster carers contact Fosterline they are at crisis point in terms of their fostering career and their emotional resilience to cope with the situation. Fosterline responds by listening, encouraging, empowering and valuing foster carers’ perspectives and concerns in a way that enables them to act on the advice and support given.
Implications for policy and professional practice are discussed within the evaluation. Foster carers are calling for a ‘new deal’ in terms of working conditions and more effective communication between professionals, as well as a change in attitudes by professionals towards foster carers and children. A team around the foster carer approach is suggested within the evaluation as a way of working with foster carers in a more collaborative and respectful manner. The report and executive summary can be found on the Fosterline website.
Research has shown that a developing foetus can discriminate sounds in the womb from 22 weeks gestation and that early sound discrimination helps to promote later phonic and vocabulary development. In addition, during early social interaction between caregivers and infants there are noticeable patterns of timing, pulse, voice timbre, and gesture that follow many of the rules of musical performance, including rhythm and timing conceptualised by Malloch and Trevarthen (2009) as ‘communicative musicality’. Given the centrality of communication in children’s learning and development (Blackburn, 2014) and the established links between human communication and music, this project seeks to explore the views, understanding and reported practices of interested stakeholders in young children’s musical interactions in home and out-of-home early years settings.