Development of the BEFG-ASD- Supporting professionals and parents of

children with ASD

Noor Safiza Mohamad Nor PhD student /Paediatric Dietitian

Institute of Health and SocietyNewcastle University

DASLNE Conference 23rd May 2012

Institute for Public Health, National Institutes of HealthMinistry of Health Malaysia

Why identify feeding problems and GI symptoms ?

• Problems may be similar to typically developing children but more frequent, persistent and longstanding in children with ASD

• Contribute to psychosocial and financial impact for children and families

• Management of these problems likely to be challenging

• Professionals in the community needs to identify and clarify these issues in a systematic way, to engage discussion with parents

• No structured questionnaire addressing both problems and the impact –for professionals in the community ( health and education settings)

• To develop a Brief structured questionnaire for the Early identification of Feeding problems and Gastrointestinal(GI) symptoms in children with Autism Spectrum Disorders, and the impact of these problems (BEFG-ASD)

• Interview based questionnaire for use by a range of professionals in the community

An information pack was developed together with the BEFG-ASD

Aims of research

Methods

DEVELOPMENT OFBEFG-ASD

FIELD TESTING OF BEFG-ASD

EVALUATION OF BEFG-ASD

PHASE I

2009-2010

PHASE II

2010-2011

PHASE III

2011-2012

Involvement of experts:•Professionals•Parents

•Health professionals•Teachers/Teaching assistants•Community workers•Parents

•Reliability and validity analyses•Telephone interview with professionals

RESULTSSECTIONS AND QUESTIONS OF THE BEFG-ASD

AFEEDING PROBLEMS

Food selectivity Food sensitivity (physical food

characteristics) Food sensitivity (child’s food

environment) Problematic mealtime

behaviours Food neophobia Signs of pica Parental dietary practices

( 25 Questions)

BGI SYMPTOMS

Abdominal pain (not associated with constipation)

Diarrhoea Chronic constipation Toileting problems Frequent vomiting Weight issues

(9 Questions) use of Bristol Stool Chart

CIMPACT

• Impact of feeding problems• Impact of GI symptoms(parent’s life, stress, financial, family life)

(8 questions)- details of impact

Feeding Problems (N=73)Types Questions %

‘food neophobia’ • child reluctant to eat new food 82%

‘food selectivity’ • child refused to eat family food• child insisted similar food at most meals • child required specific food preparation

>50%

‘food sensitivity’(based on child’s food environment)

• child insists food served in particular way • child has problems with cutlery control

50%

‘food sensitivity’(based on physical characteristics)

• insisted food on particular textures, flavours and smells

>30%

‘signs of pica’ • eat, lick or chew non-food items (stationaries, bus stops, baby wipes, papers, play dough, hair, furniture and tyres)

>50%

‘regular problematic mealtime behaviours’ (at least once a week).

• disruptive behaviours (shouting, spitting and throwing foods)

• aggressive behaviours (kicking siblings, throwing cutleries to family members and scratching tables)

>30%

62 % parents did not receive professional advice on feeding problems or child’s diet

• Questionnaire development : mixed qualitative and quantitative approach

• Commitment from professionals and parents was impressiveProfessionals : 48Parents :74

• BEFG-ASD can be used by a range of professionals in the community to support children with ASD and their families

• Multidisciplinary team approach in managing feeding problems

Discussion and conclusion

THANK YOU FOR YOUR SUPPORT!!!