Intervening Early in Eating Disorders: What Prompts Parents to Act on their Concerns?

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1 Intervening Early in Eating Disorders: What Prompts Parents to Act on their Concerns? Associate Professor Genevieve Pepin Deakin University Faculty of Health, School of Health and Social Development, Geelong, Australia Rachel King Senior Clinician / Occupational Therapist CEED, Melbourne, Australia rachel.king@mh.org.au

2 Early Intervention Early identification of eating disorders (EDs) and rapid access to treatment dramatically improves a young person s chance of recovery (le Grange & Lobe, 2007) Early warning signs of an eating disorder can be difficult to detect because: They may occur gradually (le Grange & Lobe, 2007; Nicholls & Yi, 2012) Can be mistaken for normal adolescent development (Nicholls & Yi, 2012) Parents are often be amongst the first people to note changes and suspect that something might be wrong for their child (Gilbert, Shaw & Notar, 2000; Nicholls & Yi, 2012; Pépin & King, 2013)

3 Early Intervention Following diagnosis of an eating disorder, parents have retrospectively reported there were pre-existing concerns, but they did not consider that these difficulties might have indicated a possible eating disorder (Gilbert, Shaw & Notar, 2000).

4 Research aims To describe the experience of families in the period immediately preceding the eating disorder diagnosis of their child. Identify frequently encountered warning signs of EDs for families, Identify how families seek help and information in the pre-diagnosis phase of eating disorders and; Identify what families perceive to be helpful strategies in the pre-diagnosis phase of EDs.

5 Methods Cross sectional online survey design Survey questions based on: The responses of a previous focus group on the topic (facilitated by CEED) Existing tools such as the Anorectic Behavioural Observation Scale (Vandereyken et al. 1992). 16 questions (quantitative and qualitative) Participants were parents of a person with an eating disorder Distributed through online EDs networks

6 Results 344 responses received 92 from Australia, 113 from New Zealand and the rest from predominantly the US, UK and Canada Also received responses from Singapore, Israel, Costa Rica, Germany, Indonesia, Pakistan and South Africa

7 Where parents first sought further information Where Internet Books Other (psychologist, school counsellor) Percentage 63.1% (n=217) 23.0% (n=79) 21.2% (n=73) Health Service Websites Community Helplines School resources Online providers 13.7% (n=47) 13.4% (n=46) 8.1% (n=28) 6.1% (n=21) 4.1% (n=14)

8 School Nurse 5.20% First point of contact Pharmacist CEED 0.60% 1.20%Headspace 0.60% Other, 0.30% Pediatrician 22.40% Friends 10.50% Family 9.60% Psychologist 27.90% Other Medical Specialist 10.50% Dietitian 14.50% School Counsellor 13.10% GP 67.20% GP School Counsellor School Nurse Dietitian Psychologist Family Friends Pediatrician Other Medical Specialist Pharmacist headspace CEED Other

9 Most common warning signs Observed Sign Responses Percentage Weight significantly changed % Increased anxiety % Increased social isolation % Avoided eating with other/delayed coming % to the dinner table Did a lot of physical exercise or sport % Increased irritability % Became increasingly "healthy" % Preferred diet products (with low calorie % content) Seldom mentioned being hungry % Complained of physical symptoms (e.g. dizziness, cold, stomach pain) %

10 Most common warning signs Anorexia Nervosa (n= 255) Bulimia Nervosa (n=19) Saying there was too much food Bargaining about food Picking / slow eating Seldom Hungry Cooking and in Kitchen Watching cooking shows Perfectionism Physical symptoms Vomiting Hoarding Eating alone / in secret Large amounts Nb: Some participants listed multiple diagnoses so were excluded

11 What did participants say? What would have helped? Take us seriously! General Practitioners who know about EDs Eating disorder education Knowledge about EDs Knowledge about the increased prevalence of EDs in younger children and vulnerability, What signs to watch for What to say, how to handle the situation Provide reassurance to families Support and educate families We ve had to lie about our address to make sure she would get treatment We were told she was not sick enough. Professionals didn t know what to do. It is the loneliest journey for victim and carer. It affects your whole life The carers need more guidance, education and support to help their child through it

12 What did participants say? How did you feel PRIOR to diagnosis?

13 Knowing what you know now, what would you have done differently? Trusted my instinct, something WAS wrong Get help much sooner Talked openly about body image Be much more assertive with professionals and ask for 2 nd and 3 rd options for my child Attended a carers workshop to help me Be better informed to push back when told everything was OK and she/he wasn t sick enough Know about and use the different resources out there

14 Feed Your Instinct

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16 Conclusion Understanding families experiences prior to diagnosis of an eating disorder is highly valuable as it can: Enhance our understanding of the pre-diagnosis phase of EDs Inform the development of future early intervention programs Assist in improving education materials (which in turn can increase mental health literacy in the area) Inform the way early support is provided to families in the future.