A discussion about obesity and children & young people with a learning disability - thesis summary
Abbreviated thesis summary: Policies (e.g. SIGN, 2010; NICE, 2006) recommend researching causes of childhood obesity, and developing effective interventions for Children and Young people with a Learning Disability (CYPLD).
Literature suggests that globally, there is a higher prevalence of obesity, overweight and underweight amongst CYPLD compared to typically developing children. Physical and emotional health consequences are worse for this population, due to already higher unmet need in this population. Despite evidence of additional need, less evidence-based weight management interventions exist for this population.
My recent systematic review looked at the effectiveness of diet and exercise obesity interventions in promoting optimal weight amongst CYPLD. This area has not been well researched to date, with few studies, and inadequate methods used, and therefore it was difficult to draw firm conclusions about what works. However, it seems that using diet and exercise combined, involving families and schools, and adapting approaches to meet the needs of CYPLD, are all helpful.
Given the importance of involving parents in improving child diet, my recent research study tried to identify specific factors which predict parental encouragement of a healthy diet for their child with a learning disability. Results showed there was no evidence it would be useful for interventions to focus on parental attitude about diet, parent's beliefs about what others think, parent's perceived barriers that might prevent encouragement of a healthy diet, and parent's belief in being able to manage child weight-related behaviours well.
My research also showed there was a clinical need to address weight amongst this population of both children and their parents, and that interventions should take into account higher rates of mobility problems (which may affect exercise interventions), special diets (which may affect dietary interventions), clinically significant challenging behaviours relating to weight, and parents with clinically significant low self-efficacy in managing these behaviours.
By Fiona Gellatly (Specialist Clinical Psychologist Practitioner and Doctoral Researcher, University of Edinburgh). Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.
Thesis Summary in full
By Fiona Gellatly (Specialist Clinical Psychologist Practitioner and Doctoral Researcher, University of Edinburgh; and Dr Catriona Moffat, Chartered Clinical Psychologist, PPALS, RHSC, Edinburgh.
Children and Young people with a Learning Disability (CYPLD)
The Scottish Intercollegiate Guidelines Network 'Management of Obesity' guidelines (SIGN 115, 2010) recommend researching influential factors in the development of childhood obesity; and both SIGN and NICE (2006) recommend researching and developing effective interventions for managing obesity amongst people with a learning disability (IQ below 70, occurring before age 18, accompanied by impaired daily living skills; BPS, 2000). The World Health Organisation (2010, 2012) also states that the inclusion of obesity management interventions for children and young people with a learning disability (CYPLD) should form part of national policies.
Globally, there is a higher prevalence of obesity, overweight and underweight amongst CYPLD compared to typically developing children. The health consequences related to weight have a further impact on the learning disability population due to already higher rates of unmet health needs (NHS Health Scotland, 2004). For CYPLD who are obese, symptoms may be in excess of those experienced by typically developing children, such as increased fatigue, pain, social isolation (Rimmer et al. 2010), difficulty for parents in managing personal care (De et al. 2008), and increased bullying or isolation due to both LD and obesity, the latter being termed a 'double stigma' (Slevin et al. 2012). Despite the additional need, less evidence-based weight management interventions exist for the LD population. CYPLD may have a higher risk of obesity if they are older (Maiano, 2011), have reduced mobility (Bandini et al. 2005), have challenging behaviour related to eating, or are over-fed in an attempt to reduce boredom, loneliness and problem behaviours (Melville et al. 2007).
A recent systematic review (Gellatly, 2013a) looking at the effectiveness of non-medical diet and exercise obesity interventions in promoting optimal weight amongst CYPLD, found little research. Available studies reported that interventions were effective in the short-term. However, interventions were typically of insufficient duration, and lacked follow-up measures, which would be required to demonstrate longer term effectiveness. Clinical recommendations (SIGN, 2010; NICE, 2006) to use Child BMI or valid and reliable lifestyle measures were typically not followed, and child weight loss was often the goal of treatment, when maintenance may have been more appropriate given the need for growth. Methodologically, there was a lack of well carried out randomised controlled studies, and insufficient sample sizes. Ethically, unintended harm was not typically reported, and healthy and underweight participants were recruited in some studies, when weight loss was intended. The review concluded that there is insufficient evidence to confidently state which interventions will be effective for managing weight amongst CYPLD. However, based on best available evidence, the following can be recommended clinically amongst CYPLD: multi-component approaches (including both diet and exercise), systemic (involving family and school in treatment), with adaptations made to recommended approaches for typically developing children (SIGN, 2010; NICE, 2006), so that interventions become suitable for CYPLD.
A recent study (Gellatly, 2013b) has examined potential predictors of parents' intentions and behaviours, in encouraging a healthy diet for children with a learning disability, using a revised Theory of Planned Behaviour (TPB) model, which additionally includes self-efficacy (the belief of being capable of performing well, Bandura, 1977). This study was carried out in response to research recommendations as described above (SIGN, 2010; NICE, 2006). Addressing diet is reported as a priority in reducing mortality as a result of childhood non-communicable diseases (WHO, 2013). Clinical guidelines recommend parental involvement as well as the importance of diet in weight management interventions (NICE, 2010; SIGN, 2006). Parents are known to influence diet amongst typically developing children and young people via genetics, modelling, feeding behaviours, (Skouteris et al. 2011), and noticing and prioritising weight (Scottish Government, 2012). A literature review about obesity in CYPLD recommended that future research explore diet and the role of the parent (Maiano, 2011); and diet is known to be less healthy amongst CYPLD (Slevin et al. 2012). CYPLD rely more on their parents to provide a healthy diet (Hamilton et al. 2007), and to support informed choice if the long-term consequences of diet choices are not understood (Smyth et al. 2006). The literature suggests that parents of CYPLD may find themselves using food as a reward or behavioural reinforcement, and as compensation for their child having a LD (Markella, 2011). The additional guilt, stresses and demands placed on parents of CYPLD may mean that preparation of healthy meals to manage their child's weight is not prioritised (Bandini et al. 2005). Another systematic review demonstrated the importance of parental perceptions, attitudes and behaviours in influencing diet in CYPID (Mcgillivray et al. 2013).
The results from this study (Gellatly, 2013b) suggest that there is no evidence that non-medical obesity interventions for CYPLD should focus on addressing TPB variables of parental attitude about diet, subjective norm (parent's beliefs about what others think), perceived behavioural control (parent's perceived barriers that might prevent encouragement of a healthy diet), or the present additional self-efficacy (parent's belief in being able to manage child weight-related behaviours well) variable. However, previous research has shown that parents lacking self-efficacy, in terms of managing their child's weight-related challenging behaviours, were more likely to have an obese child (West et al. 2009). There was evidence of a clinical need to address weight amongst CYPLD (more likely to be obese and overweight, as well as underweight, compared to typically developing peers), and their parents (more likely to be overweight and obese compared to the general adult population). The authors recommend that future non-medical weight management interventions for CYPLD should take into account the following population characteristics identified during this research: higher rates of mobility problems (which may affect exercise interventions), special diets (which may affect dietary interventions), clinically significant challenging behaviours relating to weight, and parents with clinically significant low self-efficacy in managing these behaviours.
In conclusion, non-medical management of obesity in CYPLD is under-researched. The present research highlights the need for CYPLD appropriate measurement tools to be developed, and for future research to identify alternative factors that do influence parent's intentions and behaviours, in encouraging healthy eating amongst CYPLD. Future research should focus on evaluating the effectiveness of non-medical weight interventions for CYPLD using well designed studies, including when CYPLD are treated amongst typically developing groups, and considering their transition from child to adult services.
References:
Bandini, L. G., Curtin, C., Hamad, C., Tybor, D. J., & Must, A. (2005). Prevalence of overweight in children with developmental disorders in the continuous national health and nutrition examination survey (NHANES) 1999-2002. Journal of Pediatrics, 146 (6): 738-743.
British Psychological Society (BPS), (2000). Learning Disabilities: Definitions and contexts. Leicester: British Psychological Society.
De S., Small J. & Baur L. A. (2008). Overweight and obesity among children with developmental disabilities. Journal of Intellectual and Developmental Disabilities, 33, 43-7.
Gellatly, F., Newman, E., McKenzie, K., Downie, H., Kidd, G. (2013a). Non-medical obesity interventions for Children and Young People with Intellectual Disabilities. Doctorate in Clinical Psychology Systematic Review for thesis (submitted for publication).
Gellatly, F., Newman, E., McKenzie, K., Downie, H., Kidd, G., Ferreira, N. (2013b) Parent's intentions to provide a healthy diet for children with a learning disability: The application of a revised Theory of Planned Behaviour. Doctorate in Clinical Psychology Empirical Research for thesis (submitted for publication).
Hamilton, S., Hankey, C. R., Miller, S., Boyle, S. & Melville, C. A. (2007). A review of weight loss interventions for adults with intellectual disabilities. Obesity Reviews, 8 (4): 339-345.
Maïano, C. (2011). Prevalence and risk factors of overweight and obesity among children and adolescents with intellectual disabilities. Obesity Reviews, 12 (3), 189-197.
Markella, S. (2011). Audit of the Outcomes for Children with Special Needs Attending a Childhood Weight Management Programme. Unpublished master's thesis, MSc course in Human Nutrition, University of Glasgow.
Mcgillivray J, Mcvilly K, Skouteris H, Boganin C. (2013). Parental factors associated with obesity in children with disability: A systematic review. Obesity Reviews, 14, 541- 554.
Melville, C.A., Hamilton, S., Hankey, C.R., Miller, S. & Boyle, S. (2007). The prevalence and determinants of obesity in adults with intellectual disabilities. Obesity Reviews, 8 (3): 223-230.
NHS Health Scotland (2004). People with Learning Disabilities in Scotland: Health Needs Assessment Report Summary. Glasgow: NHS Health Scotland.
NICE National Institute for Health and Clinical Excellence (NICE) (2006). Obesity: Guidance on prevention, identification, assessment and management of overweight and obesity in adults and children. NICE Clinical Guideline 43. Accessed 1st January 2013 from:
www.nice.org.uk/nicemedia/pdf/CG43NICEGuideline.pdf
Rimmer, J. H., Yamaki, K., Davis Lowry, B. M., Wang, E. & Voge, L. C. (2010). Obesity and obesity-related secondary conditions in adolescents with intellectual/ developmental disabilities. Journal of Intellectual Disability Research, 54, 787–94.
Scottish Government, (2012). Growing up in Scotland obesity policy. Accessed 1st January 2013:
www.scotland.gov.uk/Resource/0039/00392688.pdf
SIGN Scottish Intercollegiate Guidelines Network (SIGN). Management Guideline 115: Management of Obesity. Accessed January 1st 2013:
www.sign.ac.uk/guidelines/fulltext/115/index.html
Skouteris, H., McCabe, M., Swinburn, B., Newgreen, V., Sacher, P. & Chadwick, P. (2011) Parental influence and obesity prevention in pre-schoolers: a systematic review of interventions. Obesity Reviews 12 (5): 315-328.
Slevin, E., Truesdale-Kennedy, M., Mcconkey, R., Livingstone, B., & Fleming, P. (2012). Obesity and overweight in intellectual and non-intellectually disabled children. Journal of Intellectual Disability Research.
Smyth, C. M. & Bell, D. (2006). From biscuits to boyfriends: The ramifications of choice for people with learning disabilities. British Journal of Learning Disabilities, 34 (4): 227-236.
West, F. & Sanders, M.R. (2009). The Lifestyle Behaviour Checklist: A measure of weight-related problem behaviour in obese children. International Journal of Pediatric Obesity, 4 (4): 266-273.
World Health Organisation (2010). Population-based prevention strategies for childhood obesity: report of a WHO forum and technical meeting, Geneva, 15–17 December 2009. World Health Organisation. Accessed 20th July 2013:
www.who.int/dietphysicalactivity/childhood/child-obesity-eng.pdf
World Health Organisation (WHO) (2012). Population based approaches to childhood obesity prevention. Geneva, World Health Organization, 2012.
The World Health Organisation (WHO) (2013). Action plan for the global strategy for the prevention and control of noncommunicable diseases. Geneva, World Health Organization, 2013. Accessed 20th July 2013:
www.who.int/dietphysicalactivity/childhood/child-obesityeng.pdf
