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Pica Among Persons with Intellectual Disability: Prevalence, Correlates, and Interventions

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Pica Among Persons with Intellectual Disability: Prevalence, Correlates, and Interventions Pica among Persons with Intellectual Disability: Prevalence, Correlates, and Interventions by Melody Ashworth A thesis presented to the University of Waterloo in fulfillment of the thesis requirement for the degree of Master of Science in Health Studies and Gerontology Waterloo, Ontario, Canada, 2006 ©Melody Ashworth 2006 AUTHOR’S DECLARATION I hereby declare that I am the sole author of this thesis. This is a true copy of the thesis, including any required final revisions, as accepted by my examiners. I understand that my thesis may be made electronically available to the public. ii ABSTRACT Background: Individuals with intellectual disabilities (ID) have a higher prevalence of comorbid psychiatric disorders and challenging behaviours compared to the general population. Though less common, one area of concern among those with ID is pica (the ingestion of inedible substances). To date, there is little knowledge of pica, particularly with respect to its risk factors and social consequences. The closure of Ontario’s three remaining facilities by 2009 underscores the importance of having knowledge of complex behaviours such as pica for improving supports and services in the community for these individuals. The aim of this study is to better understand the characteristics and support needs of adults with ID and pica. This study is comprised of a quantitative and qualitative component. Quantitative Study Objectives: To investigate the prevalence, risk factors, social and medical characteristics of pica. To determine how pica is managed in terms of hours of supervision, receipt of interventions, and psychotropic medication. Methods: Secondary data analysis was performed on two samples as part of cross-sectional study: 1008 persons with ID from Ontario’s facilities and 420 community-dwelling adults with ID from southwestern Ontario. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID)—a comprehensive and standardized instrument that measures a variety of domains for support planning. Bivariate and multivariate analyses were restricted to the facility sample due to the small size of persons with pica in the community. Results: The overall prevalence of pica was 22.0% and 3.3% in the facilities and the community, respectively. Logistic regression analysis showed that being male, cognitive functioning, autism, and being non-verbal were associated with a higher odds of having pica, iii whereas activities of daily living (ADL) was a protective factor. A quadratic relationship was observed between cognitive function and pica: the risk of pica increased with severity of cognitive impairment up to moderate to severe levels of impairment and then diminished among those with very severe cognitive impairment. Behaviour management, self-care skills, and 8 hours or more of one-to-one supervision were more likely to be provided to persons with pica. Compared to persons without pica, persons with pica had higher rates of being prescribed antipsychotic medication. Surprisingly, pica was not associated with higher rates of gastrointestinal health problems, with the exception of acid reflux. The negative social outcomes of pica, however, were many: pica was associated with higher odds of not having a strong and supportive relationship with family, lack of contact with family or other close relations, and absence of participation in social and recreational activities. Qualitative Study Objective: To determine the support needs of adults with ID and pica from the perspective of direct-care staff of facility and community settings. Methods: Through two focus groups, the perspectives of four staff from Huronia Regional Centre (HRC), and six staff from community agencies from southwestern Ontario were examined. Transcripts were analyzed thematically for factors that facilitated or hindered the management of pica. Results: Qualitative data revealed three categories that underpinned reduction in pica: preventative measures (environmental controls, close supervision, and the provision of alternative activities), formal supports, and familiarity with the individual. On the other hand, inadequate staff support, lower functioning level of the individual, and lack of knowledge iv acted as barriers to managing and reducing pica. These barriers were associated with persons participating in fewer recreational activities and community outings, and in some cases the use of mechanical restraints. Barriers specific to each setting in the management of pica were also illuminated. Staff in both settings tended to be self-sufficient and isolated in managing this complex behaviour. Conclusions: Results suggest that attention should be equally paid to the potential social consequences of pica rather than solely to its health risks. Higher staff to client ratios, and training and education for staff to provide more active support to promote individuals’ engagement in recreational activity and community integration is needed. Key recommendations also focus on educating and training staff on the risk factors and appropriate management of pica. Improving the collaboration and knowledge exchange among developmental service agencies is also recommended to enhance the management of pica among caregivers. Lastly, the community at large needs education on pica to foster more inclusive community living for those with ID. v ACKNOWLEDGEMENTS I wish to formally thank my supervisor, Dr. John Hirdes, for his guidance in this research process and for supporting my interest in intellectual disabilities. John, you have challenged my thinking on how to deal with real-world problems and have emphasized the importance of collaboration and team work. I would also like to thank you for giving me the opportunity to work with the ideas for health research team. Part of this research was financially supported by the Primary Health Care Transition Fund. My committee was also instrumental and invaluable. Dr. Lynn Martin and Dr. Alison Pedlar— thank you for your interest and support in this work. In particular, I would like to express my appreciation to Lynn—thank you for your helpful feedback, advice regarding academia, and for your on-going support throughout this research! Thank you Alison for introducing me to a new method of inquiry-qualitative research- and for believing in the importance of this subject matter. Special thanks go to the ten staff who shared their personal stories about their experiences of supporting adults with intellectual disabilities and pica. I hope that many will gain from your experience and insight in supporting persons with pica. Behind the scenes are a number of people whom I also wish to thank. They include Lacey Langlois for her help with conducting the community focus group, Sara Murphy for her help with re-coding the transcripts, and Patty Montague for her encouragement along the way and for sharing her pearls of wisdom with me. To my fellow colleagues Norma and Joe, thank you vi both for your friendship and for the many memorable potlucks these last two years, and to Jilan for the many great conversations we have had! Last, but certainly not least, my heartfelt thanks to my family and friends. In the context of writing this thesis, my dear cousin Susan Brown passed away from cancer. I will forever remember your courage, smile, and zest for life. To my parents and extended family, I would like to thank you for your constant love and support. My gratitude is also extended to my dearest friend Sabiha. Finally, I would like to thank my partner Rob for being my “rock” and for your continued love and support. vii TABLE OF CONTENTS AUTHOR’S DECLARATION ................................................................................................... ii ABSTRACT...............................................................................................................................iii ACKNOWLEDGEMENTS ....................................................................................................... vi LIST OF TABLES .................................................................................................................... xii LIST OF FIGURES..................................................................................................................xiii 1.0 Introduction ........................................................................................................................... 1 2.0 Literature Review.................................................................................................................. 5 2.1 Historical Perspective........................................................................................................ 5 2.2 Definition and Types of Pica............................................................................................. 6 2.3 Prevalence of Pica ............................................................................................................. 9 2.4 The Behavioral Function of Pica..................................................................................... 13 2.5 Consequences of Pica...................................................................................................... 14 2.5.1 Medical Consequences............................................................................................. 14 2.5.2 Social Consequences................................................................................................ 17 2.6 Risk Factors for Pica ......................................................................................................
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