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The Disability Experience: State of Research, Scholarship and the Arts
Health and Wellness Panel Submission: Master in Nutrition and Dietetics Students, Laura Maydak, Juliana Musmanno, Erin Long and Amanda Bright
Theoretical and Experiential perspectives on nutrition in the disability experience by students from the Nutrition and Dietetics programs at the University of Pittsburgh.
Background
The effects disability and nutrition have on one another are often overlooked. The panel proposes to take a theoretical look into how socioeconomic, mental, physical, and emotional conditions affect nutritional status and needs. An interactive experience with individuals in the disabled community offers insight to their food and nutrition behaviors and understanding. Opportunities for students in University of Pittsburgh's Coordinated Master in Nutrition & Dietetics will be highlighted. These include, but are not limited to; a pilot project for development and implementation of healthy cooking classes for caretakers and disabled individuals at Mainstay Life Services, an assisted living facility; and the development, implementation and evaluation of an evidenced- based nutrition, Frequently Asked Questions (FAQ) resource, for healthcare professionals and arthritis support group members. Additionally, the role of a Registered Dietitian (RD) in aiding persons with disabilities will be addressed, as it is an essential piece in ensuring optimal quality of life outcomes.
Methods
As with the array of experiential evidence gathered by the participants, multiple methods were utilized in gathering information. A literature review was conducted regarding the nutrition needs of individuals with disabilities. A preliminary analysis of three studies was done to evaluate the nutritional aspect of the disability experience for a wide variety of conditions1-3.
The nutrition assessment process was utilized to identify the basic nutrition related problems and skills in an assisted living disability community. Evidence-based basic nutrition knowledge was used to develop and implement classes providing individuals at Mainstay Life Services the unique chance to model healthful behaviors through menu planning and skill development through preparation of food.
By request of several Arthritis support groups, a literature review was conducted to investigate the effects of dietary components on the subsequent conditions. The review focused its work on questions relating to pertinent nutrition issues within the arthritic community.
Results
As anticipated, the literature review revealed the need for dietetic intervention in the care of individuals, both young and old, with disabilities. While some individuals with disabilities are capable of living independently, they may be unable to make appropriate nutritional choices for themselves. This becomes an issue for those who have a disability that requires a specific diet, as well as those who only need to follow the Dietary Guidelines for Americans, which is the evidence-based nutritional advice for healthy individuals over the age of two.
When adults with learning disabilities are relocated to community homes from the institutionswhere they previously lived, their nutritional statuseswere negatively affected. Screenings given prior to departure and one year post-departure were compared for risks concerning nutritional adequacy, weight problems, and nutrition-related problem. The comparison between the two screenings revealed an increase in overall risk relating to food groups, unintentional weight gain and loss, and overall risk relating to weight1.
A separate study focused on children, ages 4 – 13, with neurological impairments, including cerebral palsy, being unable to walk, having speech difficulty, and continuous saliva drooling. Similarly, the study revealed the need for nutritional support for these individuals. Problems relating to food intake included constipation, vomiting, inability to self-feed, choking on food, prolonged feeding times, and gastrostomy tubes. Parental concern accompanied these problems, but 64% of the respondents had never had a feeding or nutritional assessment. This reveals both a lack of adequate nutritional intervention, as well as the need for it2. Even in cases of independent living, a chronic health condition can lead individuals into feeling as though they are not able to perform their daily activities. This lack of physical mobility, however small, is still categorized as a disabling entity.
Many disabled individuals find comfort in familiarity and fear what is unknown, including foodacceptance and beliefs. Additionally, they may be turned off by complex ideas and are most comfortable with basic or familiar information. The challenge with nutrition and the disabled population is to find balance between nutritious foods and what is known and readily available to them. A RDhas the specialized skill set to find a balance between good nutrition, familiarity and ways to combine the two in an accessible way. In addition, an RD is a valuable resource because they can effectively work with this population to incorporate nutrition and understand the basic essentials to a healthy lifestyle.
In the case of the Arthritis literature review, thepain experienced by individuals can be measured and quantifiable. The review conducted showed promising results for dietary intervention within patients of both Rheumatoid and Osteoarthritis4-9. While some studies show statistical significance for the alleviating effects of dietary components, further research needs to be performed in order for clinical significance to be established4-9. The RD can help to foster the continuation of evidence-based research for many unique populations within the disabled community. Communities such asArthritis support groupscan also help to further this research by implementing the researching role of a qualified RD.
Discussion/conclusion
Each disability, whether it is socioeconomic, mental, physical, or emotional, has a unique influence upon the affected individual. Registered Dietitians are the professional experts able to understand the underlying science dictating the nutritional needs of an individual, as well as the complex motivations behind what, why and how an individual chooses to eat. The addition of an RD to the medical team is essential to provide individuals with disabilities the best possible care, allowing them to lead the highest quality life possible.
RDs can, and should, fill the gap that has been created. Overall quality of life will likely improve significantly in individuals with disabilities once RDs join their medical team and address their nutritional needs. An RD on the team is a valuable resource. By effectively working with this population, a Registered Dietitian can incorporate the evidence based principles of good nutrition coupled with the food preparation practical experience basics that are essential to a healthy lifestyle to prevent and treat chronic diseases that plague all individuals and groups in the United States.
References
1 Bryan F, Allan T, Russell L. The move from a long-stay learning disabilities hospital to community homes: a comparison of client’s nutritional status. J Hum NutrDietet. 2000;13:265-270.
2 Sullivan P, Lambert B, Rose M, Ford-Adams M, Johnson A, Griffiths P. Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study. Dev Med & Child Neuro. 2000;42:674-680.
3 Humphries K, Traci M, Seekins T. Nutrition and adults with intellectual or developmental disabilities: systematic literature review results. Intellect Dev Disabil.2009;47(3):163-185.
4Scoditti E, Calabriso N, Massaro M, et al. Mediterranean diet polyphenols reduce inflammatory angiogenesis through MMP-9 and COX-2 inhibition in human vascular endothelial cells: A potentially protective mechanism in atherosclerotic vascular disease and cancer. Archives of Biochemistry and Biophysics. 2012;527:81-89.
5Elkan A, Sjoberg B, Kolsrud B, et al. Gluten-free vegan diet induces decreased LDL and oxidized LDL levels and raised atheroprotective natural antibodies phosphorlycholine in patients with rheumatoid arthritis: a randomized study. Arthritis Research & Therapy.2008;10:R34
6Nakasone Y, Watabe K, Watanabe K, et al. Effect of a glucosamine-based combination supplement containing chondroitin sulfate and antioxidant micronutrients in subjects with symptomatic knee osteoarthritis: A pilot study. Experimental and Therapeutic Medicine. 2011;2:893-899.
7Sawitzke AD, Shi H, Finco MF, et al.The effect of glucosamine and/or chondroitin sulfate on the progression of knee osteoarthritis.Arthritis & Rheumatism. 2008;10:3183-3191.
8Caughley GE, James MJ, Proudman SM, et al. Fish oil supplementation increases the cyclooxygenase inhibitory activity of paracetamol in rheumatoid arthritis patients. Complementary Theories in Medicine. 2010;18:171-174.
9Bahadori B, Uitz E, Thonhofer R, et al. Omega-3 Fatty Acids Infusions as Adjuvant Therapy in Rheumatoid Arthritis. J Parenter Enteral Nutr. 2010;34:151-155.