Disability and Health Journal 7 (2014) 157e163 www.disabilityandhealthjnl.com
Review Article
Nutrition interventions for people with disabilities: A scoping review Jessica L. King, M.S.*, Jamie L. Pomeranz, Ph.D., and Julie W. Merten, M.S. University of Florida, Department of Behavioral Science and Community Health, 1225 Center Drive, P.O. Box 100175 HSC, Gainesville, FL 32610-0175, USA
Abstract Background: Approximately 19 percent of Americans have a disability. People with disabilities are at greater risk for obesity and poor nutrition, as well as resulting secondary conditions. CDC recommends interventions for this population to address this disparity. Objective: The purpose of this article is to present the results of a scoping review of studies pertaining to community-based nutrition interventions among adults with disabilities. Methods: Electronic databases were searched to discover articles pertaining to community-based nutrition interventions for people with disabilities. Results: Sixteen journal articles published between 2002 and 2012 were reviewed. The reviewed community based nutrition interventions for adults with disabilities showed some success in improving health outcomes. Conclusions: There is a need for future research, particularly interventions with objective outcome measures and including people with disabilities throughout the development and implementation of programs. Published by Elsevier Inc. Keywords: Disability; Nutrition intervention; Obesity; Scoping review
While proper nutrition has emerged as a priority for the health of Americans, the nutritional needs and interventions for some certain populations, such as people with disabilities, remain largely understudied. As of 2010, there were 56.7 million people living in the United States (US) with a disability, representing approximately 19 percent of the population.1,2 Unfortunately, people with disabilities are more likely to experience more nutrition-related health disparities compared to people without disabilities.3,4 For example, people with disabilities are disproportionately more likely to be overweight or obese.5,6 Because obesity contributes to a variety of major medical concerns, such as heart disease, various cancers, diabetes, and increases disability-related complications, there is a critical need to intervene with people with disabilities to prevent further disability. Failure to intervene will result in greater medical costs and poor quality of life. People with disabilities may experience functional limitations that may impact their ability to perform many tasks essential to proper nutrition. For example, people with disabilities may have limited time, energy or ability to perform the tasks needed for proper nutrition. Such tasks include
Authors have no conflict of interest to declare. This is an original submission and all authors contributed to its production. * Corresponding author. E-mail address: [email protected] (J.L. King). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.12.003
shopping for groceries, cooking, or even prepare meals (i.e. chopping and cutting foods).3,4 Additionally, people with disabilities often take medications which can complicate nutrient absorption and cause weight gain.4 In addition, people with disabilities are more likely to have lower incomes, limiting their ability to afford healthier foods.1 The health risks associated with poor nutrition and obesity underscore the importance of evidenced based nutrition interventions. Research has shown that proper nutrition reduces the risk of developing other chronic diseases or secondary conditions that can affect quality of life.5 Unfortunately, people with disabilities are less likely to utilize traditional preventive health services, such as nutrition programs, because these services may inadequately address the unique physical and environmental barriers that impede behavior change.7 Thus, the purpose of this paper is to present the results of a scoping review of the current literature to determine the state of nutrition interventions for people with disabilities.
Methods The authors conducted a scoping review of community based nutrition interventions for adults with disabilities. A scoping review was selected as it provides a preliminary assessment of the scope of existing research.8 Compared to
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a systematic review, in a scoping review the literature review does not include formal quality assessment and can be performed with relatively limited time and resources, while still offering an assessment of the extent of research evidence. Scoping reviews may also provide evidence toward the value of a future systematic review.8 Literature was gathered from ERIC, PubMed, ProQuest, and EBSCO electronic databases. Search terms included ‘‘nutrition,’’ ‘‘diet,’’ ‘‘food,’’ ‘‘weight loss,’’ ‘‘health promotion,’’ ‘‘disabled,’’ ‘‘disability,’’ ‘‘program,’’ and ‘‘intervention.’’ Initial search revealed 6473 articles across all databases. Results were then narrowed to articles published since January 1, 2002, in peer reviewed journals, reducing the number of articles to 1795 (see Table 1). The authors selected this limited time frame to determine current research in the selected area. Titles and abstracts were reviewed to determine whether the articles met additional inclusion criteria: (i) participants aged more than 18 years with a disability, (ii) intervention conducted in a community-based setting (not exclusive home settings) and (iii) included a nutrition component within the intervention. Reference lists were cross-referenced and related sources were also examined. The resulting articles were examined for sample size, country of origin, study design, disability, recruitment methods, intervention design, outcome measures and results.
Results Of the sixteen studies reviewed, thirteen were conducted in the US, two in the United Kingdom9,10 and one in Italy.11 Sample sizes ranged from six to 195 participants. Five studies2,10e13 were cross-diagnoses studies, while the remaining studies focused on a single diagnosis (see Table 2). Cross-diagnoses studies included participants who had varying diagnoses resulting in different disabilities. Six studies reviewed included a control or comparison group2,12,14e17 and of those, three studies represented randomized controlled trials.2,14,17 The remaining ten studies featured a single group design. Most commonly, participants were recruited through local community-based disability service centers such as Centers for Independent Table 1 Results of search strategy Database searched EBSCO ERIC Proquest PubMed
Hand searching and checking reference lists
Living or rehabilitation centers (n 5 10). Participants were also recruited through mailings and flyers at local clinics (n 5 5) and hospitals or referred by a health care provider (n 5 5). While an inclusion requirement was for the intervention to contain nutrition information, many of the studies provided education on several topics, most commonly exercise (n 5 13) and stress management (n 5 6). Other topics included emotional health, goal setting, sexual health, and disability specific coping strategies (e.g. managing medication interactions, communicating with health care providers). Given the variety of topics covered, eight studies defined their intervention as ‘‘health’’ or ‘‘health promotion,’’ while six other studies were titled as ‘‘obesity’’ or ‘‘weight loss’’ interventions and featured limited nutrition information. The interventions were primarily educationbased, with an emphasis on increased knowledge. Thirteen interventions also included behavioral or skill training (food diaries, role playing, menu planning, grocery store visits, etc.). Twelve of the interventions utilized a group session format, three included both individual meetings and group sessions (calls, home visits, and consultations), and one study only included one-on-one meetings. The majority of the studies assessed weight loss or body mass index (BMI) change (n 5 11).5,9e11,13,15,16,18e21 Measurement of change varied from self-reported height/weight calculations to lipid testing. Another common outcome measure was improved health behaviors (n 5 10). This included eating more fruits and vegetables, eating less fat or simple carbohydrates, and keeping a food diary. Two studies measured improved physical activity.15,17 Psychological outcomes such as self-efficacy were also measured in five studies.5,12,14,17,22 Each of the studies reported positive results based on specified outcome measures. No differences were found between studies that focused on intellectual disabilities or cross-diagnoses studies. Only one study11 concluded the intervention as unsuccessful, though this may have been due to the high dropout rate.
Discussion Many of the studies were promising and resulted in significant reported weight loss or reduced BMI. The majority
Number of papers found 34 157 859 745 1795 22
Met the inclusion criteria n 5 12 Met the inclusion criteria n 5 4 16 studies available for review
Table 2 Information on each study including study location, number of participants, study design, disability, outcome measures, and intervention components Article Disability Study design Intervention components Outcome measure Developmental
68 participants Pretest and post-test quasi experimental design
Bertoli et al (2008)
Cross-diagnosis
37 participants Pretest and post-test quasi experimental design
Block et al (2010)
Cross-diagnosis
35 participants Pretest and post-test quasi experimental with comparison
Bradley (2005)
Learning disabilities
9 participants Pretest and post-test quasi experimental design
Brown et al (2006)
Psychiatric
36 participants Pretest and post-test quasi experimental with comparison
Chen et al (2006)
Spinal cord injury
16 participants Pretest and post-test quasi experimental design
Community-based 7-month twiceweekly group education and exercise program led by professionals with assistance from peer mentors as participant leaders and motivator; education with some modeling and demonstrations One time individual 60 min educational nutritional counseling session led by doctor and dietician. Bi-monthly follow up phone calls Ten full day meetings over 5 months led by project staff with interactive group workshops and peer mentoring. Workshops covered nutrition, sexuality and relationships, self-advocacy and team building and included education and role playing 10 month program on healthy eating and exercise delivered by dietician, with education and skill building (food prep, grocery store visits); 34 meetings, 90 mine2 h each OT, dietician, and exercise physiologist led intervention. Staff member from community support program assisted. Group met once a week for 2 h for 12 weeks. Utilized weight loss and psychiatric rehab strategies and individual diet consultations 12 weekly, 90 min classes on nutrition, exercise, and behavior modification for participants and spouses led by registered dietician; primarily education, included planning menus
Baseline and completion (7 months) Weight, BMI, abdominal girth, self-reported nutrition, physical activity, access to care, and life satisfaction
Significant decreases in average weight loss (2.6 lbs, p 5 0.03) average BMI ( p 5 0.04) and abdominal girth ( p 5 0.005). Significant increases in physical activity and eating habits
Baseline and completion (12 months) Anthropometry, DXA, calorimetry, biochemical parameters Baseline, completion (5 months), 6 month and 1 year follow up Self-efficacy
65% of participants dropped out. 6 participants reported significant weight reduction ( p 5 0.001) and fat mass reduction ( p 5 0.00) Statistically significant increase in self-efficacy among participants ( p 5 0.007)
Baseline and completion (10 months) Weight, waist, knowledge, exercise
Average weight loss of 6.2 kg; average BMI decrease from 37.7 to 34.7. Eight of nine participants ate breakfast regularly; increased vegetable or salad consumption decreased unhealthy snacks The intervention group lost 6 lbs and the control group gained 1 lb. 16 participants lost weight and 6 lost more than 10 pounds. No significant differences in blood pressure, calories or lifestyle behavior changes
Baseline and completion Weight, BMI, waist, blood pressure, behavior changes
Baseline, completion (12 weeks), 12 week follow up (week 24) Height, weight, waist, neck, 5 site skinfold, DXA, BP, blood test, serum lipids; diet behavior; psychosocial well being
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Bazzano et al (2009)
Results
14 participants lost 4.2 6 2.7 kg, one maintained and one gained 2.3 kg. Significant decrease in BMI, anthropometric measures, fat mass, and improvement in diet behavior and psychosocial and physical functioning (continued)
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Disability
Study design
Intervention components
Outcome measure
Results
Ewing et al (2004)
Cognitive
189 participants Pretest and post-test quasi experimental design with comparative group
Baseline and completion (8 weeks) Height, weight, blood pressure, knowledge test BRFSS questions on fruit and vegetables and exercise
Geller et al (2009)
Developmental
45 participants Pretest and post-test quasi experimental design
Health Education Learning Program (HELP) e Eight 90 min education classes taught by health educators; emphasize exercise, nutritional choices, stress reduction; 2e4 home visits Physician-led twice-weekly hour long empowerment session; also included meal planning
Gretchen-Doorly et al (2009)
Schizophrenia
9 participants Pretest and post-test quasi experimental design
Horner-Johnson et al (2011)
Cross-diagnosis
95 participants Randomized controlled trial with wait list comparison
18.5% of learning disability group had at least 0.75 decrease in BMI, but no change in average weight. Each group showed positive improvement in diet and exercise behavior Average weight loss of 2.60 lbs ( p 5 0.14) for all participants. Average loss of 6.03 lbs ( p 5 0.11) for those at 18 months Significantly increased self-efficacy for health practices ( p ! 0.05) and decreased perceptions of stress ( p ! 0.01) Scores improved significantly ( p ! 0.001) for participants in immediate intervention group while those in wait list showed no change. Following participation in workshop, scores of wait list participants increased significantly ( p 5 0.001)
Mann et al (2006)
Cognitive
192 participants Pretest and post-test quasi experimental design
Marshall et al (2003)
Cross-diagnosis
25 participants Pretest and post-test quasi experimental design
Robinson-Whelen et al (2006)
Physical
137 participants Randomized controlled trial with wait list control
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Table 2 (continued ) Article
Baseline and completion of program (9 weeks) Height, weight, knowledge test using BRFSS questions, selfreported diet and exercise
Highly significant average change in BMI ( p ! 0.001). Improved knowledge, frequency of exercise and diet among participants
Baseline, each session, and end of program (6 or 8 weeks) Weight and height to calculate BMI
Significant decreases in average weight ( p ! 0.001) and BMI ( p ! 0.001)
Baseline, completion of intervention and 3 months post-intervention Self-reported height and weight, self-efficacy, social support, social connectedness, physical health, mental health
Intervention group showed significant improvements in health behaviors compared to control group
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Six-step program led by clinic staff: six 1 h didactic, six 1 h activity sessions on nutrition, exercise, and stress management Community Based Healthy Lifestyles for People with Disabilities health promotion program e 2½ day workshop followed by 9 months of 2 h monthly support group meetings led by research staff and trained community members. Education based with goal setting and healthy eating activities Steps to Your Health Curriculum-9week, 90 min per week, group session led by community disability service staff members trained by university professionals on nutritional choices, exercise, stress reduction; also included individual home visits Content adapted from ‘‘Activate’’ materials, 2 h group sessions led by nurses held weekly for 6 or 8 weeks on healthy eating and exercise Based on social learning theory, group sessions led by 2 women with disabilities on exercise, sleep, relaxation, nutrition, menopause, osteoporosis, emotional health, self-management
Baseline and 2 month intervals until end of program (as long as 18 months) Weight Baseline and completion (6 weeks) Health behaviors, self-efficacy, activity-related affect, commitment to plan of action Baseline, 4, 7, and 10 months, and following 9 months of support group HPLP II e 52 items on health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management
Mean weight loss of 5.5 lbs, with additional mean of 3.4 lbs at follow up
Average weight loss of 13.12 lbs at end of intervention. Average cumulative weight loss of 19.40 lbs at follow up
Participants in the intervention group were significantly more likely to have higher self-efficacy for health behaviors ( p ! 0.05) and healthpromoting behaviors ( p ! 0.05)
Baseline, end of intervention (6 months) and 6 month follow up (1 year) Weight and height to determine BMI Waist circumference
Baseline, 2 months, 5 months, and 8 months Health promoting behaviors (HPLP II), quality of life, selfefficacy Multiple sclerosis Stuifbergen et al (2003)
113 participants Randomized controlled trial
Cross-diagnosis Saunders et al (2011)
79 participants Pretest and post-test quasi experimental design
Cognitive Sailer et al (2006)
6 participants Pretest and post-test quasi experimental design
1 h group sessions, once per week for 10 weeks with new behaviors each week and weekly phone calls by therapist; included education and behavior strategies such as daily food intake and food diary Two exercise physiologists, a registered dietician, and two behavior analysts led the initial individual session and remaining monthly group sessions for the 6 month weight loss intervention with an emphasis on low-cal foods and walking Primarily facilitated by nurse with assistance from other people with MS as possible. 8 weekly 90 min education and skill building sessions on eating healthy, lifestyle adjustments, exercise for strength, stress management, intimacy, and women specific health issues
Baseline, prior to each meeting, and at 2, 3, 4 week follow ups Weight
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of the studies resulted in positive improvements in health behaviors, including increased self-efficacy, healthier eating habits, and more frequent physical activity. The measures used to assess knowledge gained as well as self-reported nutrition and exercise habits varied across studies. Several studies used reputable measures such as the BRFSS, which is widely accepted, however, these measures have not been validated among a population of people with disabilities.14,18 Individuals with intellectual disabilities may have difficulty with concepts of measurement as well as recall.16,18 Therefore, objective measures may be more appropriate for use than self-report. The studies that did use objective measures commonly used BMI in conjunction with measured weight loss. BMI has its noted flaws, most specifically not accounting for body composition, gender or age.23 According to the CDC (2012), waist or neck measurements in conjunction with weight loss may provide a more accurate perspective.3 Hip to weight ratio has been identified as a predictor of risk in several chronic diseases, including diabetes.23 However, only five studies used hip-to-weight ratio or neck girth measurements.5,9,13,15,19 While education is necessary for behavior change, education alone may not be sufficient for nutrition behavior change.24 Thirteen of the studies reviewed included a behavioral component, most commonly food diaries or menu planning. While these activities can be beneficial, they may not address common barriers faced by this population including: budgeting for healthy eating, proper cooking techniques, and grocery shopping. Porter, Capra, and Watson (2000) developed and implemented a food skills program tailored to individual needs.25 While this program model was successful, follow up studies with larger samples must be conducted to assess widespread feasibility. Two of the studies reviewed included a home visit component to further address these unique barriers and provide tailored information to participants.16,18 With the high number of medications taken by people with disabilities and the resulting medication interactions, it is curious more studies did not include medicationnutrition information as part of the nutrition program. Additionally, with this population significantly more likely to have one of a number of chronic diseases (arthritis, heart disease, diabetes, stroke, asthma, high cholesterol, high blood pressure), it would be beneficial to include the nutrition components directly related to each of these conditions.7 Common limitations of the reviewed studies included small sample sizes and study designs that did not include a control group or randomization. The small sample sizes reduce the generalizability of the findings. Of the sixteen studies, ten had fewer than fifty participants, with three having fewer than ten participants. The lack of a control or comparison group, and even more commonly randomization, call into question the rigor of some of the studies. However, it can often be difficult to recruit participants with
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disabilities, and randomization or delayed treatment is often not supported by staff at the disability centers where many of these interventions were held.16 Another limitation is the lack of follow-up studies. Nutrition habits, particularly weight loss, take time to change. A number of programs have been shown to be effective at helping people lose weight, but weight maintenance remains a challenge.5,11 Of the studies reviewed, only three had follow-ups of six months or longer.12,13 With less than six-month follow-ups, it is unclear whether the interventions were successful at changing behavior to ensure appropriate weight maintenance long-term. Only four of the reviewed studies included communitybased participation in developing or implementing the intervention.2,5,17 Community based participatory research (CBPR) is an approach designed to include collaboration with members of the community during all aspects of the research study. With the unique challenges faced by this population, including input and utilizing the community’s expertise would result in a more effective program. Additionally, CBPR serves to empower the individuals and offer buy-in into the program.5 The CDC has recommended that community-based approaches be used for health promotion interventions such as nutrition and that people with disabilities be involved at all stages of planning and implementing.3 Drum et al (2009) developed a set of guidelines for implementing community based health promotion programs for people with disabilities.26 The seven literaturesupported criteria recommend that programs (1) have an underlying conceptual or theoretical framework, (2) implement process evaluation, (3) collect outcomes data using disability-appropriate outcomes measures, (4) involve people with disabilities and their families or caregivers in the development and implementation programs, (5) consider the beliefs, practices, and values of its target groups, including support for personal choice, (6) be socially, behaviorally, programmatically, and environmentally accessible, and (7) be affordable. This criterion has been used in a health promotion intervention for people with disabilities by Horner-Johnson et al.2
Conclusion Despite these limitations, the reviewed studies do offer encouragement regarding improving the nutrition status of people with disabilities. This scoping review provides a framework for future systematic reviews on communitybased nutrition programs for people with disabilities. Few interventions currently include community-based approaches as outlined by Drum et al26 that suggest including people with disabilities in developing and implementing the nutrition interventions. Additionally, there exists a need for validated and reliable measures for this population. Current nutrition interventions lack consistency in study design and measurement, which may present a challenge in conducting
a systematic review. Further research is needed to thoroughly assess the potential of community-based nutrition interventions for people with disabilities.
References 1. Brault MW. Americans With Disabilities: 2010. Current Population Reports. Washington: US Census Bureau; 2012:70e131. 2. Horner-Johnson W, Drum CE, Abdullah N. A randomized trial of a health promotion intervention for adults with disabilities. Disabil Health J. 2011 Oct;4(4):254e261. 3. Centers for Disease Control and Prevention. Disability and Obesity [Internet]. [Place unknown]: [Publisher unknown]. Available from, www.cdc.gov/ncbddd/disabilityandhealth/obesity.html; 2012. Cited 2013 March 20. 4. Van Riper CL, Wallace LS; American Dietetic Association. Position of the American Dietetic Association: providing nutrition services for people with developmental disabilities and special health care needs. J Am Diet Assoc. 2010 Feb;110(2):296e307. 5. Bazzano AT, Zeldin AS, Diab IR, Garro NM, Allevato NA, Lehrer D; WRC Project Oversight Team. The healthy lifestyle change program: a pilot of a community-based health promotion intervention for adults with developmental disabilities. Am J Prev Med. 2009 Dec;37(6 suppl 1):S201eS208. 6. Melville CA, Cooper SA, Morrison JJ, Allan LL, Smiley EE, Williamson AA. The prevalence and determinants of obesity in adults with intellectual disabilities. J Appl Res Intellect Disabil. 2008 Sept;21(5):425e437. 7. Reichard A, Stolzle H, Fox MH. Health disparities among adults with physical disabilities or cognitive limitations compared to individuals with no disabilities in the United States. Disabil Health J. 2011 Apr;4(2):59e67. 8. Grant MJ, Booth A. A typology of reviews: an analysis of 14 review types and associated methodologies. Health Info Libr J. 2009 June;26(2):91e108. 9. Bradley S. Tackling obesity in people with learning disability. Learn Disabil Res Pract. 2005;8(7):10e14. 10. Marshall D, McConkey R, Moore G. Obesity in people with intellectual disabilities: the impact of nurse-led health screenings and health promotion activities. J Adv Nurs. 2003 Jan;41(2):147e153. 11. Bertoli S, Spadagranca A, Merati G, Testolin G, Veicsteinas A, Battezzati A. Nutritional counselling in disabled people: effects on dietary patterns, body composition and cardiovascular risk factors. Eur J Phys Rehabil Med. 2008 Jun;44(2):149e158. 12. Block P, Vanner EA, Keys CB, Rimmer JH, Skeels SE. Project shakeit-up: using health promotion, capacity building and a disability studies framework to increase self-efficacy. Disabil Rehabil. 2010;32(9):741e754. 13. Saunders PR, Saunders MD, Donnelly JE, et al. Evaluation of an approach to weight loss in adults with intellectual or developmental disabilities. Intellect Dev Disabil. 2011 Apr;49(2):103e112. 14. Stuifbergen AK, Becker H, Blozis S, Timmerman G, Kullberg V. A randomized clinical trial of a wellness intervention for women with multiple sclerosis. Arch Phys Med Rehabil. 2003;84:467e476. 15. Brown C, Goetz J, Van Sciver A, Sullivan D, Hamera E. A psychiatric rehabilitation approach to weight loss. Psychiatr Rehabil J. 2006 Spring;29(4):267e273. 16. Ewing G, McDermott S, Thomas-Koger M, Whitner W, Pierce K. Evaluation of a cardiovascular health program for participants with mental retardation and normal learners. Health Educ Behav. 2004 Feb;31(1):77e87. 17. Robinson-Whelen S, Hughes RB, Taylor HB, Colvard M, MastelSmith B, Nosek MA. Improving the health and health behaviors of women aging with physical disabilities: a peer-led health promotion program. Womens Health Issues. 2006 Nov-Dec;16(6):334e345.
J.L. King et al. / Disability and Health Journal 7 (2014) 157e163 18. Mann J, Zhou H, McDermott S, Poston MB. Health behavior change of adults with mental retardation: attendance in a health promotion program. Am J Ment Retard. 2006 Jan;111(1):62e73. 19. Chen Y, Henson S, Jackson AB, Richards JS. Obesity intervention in persons with spinal cord injury. Spinal Cord. 2006 Feb;44(2): 82e91. 20. Geller JS, Crowley M. An empowerment group visit model as treatment for obesity in developmentally delayed adults. J Dev Phys Disabil. 2009;21(5):345e353. 21. Sailer AB, Miltenberger RG, Johnson B, Zetocha K, Egemo K, Hegstad H. Evaluation of a weight loss treatment program for individuals with mild mental retardation. Child Fam Behav Ther. 2006 Apr;28(2):15e28. 22. Gretchen-Doorly D, Subotnik KL, Kite RE, Alarcon E, Nuechterlein KH. Development and evaluation of a health promotion
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group for individuals with severe psychiatric disabilities. Psychiatr Rehabil J. 2009 Summer;33(1):56e59. Dagan SS, Segev S, Novikov I, Dankner R. Waist circumference vs body mass index in association with cardiorespiratory fitness in healthy men and women: a cross sectional analysis of 403 subjects. Nutr J. 2013 Jan;12:12. Worsley A. Nutrition knowledge and food consumption: can nutrition knowledge change food behavior? Asia Pac J Clin Nutr. 2002;11(suppl 3):S579eS585. Porter J, Capra S, Watson G. An individualized food-skills program: development, implementation, evaluation. Aust Occup Ther J. 2000;47(2):51e61. Drum CE, Peterson JJ, Culley C, et al. Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities. Am J Health Promot. 2009 Nov-Dec;24(2):93e101.
Review Article
Nutrition interventions for people with disabilities: A scoping review Jessica L. King, M.S.*, Jamie L. Pomeranz, Ph.D., and Julie W. Merten, M.S. University of Florida, Department of Behavioral Science and Community Health, 1225 Center Drive, P.O. Box 100175 HSC, Gainesville, FL 32610-0175, USA
Abstract Background: Approximately 19 percent of Americans have a disability. People with disabilities are at greater risk for obesity and poor nutrition, as well as resulting secondary conditions. CDC recommends interventions for this population to address this disparity. Objective: The purpose of this article is to present the results of a scoping review of studies pertaining to community-based nutrition interventions among adults with disabilities. Methods: Electronic databases were searched to discover articles pertaining to community-based nutrition interventions for people with disabilities. Results: Sixteen journal articles published between 2002 and 2012 were reviewed. The reviewed community based nutrition interventions for adults with disabilities showed some success in improving health outcomes. Conclusions: There is a need for future research, particularly interventions with objective outcome measures and including people with disabilities throughout the development and implementation of programs. Published by Elsevier Inc. Keywords: Disability; Nutrition intervention; Obesity; Scoping review
While proper nutrition has emerged as a priority for the health of Americans, the nutritional needs and interventions for some certain populations, such as people with disabilities, remain largely understudied. As of 2010, there were 56.7 million people living in the United States (US) with a disability, representing approximately 19 percent of the population.1,2 Unfortunately, people with disabilities are more likely to experience more nutrition-related health disparities compared to people without disabilities.3,4 For example, people with disabilities are disproportionately more likely to be overweight or obese.5,6 Because obesity contributes to a variety of major medical concerns, such as heart disease, various cancers, diabetes, and increases disability-related complications, there is a critical need to intervene with people with disabilities to prevent further disability. Failure to intervene will result in greater medical costs and poor quality of life. People with disabilities may experience functional limitations that may impact their ability to perform many tasks essential to proper nutrition. For example, people with disabilities may have limited time, energy or ability to perform the tasks needed for proper nutrition. Such tasks include
Authors have no conflict of interest to declare. This is an original submission and all authors contributed to its production. * Corresponding author. E-mail address: [email protected] (J.L. King). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.12.003
shopping for groceries, cooking, or even prepare meals (i.e. chopping and cutting foods).3,4 Additionally, people with disabilities often take medications which can complicate nutrient absorption and cause weight gain.4 In addition, people with disabilities are more likely to have lower incomes, limiting their ability to afford healthier foods.1 The health risks associated with poor nutrition and obesity underscore the importance of evidenced based nutrition interventions. Research has shown that proper nutrition reduces the risk of developing other chronic diseases or secondary conditions that can affect quality of life.5 Unfortunately, people with disabilities are less likely to utilize traditional preventive health services, such as nutrition programs, because these services may inadequately address the unique physical and environmental barriers that impede behavior change.7 Thus, the purpose of this paper is to present the results of a scoping review of the current literature to determine the state of nutrition interventions for people with disabilities.
Methods The authors conducted a scoping review of community based nutrition interventions for adults with disabilities. A scoping review was selected as it provides a preliminary assessment of the scope of existing research.8 Compared to
158
J.L. King et al. / Disability and Health Journal 7 (2014) 157e163
a systematic review, in a scoping review the literature review does not include formal quality assessment and can be performed with relatively limited time and resources, while still offering an assessment of the extent of research evidence. Scoping reviews may also provide evidence toward the value of a future systematic review.8 Literature was gathered from ERIC, PubMed, ProQuest, and EBSCO electronic databases. Search terms included ‘‘nutrition,’’ ‘‘diet,’’ ‘‘food,’’ ‘‘weight loss,’’ ‘‘health promotion,’’ ‘‘disabled,’’ ‘‘disability,’’ ‘‘program,’’ and ‘‘intervention.’’ Initial search revealed 6473 articles across all databases. Results were then narrowed to articles published since January 1, 2002, in peer reviewed journals, reducing the number of articles to 1795 (see Table 1). The authors selected this limited time frame to determine current research in the selected area. Titles and abstracts were reviewed to determine whether the articles met additional inclusion criteria: (i) participants aged more than 18 years with a disability, (ii) intervention conducted in a community-based setting (not exclusive home settings) and (iii) included a nutrition component within the intervention. Reference lists were cross-referenced and related sources were also examined. The resulting articles were examined for sample size, country of origin, study design, disability, recruitment methods, intervention design, outcome measures and results.
Results Of the sixteen studies reviewed, thirteen were conducted in the US, two in the United Kingdom9,10 and one in Italy.11 Sample sizes ranged from six to 195 participants. Five studies2,10e13 were cross-diagnoses studies, while the remaining studies focused on a single diagnosis (see Table 2). Cross-diagnoses studies included participants who had varying diagnoses resulting in different disabilities. Six studies reviewed included a control or comparison group2,12,14e17 and of those, three studies represented randomized controlled trials.2,14,17 The remaining ten studies featured a single group design. Most commonly, participants were recruited through local community-based disability service centers such as Centers for Independent Table 1 Results of search strategy Database searched EBSCO ERIC Proquest PubMed
Hand searching and checking reference lists
Living or rehabilitation centers (n 5 10). Participants were also recruited through mailings and flyers at local clinics (n 5 5) and hospitals or referred by a health care provider (n 5 5). While an inclusion requirement was for the intervention to contain nutrition information, many of the studies provided education on several topics, most commonly exercise (n 5 13) and stress management (n 5 6). Other topics included emotional health, goal setting, sexual health, and disability specific coping strategies (e.g. managing medication interactions, communicating with health care providers). Given the variety of topics covered, eight studies defined their intervention as ‘‘health’’ or ‘‘health promotion,’’ while six other studies were titled as ‘‘obesity’’ or ‘‘weight loss’’ interventions and featured limited nutrition information. The interventions were primarily educationbased, with an emphasis on increased knowledge. Thirteen interventions also included behavioral or skill training (food diaries, role playing, menu planning, grocery store visits, etc.). Twelve of the interventions utilized a group session format, three included both individual meetings and group sessions (calls, home visits, and consultations), and one study only included one-on-one meetings. The majority of the studies assessed weight loss or body mass index (BMI) change (n 5 11).5,9e11,13,15,16,18e21 Measurement of change varied from self-reported height/weight calculations to lipid testing. Another common outcome measure was improved health behaviors (n 5 10). This included eating more fruits and vegetables, eating less fat or simple carbohydrates, and keeping a food diary. Two studies measured improved physical activity.15,17 Psychological outcomes such as self-efficacy were also measured in five studies.5,12,14,17,22 Each of the studies reported positive results based on specified outcome measures. No differences were found between studies that focused on intellectual disabilities or cross-diagnoses studies. Only one study11 concluded the intervention as unsuccessful, though this may have been due to the high dropout rate.
Discussion Many of the studies were promising and resulted in significant reported weight loss or reduced BMI. The majority
Number of papers found 34 157 859 745 1795 22
Met the inclusion criteria n 5 12 Met the inclusion criteria n 5 4 16 studies available for review
Table 2 Information on each study including study location, number of participants, study design, disability, outcome measures, and intervention components Article Disability Study design Intervention components Outcome measure Developmental
68 participants Pretest and post-test quasi experimental design
Bertoli et al (2008)
Cross-diagnosis
37 participants Pretest and post-test quasi experimental design
Block et al (2010)
Cross-diagnosis
35 participants Pretest and post-test quasi experimental with comparison
Bradley (2005)
Learning disabilities
9 participants Pretest and post-test quasi experimental design
Brown et al (2006)
Psychiatric
36 participants Pretest and post-test quasi experimental with comparison
Chen et al (2006)
Spinal cord injury
16 participants Pretest and post-test quasi experimental design
Community-based 7-month twiceweekly group education and exercise program led by professionals with assistance from peer mentors as participant leaders and motivator; education with some modeling and demonstrations One time individual 60 min educational nutritional counseling session led by doctor and dietician. Bi-monthly follow up phone calls Ten full day meetings over 5 months led by project staff with interactive group workshops and peer mentoring. Workshops covered nutrition, sexuality and relationships, self-advocacy and team building and included education and role playing 10 month program on healthy eating and exercise delivered by dietician, with education and skill building (food prep, grocery store visits); 34 meetings, 90 mine2 h each OT, dietician, and exercise physiologist led intervention. Staff member from community support program assisted. Group met once a week for 2 h for 12 weeks. Utilized weight loss and psychiatric rehab strategies and individual diet consultations 12 weekly, 90 min classes on nutrition, exercise, and behavior modification for participants and spouses led by registered dietician; primarily education, included planning menus
Baseline and completion (7 months) Weight, BMI, abdominal girth, self-reported nutrition, physical activity, access to care, and life satisfaction
Significant decreases in average weight loss (2.6 lbs, p 5 0.03) average BMI ( p 5 0.04) and abdominal girth ( p 5 0.005). Significant increases in physical activity and eating habits
Baseline and completion (12 months) Anthropometry, DXA, calorimetry, biochemical parameters Baseline, completion (5 months), 6 month and 1 year follow up Self-efficacy
65% of participants dropped out. 6 participants reported significant weight reduction ( p 5 0.001) and fat mass reduction ( p 5 0.00) Statistically significant increase in self-efficacy among participants ( p 5 0.007)
Baseline and completion (10 months) Weight, waist, knowledge, exercise
Average weight loss of 6.2 kg; average BMI decrease from 37.7 to 34.7. Eight of nine participants ate breakfast regularly; increased vegetable or salad consumption decreased unhealthy snacks The intervention group lost 6 lbs and the control group gained 1 lb. 16 participants lost weight and 6 lost more than 10 pounds. No significant differences in blood pressure, calories or lifestyle behavior changes
Baseline and completion Weight, BMI, waist, blood pressure, behavior changes
Baseline, completion (12 weeks), 12 week follow up (week 24) Height, weight, waist, neck, 5 site skinfold, DXA, BP, blood test, serum lipids; diet behavior; psychosocial well being
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Bazzano et al (2009)
Results
14 participants lost 4.2 6 2.7 kg, one maintained and one gained 2.3 kg. Significant decrease in BMI, anthropometric measures, fat mass, and improvement in diet behavior and psychosocial and physical functioning (continued)
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Disability
Study design
Intervention components
Outcome measure
Results
Ewing et al (2004)
Cognitive
189 participants Pretest and post-test quasi experimental design with comparative group
Baseline and completion (8 weeks) Height, weight, blood pressure, knowledge test BRFSS questions on fruit and vegetables and exercise
Geller et al (2009)
Developmental
45 participants Pretest and post-test quasi experimental design
Health Education Learning Program (HELP) e Eight 90 min education classes taught by health educators; emphasize exercise, nutritional choices, stress reduction; 2e4 home visits Physician-led twice-weekly hour long empowerment session; also included meal planning
Gretchen-Doorly et al (2009)
Schizophrenia
9 participants Pretest and post-test quasi experimental design
Horner-Johnson et al (2011)
Cross-diagnosis
95 participants Randomized controlled trial with wait list comparison
18.5% of learning disability group had at least 0.75 decrease in BMI, but no change in average weight. Each group showed positive improvement in diet and exercise behavior Average weight loss of 2.60 lbs ( p 5 0.14) for all participants. Average loss of 6.03 lbs ( p 5 0.11) for those at 18 months Significantly increased self-efficacy for health practices ( p ! 0.05) and decreased perceptions of stress ( p ! 0.01) Scores improved significantly ( p ! 0.001) for participants in immediate intervention group while those in wait list showed no change. Following participation in workshop, scores of wait list participants increased significantly ( p 5 0.001)
Mann et al (2006)
Cognitive
192 participants Pretest and post-test quasi experimental design
Marshall et al (2003)
Cross-diagnosis
25 participants Pretest and post-test quasi experimental design
Robinson-Whelen et al (2006)
Physical
137 participants Randomized controlled trial with wait list control
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Table 2 (continued ) Article
Baseline and completion of program (9 weeks) Height, weight, knowledge test using BRFSS questions, selfreported diet and exercise
Highly significant average change in BMI ( p ! 0.001). Improved knowledge, frequency of exercise and diet among participants
Baseline, each session, and end of program (6 or 8 weeks) Weight and height to calculate BMI
Significant decreases in average weight ( p ! 0.001) and BMI ( p ! 0.001)
Baseline, completion of intervention and 3 months post-intervention Self-reported height and weight, self-efficacy, social support, social connectedness, physical health, mental health
Intervention group showed significant improvements in health behaviors compared to control group
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Six-step program led by clinic staff: six 1 h didactic, six 1 h activity sessions on nutrition, exercise, and stress management Community Based Healthy Lifestyles for People with Disabilities health promotion program e 2½ day workshop followed by 9 months of 2 h monthly support group meetings led by research staff and trained community members. Education based with goal setting and healthy eating activities Steps to Your Health Curriculum-9week, 90 min per week, group session led by community disability service staff members trained by university professionals on nutritional choices, exercise, stress reduction; also included individual home visits Content adapted from ‘‘Activate’’ materials, 2 h group sessions led by nurses held weekly for 6 or 8 weeks on healthy eating and exercise Based on social learning theory, group sessions led by 2 women with disabilities on exercise, sleep, relaxation, nutrition, menopause, osteoporosis, emotional health, self-management
Baseline and 2 month intervals until end of program (as long as 18 months) Weight Baseline and completion (6 weeks) Health behaviors, self-efficacy, activity-related affect, commitment to plan of action Baseline, 4, 7, and 10 months, and following 9 months of support group HPLP II e 52 items on health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management
Mean weight loss of 5.5 lbs, with additional mean of 3.4 lbs at follow up
Average weight loss of 13.12 lbs at end of intervention. Average cumulative weight loss of 19.40 lbs at follow up
Participants in the intervention group were significantly more likely to have higher self-efficacy for health behaviors ( p ! 0.05) and healthpromoting behaviors ( p ! 0.05)
Baseline, end of intervention (6 months) and 6 month follow up (1 year) Weight and height to determine BMI Waist circumference
Baseline, 2 months, 5 months, and 8 months Health promoting behaviors (HPLP II), quality of life, selfefficacy Multiple sclerosis Stuifbergen et al (2003)
113 participants Randomized controlled trial
Cross-diagnosis Saunders et al (2011)
79 participants Pretest and post-test quasi experimental design
Cognitive Sailer et al (2006)
6 participants Pretest and post-test quasi experimental design
1 h group sessions, once per week for 10 weeks with new behaviors each week and weekly phone calls by therapist; included education and behavior strategies such as daily food intake and food diary Two exercise physiologists, a registered dietician, and two behavior analysts led the initial individual session and remaining monthly group sessions for the 6 month weight loss intervention with an emphasis on low-cal foods and walking Primarily facilitated by nurse with assistance from other people with MS as possible. 8 weekly 90 min education and skill building sessions on eating healthy, lifestyle adjustments, exercise for strength, stress management, intimacy, and women specific health issues
Baseline, prior to each meeting, and at 2, 3, 4 week follow ups Weight
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of the studies resulted in positive improvements in health behaviors, including increased self-efficacy, healthier eating habits, and more frequent physical activity. The measures used to assess knowledge gained as well as self-reported nutrition and exercise habits varied across studies. Several studies used reputable measures such as the BRFSS, which is widely accepted, however, these measures have not been validated among a population of people with disabilities.14,18 Individuals with intellectual disabilities may have difficulty with concepts of measurement as well as recall.16,18 Therefore, objective measures may be more appropriate for use than self-report. The studies that did use objective measures commonly used BMI in conjunction with measured weight loss. BMI has its noted flaws, most specifically not accounting for body composition, gender or age.23 According to the CDC (2012), waist or neck measurements in conjunction with weight loss may provide a more accurate perspective.3 Hip to weight ratio has been identified as a predictor of risk in several chronic diseases, including diabetes.23 However, only five studies used hip-to-weight ratio or neck girth measurements.5,9,13,15,19 While education is necessary for behavior change, education alone may not be sufficient for nutrition behavior change.24 Thirteen of the studies reviewed included a behavioral component, most commonly food diaries or menu planning. While these activities can be beneficial, they may not address common barriers faced by this population including: budgeting for healthy eating, proper cooking techniques, and grocery shopping. Porter, Capra, and Watson (2000) developed and implemented a food skills program tailored to individual needs.25 While this program model was successful, follow up studies with larger samples must be conducted to assess widespread feasibility. Two of the studies reviewed included a home visit component to further address these unique barriers and provide tailored information to participants.16,18 With the high number of medications taken by people with disabilities and the resulting medication interactions, it is curious more studies did not include medicationnutrition information as part of the nutrition program. Additionally, with this population significantly more likely to have one of a number of chronic diseases (arthritis, heart disease, diabetes, stroke, asthma, high cholesterol, high blood pressure), it would be beneficial to include the nutrition components directly related to each of these conditions.7 Common limitations of the reviewed studies included small sample sizes and study designs that did not include a control group or randomization. The small sample sizes reduce the generalizability of the findings. Of the sixteen studies, ten had fewer than fifty participants, with three having fewer than ten participants. The lack of a control or comparison group, and even more commonly randomization, call into question the rigor of some of the studies. However, it can often be difficult to recruit participants with
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disabilities, and randomization or delayed treatment is often not supported by staff at the disability centers where many of these interventions were held.16 Another limitation is the lack of follow-up studies. Nutrition habits, particularly weight loss, take time to change. A number of programs have been shown to be effective at helping people lose weight, but weight maintenance remains a challenge.5,11 Of the studies reviewed, only three had follow-ups of six months or longer.12,13 With less than six-month follow-ups, it is unclear whether the interventions were successful at changing behavior to ensure appropriate weight maintenance long-term. Only four of the reviewed studies included communitybased participation in developing or implementing the intervention.2,5,17 Community based participatory research (CBPR) is an approach designed to include collaboration with members of the community during all aspects of the research study. With the unique challenges faced by this population, including input and utilizing the community’s expertise would result in a more effective program. Additionally, CBPR serves to empower the individuals and offer buy-in into the program.5 The CDC has recommended that community-based approaches be used for health promotion interventions such as nutrition and that people with disabilities be involved at all stages of planning and implementing.3 Drum et al (2009) developed a set of guidelines for implementing community based health promotion programs for people with disabilities.26 The seven literaturesupported criteria recommend that programs (1) have an underlying conceptual or theoretical framework, (2) implement process evaluation, (3) collect outcomes data using disability-appropriate outcomes measures, (4) involve people with disabilities and their families or caregivers in the development and implementation programs, (5) consider the beliefs, practices, and values of its target groups, including support for personal choice, (6) be socially, behaviorally, programmatically, and environmentally accessible, and (7) be affordable. This criterion has been used in a health promotion intervention for people with disabilities by Horner-Johnson et al.2
Conclusion Despite these limitations, the reviewed studies do offer encouragement regarding improving the nutrition status of people with disabilities. This scoping review provides a framework for future systematic reviews on communitybased nutrition programs for people with disabilities. Few interventions currently include community-based approaches as outlined by Drum et al26 that suggest including people with disabilities in developing and implementing the nutrition interventions. Additionally, there exists a need for validated and reliable measures for this population. Current nutrition interventions lack consistency in study design and measurement, which may present a challenge in conducting
a systematic review. Further research is needed to thoroughly assess the potential of community-based nutrition interventions for people with disabilities.
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