- Email: [email protected]
Health Promotion for Individuals With Intellectual Disabilities in the Community
The Journal for Nurse Practitioners xxx (xxxx) xxx
Contents lists available at ScienceDirect
The Journal for Nurse Practitioners journal homepage: www.npjournal.org
Brief Report
Health Promotion for Individuals With Intellectual Disabilities in the Community Heather Alico Lauria, DNP, FNP-BC, Julee Waldrop, DNP, PNP-BC a b s t r a c t Keywords: community-based Down syndrome exercise health promotion nutrition
Few health promotion interventions exist for adolescents and young adults with intellectual disabilities. This project evaluated the feasibility and satisfaction with a health promotion curriculum, Health U., adapted to a community-based setting by a nurse practitioner for individuals with Down syndrome and intellectual disabilities. Results demonstrate that this program was feasible and positively impacted participants. Caregivers of program participants were highly satisfied and would recommend this program. Nurse practitioners are uniquely positioned to be leaders in establishing similar programs to meet the health promotion needs of this often-underserved population. © 2019 Elsevier Inc. All rights reserved.
Introduction Nearly 1 in 5 children in the United States are obese, and the prevalence of this disease is increasing.1 In adolescents and young adults with Down syndrome (DS), the incidence of obesity is even higher than their similarly aged peers, at 30% to 50%.2 Few interventions have been developed for this population, which requires adapted plans for management due to intellectual, metabolic, and behavioral health differences.3,4 Furthermore, only about half of health care providers, such as nurse practitioners (NPs), recommend physical activity to individuals with DS.5 Lack of knowledge and educational preparation to address health promotion in individuals with intellectual disabilities (ID), which includes individuals with DS, can be a barrier to NPs recommending an obesity-related intervention such as physical activity. Providers who feel informed about interventions for individuals with ID are more likely to give a recommendation and assist with care coordination.5,6 An interdisciplinary approach from health care providers, such as NPs, social workers, and health promotion educators, can support individuals in the community to participate in healthy lifestyle activities.7 NPs who earn the Doctorate in Nursing Practice (DNP) are uniquely prepared to translate evidence into practice, deliver practice change interventions, and evaluate implications for practice for populations.8 This project evaluated the feasibility of a program based on Health U. in a community setting with adolescents and young adults with ID.9 Evidence demonstrates that individuals with ID who participated in a health promotion program in the research setting could show improvement in health outcomes, including an increase in physical activity, decrease in sedentary time,10,11 and weight loss.10,12,13 One study demonstrated an increase in lean body https://doi.org/10.1016/j.nurpra.2019.09.004 1555-4155/© 2019 Elsevier Inc. All rights reserved.
mass14; however, 3 studies did not show significant loss of fat mass after their intervention.10,12,14 Interventions lasted for 8 to 12 weeks, meeting 2 to 3 times per week for 50 to 90 minutes. The interventions contained a variety of activities, many of which used treadmills for aerobic activity or repetition of exercises for weight training as well as simpler activities such as walking.10-13,15 Programs used interdisciplinary health care providers to execute their interventions. For example, Boer and Moss15 used a nutritionist, physical therapist, recreation specialist, and behavior specialist. Ulrich et al11 and McDermott et al13 used facilitators with experience in education for a persons who had a developmental disability. Additionally, some of the studies discussed the benefits of caregiver involvement to help maintain healthy lifestyle and to maintain a record of dietary habits.10,11 Only 1 study measured caregiver satisfaction but showed statistically significant satisfaction with healthier eating, weight loss, and increased physical activity.10 Of particular importance to this project were the studies that included or focused on adolescents,10,11,14 including a randomized trial of a broad health education program, “Steps to Your Health,” performed in young adults with ID in a community setting.13 Together, this evidence gives support for providing health promotion interventions/programs for individuals with DS and ID. Methods Sample and Setting This program evaluation received a determination of nonhuman subject’s research by the University of North Carolina
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Table Health U. Program Sessions by Topic (Modified for This Setting) Session
Topic
1a 1b 2a 2b 3a 3b 4a 4b 5a 5b 6
Introduction to Nutrition & MyPlate Fruits, Vegetables & Dairy Grains & Proteins Meal Planning: Variety & Mixed Dishes Added Sugars Added Fats Making Healthy Choices Healthy Snacks vs Treats Healthy Portions Eating Out and Around Town Healthy Pot-luck Celebration
Measures and Analysis Attendance was taken at each session. Caregivers completed a survey using a Likert scale (range, 1-5; with 1 being strong disagreement and 5 being strong agreement) to measure their satisfaction with the program at its conclusion. Health behaviors were measured using components of the 2010 National Youth Physical Activity and Nutrition Survey (PANS) modified for North Carolina’s Eat Smart Move More campaign.17,18 The questions were further modified to address caregiver observed nutrition changes, increased physical activity, and weight changes of the participant. Data were analyzed using descriptive statistics. Results
at Chapel Hill Institutional Review Board. The program was offered through and took place in a community setting at a nonprofit organization, Triangle Down Syndrome Network (North Carolina Down Syndrome Alliance), in Raleigh, North Carolina, a medium sized city that focuses on making resources open and available to individuals with DS and their families.16 The program was advertised by Triangle Down Syndrome Network to individuals with DS aged 15 to 24 years, with a significant emphasis on inclusion of all interested individuals with ID. The program was adapted to the setting and led by a DNP, family NP student, and facilitated by a special education teacher and social worker. Program participants were not charged for their involvement in the program. The costs to provide the program were covered by Triangle Down Syndrome Network. Program The Health U. program was developed to model family-based interventions that have been successful for weight loss in typically developing children with a few modifications to meet the cognitive needs of individuals with ID and has demonstrated effectiveness in a research setting.9,10 The published curriculum provides detailed instruction for implementing the intervention in 1-hour sessions over the course of 10 weeks.9 For this program, which took place in a community-based setting, the group met once weekly for 6 weeks for 2 hours each time based on recommendations from the executive director of Triangle Down Syndrome Network, who believed that longer sessions for a shorter number of weeks would be most desirable for families in this setting. Caregivers did not attend the program sessions. Each session began with an introduction, followed by a nutrition activity (Table), 15-minutes of physical activity, a taste test, and wrap-up.9 MyPlate healthy eating is the foundation of the program. The program uses visual and hands-on resources, large flashcards, and color-coded items from the appendices of the Health U. curriculum.9 Examples of exercise activities in this project included running races, dancing, yoga, and jump rope. Evaluation Evaluation components included attendance, caregiver satisfaction with the design and implementation of the program, and caregivers’ perception of health behavior changes, nutrition and exercise knowledge, consumption of fruits and vegetables, and consumption of fast food by the program participants. Caregivers were primarily the participants’ parent and in 1 case, a close friend. The project director also took field notes to evaluate the feasibility of the program in this novel setting.
Sample Characteristics Six adolescents and young adults (3 males, 3 females), ages 15 to 23 years (mean, 18.5; standard deviation [SD], 2.69 years) attended an average of 4 (SD, 0.69) sessions (3 to 6 participants per session). Each participant had at least 1 caregiver to provide information for evaluation purposes. There were 4 mothers, 1 father, and 1 friend that completed the evaluations. One caregiver did not specify race, 1 identified as white and Native American, and 4 identified their race as white only. Five of the caregivers identified their participant as having DS and 1 with ID. No detailed information regarding ID in individuals with DS was obtained. The mean height was 61.3 (SD 2.36) inches, and mean weight was 171.5 (SD, 32.79) pounds, resulting in a mean body mass index of 32.1 (SD, 6.10) kg/m2. This information was obtained from caregivers at the end of the program. Owing to the short duration of the program, this information was not evaluated as part of program outcomes. Caregiver Satisfaction Overall, caregivers were very satisfied with their participants’ experience with the program (mean, 4.8; SD, 0.41). One caregiver commented, “This was an awesome programdwe came away with new skills and met new friends.” This implies that most caregivers strongly agreed that their participant’s overall experience with the program was good and that they would recommend it to others. The mean score related to satisfaction with course content (4.8; SD, 0.41), materials (4.8; SD, 0.41), and schedule (5.0; SD, 0.0) showed that most respondents strongly agreed that the course content was relevant, organized, and interactive and that the schedule of the program worked well for their family. All respondents strongly agreed that the instructor was prompt, reliable, knowledgeable, and approachable. All respondents strongly agreed that the program assistants worked well with participants, were reliable, and were friendly. The take-away benefits from participation in the program varied among respondents. Respondents were neutral or agreed that the participant made noticeable lifestyle changes (mean, 3.7; SD, 0.82) and enjoyed attending the program (mean, 4.7; SD, 0.52). One caregiver commented, “My child was more aware of healthy snacks and making better food choices.” Health Behavior Caregivers commented, “we have noticed our daughter making better choices about the food she eats” and “[our child is] more knowledgeable about healthy foods and exercise.” This shows that caregivers believed their child demonstrated a little more nutrition knowledge (mean, 2.2; SD, 0.75), physical activity knowledge (mean, 2.3; SD, 0.52), variety of physical activity (mean, 2.3; SD,
H. Alico Lauria, J. Waldrop / The Journal for Nurse Practitioners xxx (xxxx) xxx
0.52), and fruit intake (mean, 2.3; SD, 0.52) than before [the program]. Respondents reported that their child ate fast food (mean, 3.2; SD, 0.41) and drank low-fat milk (mean, 3.0; SD, 0.0) the same as before. Weight was reported to be the same as before with a mean of 3.3 (SD, 0.52). One participant’s mother commented, “During the program [our child] talked about the healthy eating he was doing. He found a few things he liked, but there wasn’t a large change. Prior to the program, our family already focused on more of the healthy eating and eating sweets in moderation.” Feasibility Many lessons were learned throughout the implementation of this program. A significant barrier to enrolling participants was the location of the organization office because it serves a large geographic area. Individuals in further counties could not get weekly transportation to the central location. Teach-back, a method of teaching where participants can reiterate back to their instructor what they have learned, was crucial to understanding individuals’ attainment of new knowledge. Repetition and one-on-one education were often used to help participants understand the concepts. Generally speaking, caregivers were very appreciative of the programming. They often asked questions at the end of each session when they came to pick up their participant and seemed engaged. Trust was built between the program director and caregivers by weekly e-mail updates and brief discussions before and after each session. During each session, it was obvious that each participant had varying behavioral and educational needs. For this reason, it was extremely valuable to have a 1:2 ratio of volunteers to participants. As the program leaders reflected on each session, it became increasingly clear that there was value in emphasizing take-away ideas and encouraging healthy habits at home. Therefore, as the sessions progressed, more time was spent on individualizing the “take-away” worksheets to set goals for trying new healthy foods or increasing frequency of exercise. Discussion Caregivers believed that weight and consumption of fast food decreased or was unchanged. Additionally, fruit and vegetable consumption slightly increased per caregiver report. This result trended toward prior results with Health U. in the research setting, which demonstrated that participants consumed statistically significantly more fruit and vegetables.9,10 Caregivers of participants did notice an increase in physical activity, variety of physical activity, and nutrition and physical activity knowledge. This is consistent with an increase in minutes of physical activity immediately and at 6 months after Health U. program completion in the research setting as well as other in other studies.10,11 Overall, caregivers were satisfied with this program. Caregivers’ mean satisfaction rating with the participants’ enjoyment, engagement, and peer interaction in the community setting were rated a mean of 5.0 (SD, 0.0). These results are similar to the Curtin et al10 Study, where these mean outcomes ranged from 4.0 to 5.0 (no SDs were reported). Caregivers in the community setting rated satisfaction with their child’s healthy eating and physical activity behavior changes a mean of 3.7 (SD, 0.82) in our study. This result was most similar to the group of caregivers in the Curtin et al10 study who did not participate in caregiver education whose mean satisfaction rating in the same category was 3.6. A limitation of this project was that it did not include a formal evaluation of the participants’ satisfaction
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with the program and is an important aspect that should be included in the evaluation of future programs. The environment was a familiar organization where many of the participants have attended events before. This trusted setting contributed to the feasibility of the program because caregivers felt comfortable allowing participants to stay at the organization office with the program facilitators. All caregivers felt strongly that the time, frequency, and duration of the program met their scheduling needs. The office’s geographic location presented a problem for some who were potentially interested but lived too far away to travel on a weeknight. In the future, another session of the program can be implemented at a different site or on the weekend to accommodate those individuals. This highlights the difference in need for a program implemented in a community-based setting vs a larger university-based research study. The small classroom space was also a limitation. Using a larger space could have decreased restlessness and allowed for more room for physical activity during the class. An empty parking lot was used for physical activity but put limitations on the type of physical activity that could be done. Limited space may be a reality for community implementation. Whereas the Curtin et al10 study involved caregiver attendance, this program did not.1 Alternatively, a “take-away” sheet was provided after every learning session so that knowledge learned could be shared with caregivers as well as used for goal setting and accountability.2 Caregivers were additionally given a brief summary of what was learned in the session and encouraged to participate in goal setting for the coming week. There was inconsistency in how caregivers reinforced knowledge and healthy behaviors at home. Some caregivers actively engaged in healthy eating and exercise, whereas others did not. This also may have influenced various health behaviors that remained unchanged because the families already practiced healthy behaviors. With the small group in a community setting, facilitators could personalize activities and foster participants’ belief in themselves. Physical activities, for example, were chosen based on the participants’ abilities and interests. Two of the participants took dance class and were encouraged to lead some dancing for exercise. Other participants chose the music, whereas another was complimented for his flexibility. When new physical activities were introduced, repetition and positive reinforcement were used to help participants master or adapt the new activity. For those who could not jump rope, for example, the rope was laid on the ground, and they successfully jumped back and forth over it. Facilitators redirected disruptive behavior while positively reinforcing appropriate behavior. By the third session, the program leader noticed beneficial peer relationships forming; participants provided each other with support and encouragement. Participants also actively engaged in preparing the taste test food items, which allowed for experiential learning about the preparation process for healthy foods. A significant strength of Health U. is that it was specifically developed for individuals with ID.9 The program was designed to meet the behavioral, intellectual, and metabolic needs of the participants and offered alterative learning strategies and activities depending on participants’ needs. Another strength of Health U. is small group learning, which allowed professional volunteers to give personal attention to each participant.9 This helped each participant be actively engaged in the program. A small group setting also allowed intimate peer relationships to form as well as new relationships among caregivers and the program director. Using individuals from varying disciplines, such as a nurse, special education teacher, and social worker, allowed the program to accommodate to the needs of each participant. Each participant
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was successful in his or her own way because personal needs were met and strengths were highlighted using teach-back, working toward correct answers, and positive reinforcement of appropriate behavior. NPs prepared with the DNP degree gain expertise in population health and leadership.8 This project is one example of how an NP in practice might take on a leadership role in the community to improve a specific population’s health and wellness. Conclusion Overall, the Health U. program is an excellent resource to promote healthy behaviors, nutrition and exercise education, and positive peer relationships.9 As demonstrated, the curriculum is very adaptable and feasible in a community setting. NPs can feel comfortable recommending or leading implementation of the modified program in their community. NPs can play a role in educating parents of individuals with ID on healthy behaviors so they can best support their child while participating in a health promotion program. Organizations serving adolescents and young adults with DS or ID should feel empowered to use the Health U. curriculum to meet the needs of their local population and collaborate with NPs in the community.9 It is critical not only to just this specific underserved population but also to our nation’s health that NPs become leaders in wellness in our communities. References 1. Centers for Disease Control and Prevention. National Center for Health Statistics. National Health and Nutrition Examination Survey. NCHS Fact Sheet, December 2017. https://www.cdc.gov/nchs/data/factsheets/factsheet_nhanes. htm. February 25, 2019. Accessed May 20, 2019. 2. Rimmer JH, Yamaki K, Lowry BMD, Wang E, Vogel LC. Obesity and obesityrelated secondary conditions in adolescents with intellectual/developmental disabilities. J Intellect Disabil Res. 2010;54(9):787-794. https://doi.org/10.1111/ j.1365-2788.2010.01305.x. 3. Murray J, Ryan-Krause P. Obesity in children with Down syndrome: background and recommendations for management. Pediatr Nurs. 2010;36(6):314-319. 4. Fleming RK, Stokes EA, Curtin C, et al. Behavioral health in developmental disabilities: a comprehensive program of nutrition, exercise, and weight reduction. Int J Behav Consult Ther. 2008;4(3):287-296. https://doi.org/ 10.1037/h0100858. 5. Courtney-Long EA, Stevens AC, Carroll DD, Griffin-Blake S, Omura JD, Carlson SA. Primary care providers’ level of preparedness for recommending physical activity to adults with disabilities. Prevent Chronic Dis. 2017;14:E114. https:// doi.org/10.5888/pcd14.170328.
6. Ford SH, Choi H, Brunssen S, Van Riper M. Delays and disabilities: NP screening and care management. J Nurse Pract. 2017;13(2):e67-e73. https://doi.org/ 10.1016/j.nurpra.2016.11.005. 7. 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;41(2):147-153. https://doi.org/10.1046/j.13652648.2003.02522.x. 8. American Association of Colleges of Nursing. DNP Essentials. The Essentials of Doctoral Education for Advanced Nursing Practice. https://www.aacnnursing. org/DNP/DNP-Essentials. 2006. Accessed May 20, 2019. 9. Bandini L, Fleming R, Maslin M, Scampini R, Health U. a Nutrition Curriculum for Teenagers with Intellectual and Developmental Disabilities. Worcester, MA: University of Massachusetts Medical School, Eunice Kennedy Shriver Center; 2012. 10. Curtin C, Bandini LG, Must A, Gleason J, et al. Parent support improves weight loss in adolescents and young adults with Down syndrome. J Pediatr. 2013;163(5):1402-1408.e1. https://doi.org/10.1016/j.jpeds.2013.06.081. 11. Ulrich DA, Burghardt AR, Lloyd M, Tiernan C, Hornyak JE. Physical activity benefits of learning to ride a two-wheel bicycle for children with Down syndrome: a randomized trial. Phys Ther. 2011;91(10):1463-1477. https://doi.org/ 10.2522/ptj.20110061. 12. Seron BB, Silva RA, Greguol M. Effects of two programs of exercise on body composition of adolescents with Down syndrome. Rev Paul Pediatr. 2014;32(1):92-98. https://doi.org/10.1590/S0103-05822014000100015. 13. McDermott S, Whitner W, Thomas-Koger M, et al. An efficacy trial of ‘Steps to Your Health,’ a health promotion programme for adults with intellectual disability. Health Educ J. 2012;71(3):278-290. https://doi.org/10.1177/ 0017896912441240. mez-Cabello A, Ara I, Moreno LA, 14. Gonz alez-Agüero A, Vicente-Rodríguez G, Go Casajús JA. A combined training intervention programme increases lean mass in youths with Down syndrome. Res Dev Disabil. 2011;32(6):2383-2388. https://doi.org/10.1016/j.ridd.2011.07.024. 15. Boer PH, Moss SJ. Effect of continuous aerobic vs. interval training on selected anthropometrical, physiological and functional parameters of adults with Down syndrome. J Intellect Disabil Res. 2016;60(4):322-334. https://doi.org/ 10.1111/jir.12251. 16. Mission and Vision. Triangle Down Syndrome Network. https://www. ncdsalliance.org/mission-vision-purpose/. Accessed May 20, 2019. 17. Department of Health and Human Services. Health Behavior Survey: Physical Activity and Nutrition (PAN) Behaviors Monitoring Form. Department of Health and Human Services: Raleigh, NC, USA. https://www. eatsmartmovemorenc.com/BehaviorsForm/Texts/PAN-Behaviors-MonitoringForm.pdf. Accessed May 20, 2019. 18. Eat Smart, Move More. Physical Activity and Nutrition Behaviors Monitoring Form. http://www.eatsmartmovemorenc.com/BehaviorsForm/BehaviorsForm. html. 2017. Accessed May 20, 2019.
Heather Alico Lauria, DNP, FNP-BC, is a Nurse Practitoner at Advance Primary Care, Cary, NC and can be reached at [email protected]. Julee Waldrop, DNP, PNP-BC, FAANP, FAAN, is a Professor, University of North Carolina School of Nursing, Chapel Hill, NC. In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.
Contents lists available at ScienceDirect
The Journal for Nurse Practitioners journal homepage: www.npjournal.org
Brief Report
Health Promotion for Individuals With Intellectual Disabilities in the Community Heather Alico Lauria, DNP, FNP-BC, Julee Waldrop, DNP, PNP-BC a b s t r a c t Keywords: community-based Down syndrome exercise health promotion nutrition
Few health promotion interventions exist for adolescents and young adults with intellectual disabilities. This project evaluated the feasibility and satisfaction with a health promotion curriculum, Health U., adapted to a community-based setting by a nurse practitioner for individuals with Down syndrome and intellectual disabilities. Results demonstrate that this program was feasible and positively impacted participants. Caregivers of program participants were highly satisfied and would recommend this program. Nurse practitioners are uniquely positioned to be leaders in establishing similar programs to meet the health promotion needs of this often-underserved population. © 2019 Elsevier Inc. All rights reserved.
Introduction Nearly 1 in 5 children in the United States are obese, and the prevalence of this disease is increasing.1 In adolescents and young adults with Down syndrome (DS), the incidence of obesity is even higher than their similarly aged peers, at 30% to 50%.2 Few interventions have been developed for this population, which requires adapted plans for management due to intellectual, metabolic, and behavioral health differences.3,4 Furthermore, only about half of health care providers, such as nurse practitioners (NPs), recommend physical activity to individuals with DS.5 Lack of knowledge and educational preparation to address health promotion in individuals with intellectual disabilities (ID), which includes individuals with DS, can be a barrier to NPs recommending an obesity-related intervention such as physical activity. Providers who feel informed about interventions for individuals with ID are more likely to give a recommendation and assist with care coordination.5,6 An interdisciplinary approach from health care providers, such as NPs, social workers, and health promotion educators, can support individuals in the community to participate in healthy lifestyle activities.7 NPs who earn the Doctorate in Nursing Practice (DNP) are uniquely prepared to translate evidence into practice, deliver practice change interventions, and evaluate implications for practice for populations.8 This project evaluated the feasibility of a program based on Health U. in a community setting with adolescents and young adults with ID.9 Evidence demonstrates that individuals with ID who participated in a health promotion program in the research setting could show improvement in health outcomes, including an increase in physical activity, decrease in sedentary time,10,11 and weight loss.10,12,13 One study demonstrated an increase in lean body https://doi.org/10.1016/j.nurpra.2019.09.004 1555-4155/© 2019 Elsevier Inc. All rights reserved.
mass14; however, 3 studies did not show significant loss of fat mass after their intervention.10,12,14 Interventions lasted for 8 to 12 weeks, meeting 2 to 3 times per week for 50 to 90 minutes. The interventions contained a variety of activities, many of which used treadmills for aerobic activity or repetition of exercises for weight training as well as simpler activities such as walking.10-13,15 Programs used interdisciplinary health care providers to execute their interventions. For example, Boer and Moss15 used a nutritionist, physical therapist, recreation specialist, and behavior specialist. Ulrich et al11 and McDermott et al13 used facilitators with experience in education for a persons who had a developmental disability. Additionally, some of the studies discussed the benefits of caregiver involvement to help maintain healthy lifestyle and to maintain a record of dietary habits.10,11 Only 1 study measured caregiver satisfaction but showed statistically significant satisfaction with healthier eating, weight loss, and increased physical activity.10 Of particular importance to this project were the studies that included or focused on adolescents,10,11,14 including a randomized trial of a broad health education program, “Steps to Your Health,” performed in young adults with ID in a community setting.13 Together, this evidence gives support for providing health promotion interventions/programs for individuals with DS and ID. Methods Sample and Setting This program evaluation received a determination of nonhuman subject’s research by the University of North Carolina
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H. Alico Lauria, J. Waldrop / The Journal for Nurse Practitioners xxx (xxxx) xxx
Table Health U. Program Sessions by Topic (Modified for This Setting) Session
Topic
1a 1b 2a 2b 3a 3b 4a 4b 5a 5b 6
Introduction to Nutrition & MyPlate Fruits, Vegetables & Dairy Grains & Proteins Meal Planning: Variety & Mixed Dishes Added Sugars Added Fats Making Healthy Choices Healthy Snacks vs Treats Healthy Portions Eating Out and Around Town Healthy Pot-luck Celebration
Measures and Analysis Attendance was taken at each session. Caregivers completed a survey using a Likert scale (range, 1-5; with 1 being strong disagreement and 5 being strong agreement) to measure their satisfaction with the program at its conclusion. Health behaviors were measured using components of the 2010 National Youth Physical Activity and Nutrition Survey (PANS) modified for North Carolina’s Eat Smart Move More campaign.17,18 The questions were further modified to address caregiver observed nutrition changes, increased physical activity, and weight changes of the participant. Data were analyzed using descriptive statistics. Results
at Chapel Hill Institutional Review Board. The program was offered through and took place in a community setting at a nonprofit organization, Triangle Down Syndrome Network (North Carolina Down Syndrome Alliance), in Raleigh, North Carolina, a medium sized city that focuses on making resources open and available to individuals with DS and their families.16 The program was advertised by Triangle Down Syndrome Network to individuals with DS aged 15 to 24 years, with a significant emphasis on inclusion of all interested individuals with ID. The program was adapted to the setting and led by a DNP, family NP student, and facilitated by a special education teacher and social worker. Program participants were not charged for their involvement in the program. The costs to provide the program were covered by Triangle Down Syndrome Network. Program The Health U. program was developed to model family-based interventions that have been successful for weight loss in typically developing children with a few modifications to meet the cognitive needs of individuals with ID and has demonstrated effectiveness in a research setting.9,10 The published curriculum provides detailed instruction for implementing the intervention in 1-hour sessions over the course of 10 weeks.9 For this program, which took place in a community-based setting, the group met once weekly for 6 weeks for 2 hours each time based on recommendations from the executive director of Triangle Down Syndrome Network, who believed that longer sessions for a shorter number of weeks would be most desirable for families in this setting. Caregivers did not attend the program sessions. Each session began with an introduction, followed by a nutrition activity (Table), 15-minutes of physical activity, a taste test, and wrap-up.9 MyPlate healthy eating is the foundation of the program. The program uses visual and hands-on resources, large flashcards, and color-coded items from the appendices of the Health U. curriculum.9 Examples of exercise activities in this project included running races, dancing, yoga, and jump rope. Evaluation Evaluation components included attendance, caregiver satisfaction with the design and implementation of the program, and caregivers’ perception of health behavior changes, nutrition and exercise knowledge, consumption of fruits and vegetables, and consumption of fast food by the program participants. Caregivers were primarily the participants’ parent and in 1 case, a close friend. The project director also took field notes to evaluate the feasibility of the program in this novel setting.
Sample Characteristics Six adolescents and young adults (3 males, 3 females), ages 15 to 23 years (mean, 18.5; standard deviation [SD], 2.69 years) attended an average of 4 (SD, 0.69) sessions (3 to 6 participants per session). Each participant had at least 1 caregiver to provide information for evaluation purposes. There were 4 mothers, 1 father, and 1 friend that completed the evaluations. One caregiver did not specify race, 1 identified as white and Native American, and 4 identified their race as white only. Five of the caregivers identified their participant as having DS and 1 with ID. No detailed information regarding ID in individuals with DS was obtained. The mean height was 61.3 (SD 2.36) inches, and mean weight was 171.5 (SD, 32.79) pounds, resulting in a mean body mass index of 32.1 (SD, 6.10) kg/m2. This information was obtained from caregivers at the end of the program. Owing to the short duration of the program, this information was not evaluated as part of program outcomes. Caregiver Satisfaction Overall, caregivers were very satisfied with their participants’ experience with the program (mean, 4.8; SD, 0.41). One caregiver commented, “This was an awesome programdwe came away with new skills and met new friends.” This implies that most caregivers strongly agreed that their participant’s overall experience with the program was good and that they would recommend it to others. The mean score related to satisfaction with course content (4.8; SD, 0.41), materials (4.8; SD, 0.41), and schedule (5.0; SD, 0.0) showed that most respondents strongly agreed that the course content was relevant, organized, and interactive and that the schedule of the program worked well for their family. All respondents strongly agreed that the instructor was prompt, reliable, knowledgeable, and approachable. All respondents strongly agreed that the program assistants worked well with participants, were reliable, and were friendly. The take-away benefits from participation in the program varied among respondents. Respondents were neutral or agreed that the participant made noticeable lifestyle changes (mean, 3.7; SD, 0.82) and enjoyed attending the program (mean, 4.7; SD, 0.52). One caregiver commented, “My child was more aware of healthy snacks and making better food choices.” Health Behavior Caregivers commented, “we have noticed our daughter making better choices about the food she eats” and “[our child is] more knowledgeable about healthy foods and exercise.” This shows that caregivers believed their child demonstrated a little more nutrition knowledge (mean, 2.2; SD, 0.75), physical activity knowledge (mean, 2.3; SD, 0.52), variety of physical activity (mean, 2.3; SD,
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0.52), and fruit intake (mean, 2.3; SD, 0.52) than before [the program]. Respondents reported that their child ate fast food (mean, 3.2; SD, 0.41) and drank low-fat milk (mean, 3.0; SD, 0.0) the same as before. Weight was reported to be the same as before with a mean of 3.3 (SD, 0.52). One participant’s mother commented, “During the program [our child] talked about the healthy eating he was doing. He found a few things he liked, but there wasn’t a large change. Prior to the program, our family already focused on more of the healthy eating and eating sweets in moderation.” Feasibility Many lessons were learned throughout the implementation of this program. A significant barrier to enrolling participants was the location of the organization office because it serves a large geographic area. Individuals in further counties could not get weekly transportation to the central location. Teach-back, a method of teaching where participants can reiterate back to their instructor what they have learned, was crucial to understanding individuals’ attainment of new knowledge. Repetition and one-on-one education were often used to help participants understand the concepts. Generally speaking, caregivers were very appreciative of the programming. They often asked questions at the end of each session when they came to pick up their participant and seemed engaged. Trust was built between the program director and caregivers by weekly e-mail updates and brief discussions before and after each session. During each session, it was obvious that each participant had varying behavioral and educational needs. For this reason, it was extremely valuable to have a 1:2 ratio of volunteers to participants. As the program leaders reflected on each session, it became increasingly clear that there was value in emphasizing take-away ideas and encouraging healthy habits at home. Therefore, as the sessions progressed, more time was spent on individualizing the “take-away” worksheets to set goals for trying new healthy foods or increasing frequency of exercise. Discussion Caregivers believed that weight and consumption of fast food decreased or was unchanged. Additionally, fruit and vegetable consumption slightly increased per caregiver report. This result trended toward prior results with Health U. in the research setting, which demonstrated that participants consumed statistically significantly more fruit and vegetables.9,10 Caregivers of participants did notice an increase in physical activity, variety of physical activity, and nutrition and physical activity knowledge. This is consistent with an increase in minutes of physical activity immediately and at 6 months after Health U. program completion in the research setting as well as other in other studies.10,11 Overall, caregivers were satisfied with this program. Caregivers’ mean satisfaction rating with the participants’ enjoyment, engagement, and peer interaction in the community setting were rated a mean of 5.0 (SD, 0.0). These results are similar to the Curtin et al10 Study, where these mean outcomes ranged from 4.0 to 5.0 (no SDs were reported). Caregivers in the community setting rated satisfaction with their child’s healthy eating and physical activity behavior changes a mean of 3.7 (SD, 0.82) in our study. This result was most similar to the group of caregivers in the Curtin et al10 study who did not participate in caregiver education whose mean satisfaction rating in the same category was 3.6. A limitation of this project was that it did not include a formal evaluation of the participants’ satisfaction
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with the program and is an important aspect that should be included in the evaluation of future programs. The environment was a familiar organization where many of the participants have attended events before. This trusted setting contributed to the feasibility of the program because caregivers felt comfortable allowing participants to stay at the organization office with the program facilitators. All caregivers felt strongly that the time, frequency, and duration of the program met their scheduling needs. The office’s geographic location presented a problem for some who were potentially interested but lived too far away to travel on a weeknight. In the future, another session of the program can be implemented at a different site or on the weekend to accommodate those individuals. This highlights the difference in need for a program implemented in a community-based setting vs a larger university-based research study. The small classroom space was also a limitation. Using a larger space could have decreased restlessness and allowed for more room for physical activity during the class. An empty parking lot was used for physical activity but put limitations on the type of physical activity that could be done. Limited space may be a reality for community implementation. Whereas the Curtin et al10 study involved caregiver attendance, this program did not.1 Alternatively, a “take-away” sheet was provided after every learning session so that knowledge learned could be shared with caregivers as well as used for goal setting and accountability.2 Caregivers were additionally given a brief summary of what was learned in the session and encouraged to participate in goal setting for the coming week. There was inconsistency in how caregivers reinforced knowledge and healthy behaviors at home. Some caregivers actively engaged in healthy eating and exercise, whereas others did not. This also may have influenced various health behaviors that remained unchanged because the families already practiced healthy behaviors. With the small group in a community setting, facilitators could personalize activities and foster participants’ belief in themselves. Physical activities, for example, were chosen based on the participants’ abilities and interests. Two of the participants took dance class and were encouraged to lead some dancing for exercise. Other participants chose the music, whereas another was complimented for his flexibility. When new physical activities were introduced, repetition and positive reinforcement were used to help participants master or adapt the new activity. For those who could not jump rope, for example, the rope was laid on the ground, and they successfully jumped back and forth over it. Facilitators redirected disruptive behavior while positively reinforcing appropriate behavior. By the third session, the program leader noticed beneficial peer relationships forming; participants provided each other with support and encouragement. Participants also actively engaged in preparing the taste test food items, which allowed for experiential learning about the preparation process for healthy foods. A significant strength of Health U. is that it was specifically developed for individuals with ID.9 The program was designed to meet the behavioral, intellectual, and metabolic needs of the participants and offered alterative learning strategies and activities depending on participants’ needs. Another strength of Health U. is small group learning, which allowed professional volunteers to give personal attention to each participant.9 This helped each participant be actively engaged in the program. A small group setting also allowed intimate peer relationships to form as well as new relationships among caregivers and the program director. Using individuals from varying disciplines, such as a nurse, special education teacher, and social worker, allowed the program to accommodate to the needs of each participant. Each participant
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was successful in his or her own way because personal needs were met and strengths were highlighted using teach-back, working toward correct answers, and positive reinforcement of appropriate behavior. NPs prepared with the DNP degree gain expertise in population health and leadership.8 This project is one example of how an NP in practice might take on a leadership role in the community to improve a specific population’s health and wellness. Conclusion Overall, the Health U. program is an excellent resource to promote healthy behaviors, nutrition and exercise education, and positive peer relationships.9 As demonstrated, the curriculum is very adaptable and feasible in a community setting. NPs can feel comfortable recommending or leading implementation of the modified program in their community. NPs can play a role in educating parents of individuals with ID on healthy behaviors so they can best support their child while participating in a health promotion program. Organizations serving adolescents and young adults with DS or ID should feel empowered to use the Health U. curriculum to meet the needs of their local population and collaborate with NPs in the community.9 It is critical not only to just this specific underserved population but also to our nation’s health that NPs become leaders in wellness in our communities. References 1. Centers for Disease Control and Prevention. National Center for Health Statistics. National Health and Nutrition Examination Survey. NCHS Fact Sheet, December 2017. https://www.cdc.gov/nchs/data/factsheets/factsheet_nhanes. htm. February 25, 2019. Accessed May 20, 2019. 2. Rimmer JH, Yamaki K, Lowry BMD, Wang E, Vogel LC. Obesity and obesityrelated secondary conditions in adolescents with intellectual/developmental disabilities. J Intellect Disabil Res. 2010;54(9):787-794. https://doi.org/10.1111/ j.1365-2788.2010.01305.x. 3. Murray J, Ryan-Krause P. Obesity in children with Down syndrome: background and recommendations for management. Pediatr Nurs. 2010;36(6):314-319. 4. Fleming RK, Stokes EA, Curtin C, et al. Behavioral health in developmental disabilities: a comprehensive program of nutrition, exercise, and weight reduction. Int J Behav Consult Ther. 2008;4(3):287-296. https://doi.org/ 10.1037/h0100858. 5. Courtney-Long EA, Stevens AC, Carroll DD, Griffin-Blake S, Omura JD, Carlson SA. Primary care providers’ level of preparedness for recommending physical activity to adults with disabilities. Prevent Chronic Dis. 2017;14:E114. https:// doi.org/10.5888/pcd14.170328.
6. Ford SH, Choi H, Brunssen S, Van Riper M. Delays and disabilities: NP screening and care management. J Nurse Pract. 2017;13(2):e67-e73. https://doi.org/ 10.1016/j.nurpra.2016.11.005. 7. 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;41(2):147-153. https://doi.org/10.1046/j.13652648.2003.02522.x. 8. American Association of Colleges of Nursing. DNP Essentials. The Essentials of Doctoral Education for Advanced Nursing Practice. https://www.aacnnursing. org/DNP/DNP-Essentials. 2006. Accessed May 20, 2019. 9. Bandini L, Fleming R, Maslin M, Scampini R, Health U. a Nutrition Curriculum for Teenagers with Intellectual and Developmental Disabilities. Worcester, MA: University of Massachusetts Medical School, Eunice Kennedy Shriver Center; 2012. 10. Curtin C, Bandini LG, Must A, Gleason J, et al. Parent support improves weight loss in adolescents and young adults with Down syndrome. J Pediatr. 2013;163(5):1402-1408.e1. https://doi.org/10.1016/j.jpeds.2013.06.081. 11. Ulrich DA, Burghardt AR, Lloyd M, Tiernan C, Hornyak JE. Physical activity benefits of learning to ride a two-wheel bicycle for children with Down syndrome: a randomized trial. Phys Ther. 2011;91(10):1463-1477. https://doi.org/ 10.2522/ptj.20110061. 12. Seron BB, Silva RA, Greguol M. Effects of two programs of exercise on body composition of adolescents with Down syndrome. Rev Paul Pediatr. 2014;32(1):92-98. https://doi.org/10.1590/S0103-05822014000100015. 13. McDermott S, Whitner W, Thomas-Koger M, et al. An efficacy trial of ‘Steps to Your Health,’ a health promotion programme for adults with intellectual disability. Health Educ J. 2012;71(3):278-290. https://doi.org/10.1177/ 0017896912441240. mez-Cabello A, Ara I, Moreno LA, 14. Gonz alez-Agüero A, Vicente-Rodríguez G, Go Casajús JA. A combined training intervention programme increases lean mass in youths with Down syndrome. Res Dev Disabil. 2011;32(6):2383-2388. https://doi.org/10.1016/j.ridd.2011.07.024. 15. Boer PH, Moss SJ. Effect of continuous aerobic vs. interval training on selected anthropometrical, physiological and functional parameters of adults with Down syndrome. J Intellect Disabil Res. 2016;60(4):322-334. https://doi.org/ 10.1111/jir.12251. 16. Mission and Vision. Triangle Down Syndrome Network. https://www. ncdsalliance.org/mission-vision-purpose/. Accessed May 20, 2019. 17. Department of Health and Human Services. Health Behavior Survey: Physical Activity and Nutrition (PAN) Behaviors Monitoring Form. Department of Health and Human Services: Raleigh, NC, USA. https://www. eatsmartmovemorenc.com/BehaviorsForm/Texts/PAN-Behaviors-MonitoringForm.pdf. Accessed May 20, 2019. 18. Eat Smart, Move More. Physical Activity and Nutrition Behaviors Monitoring Form. http://www.eatsmartmovemorenc.com/BehaviorsForm/BehaviorsForm. html. 2017. Accessed May 20, 2019.
Heather Alico Lauria, DNP, FNP-BC, is a Nurse Practitoner at Advance Primary Care, Cary, NC and can be reached at [email protected]. Julee Waldrop, DNP, PNP-BC, FAANP, FAAN, is a Professor, University of North Carolina School of Nursing, Chapel Hill, NC. In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.