I am very excited to work with the pediatric population and volunteer abroad to enhance global health! In keeping with these two goals, I will be attending the UNC PT Outreach Service Learning Trip to Guatemala. This trip was founded in 2010 and is a medical service project designed to meet the needs of the underserved and increase cultural competence among physical therapists.1 As part of this trip I will travel to Guatemala with a team of entry level Doctorate of Physical Therapy students, faculty members, and alumni to participate in volunteering and mutual learning with local physical therapists.2 The team will visit Las Obras Sociales del Hermano Pedro, which is a private Catholic hospital in Antigua. We will also visit San Jose Medical Clinic, a rural clinic in Pastores, and Cambiando Vidas, a school for children with disabilities in Pastores.2
Las Obras is a private, non-profit Catholic hospital that is located in in Antigua, Guatemala.2 Las Obras was founded by Fray Guillermo Bonilla Carvajal in 1980.2 Today its 300 employees treat and care for over 250 patients with the help of volunteers and visiting medical professionals.2 The physical therapists at Las Obras have requested more information about Down syndrome (DS) to benefit the young children with DS that they care for and treat in the hospital nursery. I have prepared and designed my Capstone project to educate the Las Obras physical therapist and physical therapist technician staff about DS, atlanto-axial instability, gross motor skill acquisition timeline, strategies to promote gross motor skill development, and the benefits of promoting gross motor skill development in children with DS.
In preparation for my Capstone project, I performed a literature review and compiled an evidence table about the components and benefits of early intervention (EI) for children with DS. This literature review provided insight into EI interventions and support for the effectiveness of EI in children with DS, particularly for long-term motor, cognitive, adaptive, and family functioning.3,4,5,6,7,8,9 In order to produce culturally sensitive and educationally appropriate presentation materials, I learned about health literacy and cultural competence and I also composed a reflective assignment about the integration of these principles into my presentation materials.
With the help of my Capstone project committee members, I developed three handouts to augment my verbal and demonstrational presentation. The first handout (English / Spanish) provides background education about the cause and possible impairments of DS. The second handout (English / Spanish) provides information about atlanto-axial instability, abnormal movement patterns common in children with DS, and strategies to avoid the development of these movement patterns. The third handout (English / Spanish) provides information about skill development in children with DS.
I have modified a previous student presentation evaluation form to enable me to gain feedback about my presentation and topics which the Las Obras staff would like to learn more about from future students. I will be giving this presentation between April 23rd and May 1st. Please follow our trip on our UNC PT Outreach blog!
I would like to thank the following people who have made this project and presentation possible: my Capstone committee members, Katie Ollendick, Debbie Thorpe, and Marian Stein; Sadye Paez for providing the presentation translation; and my husband, Krishna Aluri, for translating my presentation materials.
References
- UNC PT Outreach Blog. http://uncptoutreach.blogspot.com/. Updated 2012. Accessed 2013.
- Edwards N, Paez S. Introduction to Health and Disability in Guatemala. PHYT 895. 2013.
- Connolly BH, Morgan S, Russell FF. Evaluation of children with down syndrome who participated in an early intervention program. second follow-up study. Phys Ther. 1984;64(10):1515-1519.
- Connolly BH, Fulliton WL, Morgan SB, Russell FF, Shea AM. A longitudinal study of children with down syndrome who experienced early intervention programming. . 1993;73(3):170.
http://go.galegroup.com.libproxy.lib.unc.edu/ps/i.do?id=GALE%7CA13501900&v=2.1& - Haley SM. Postural reactions in infants with down syndrome. relationship to motor milestone development and age. Phys Ther. 1986;66(1):17.
- Piper MC, Pless IB. Early intervention for infants with down syndrome: A controlled trial. Pediatrics. 1980;65(3):463.
- Mahoney G, Robinson C, Fewell RR. The effects of early motor intervention on children with down syndrome or cerebral palsy: A field-based study. Journal of developmental and behavioral pediatrics : JDBP.
2001;22(3):153-162. doi: 10.1097/00004703-200106000-00001. - Hines S, Bennet F. Effectiveness of early intervention for children with down syndrome. Mental Retardation and Development. 1996;2:96-101.
- Hanson MJ. Twenty-five years after early intervention: A follow-up of children with down syndrome and their families. INFANTS YOUNG CHILD. 2003;16(4):354-365. https://auth.lib.unc.edu/ezproxy_auth.php?url=http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=2009023396&site=ehost-live&scope=site.
9 Responses to “Enhancing Motor Development in Children with Down Syndrome at Las Obras”
Chritina Aluri
Hi everyone!
We are all back from Guatemala, what an amazing, inspiring experience! I ended up doing my capstone presentation twice and providing consultation to a family with a child with DS at the school for children with disabilities in Alotenango. I first did my presentation in a very small group in the nursery with Katie, Sadye, Brit, and the Las Obras nursery and pediatric PT, Miriam. I added an introduction to my presentation in Spanish to show that I was making an effort to learn Spanish. They had a two year old boy with DS in the nursery that I got to work with. Although he was 2 years old, in terms of motor skills, he was at the level of a 3-4 month old! I learned that he had had septal wall heart surgery earlier. This presentation was very collaborative and we all exchanged ideas about managing low tone and optimizing positioning.
I then presented again for all of the Lab Obras PTs and PT techs, visiting PT students, and our students and leadership. The nursery doctor allowed the 2 year old with DS to leave the nursery and be part of my presentation, which really enhanced my presentation. As this was a larger group, there was less interactive dialogue and I used the time following my presentation to ask them about DS in Guatemala.
I received a lot of positive feedback and helpful suggestions for improving my presentation. Many of the therapists wanted more hands-on practice, functional activities, and images. I also learned what topics they would like our students to present in the future.
Overall, I am very pleased with my Capstone presentations and am grateful to everyone who helped me present in Guatemala! Thank you all!
Debbie Thhorpe
Christina
Very nicely done project. The information will be valuable to the therapists in Guatemala. I am anxious to see what kind of feedback that you receive from those therapists. You have packaged the information concisely and emphasized the most important points related to the care and intervention for children with Down syndrome. I am sure translation into Spanish took some time but will be well received. Good luck and I can’t wait to hear all the stories from your adventure!!
clshort
Hi Christina!!
I’d like to just echo everything that people have already said about your project! I told you in person already, but I especially love your handouts. I think they are very simple, straight-forward, and very informative. I too would love to use these for future reference. I also look forward to your presentation in Guatemala! Can’t wait!
Cassie
Chritina Aluri
Hi everyone! Thank you soo much for checking out my website and materials and for your positive feedback and thoughtful questions! I will address some of the questions that you posed in this post.
Britt, please save and use these educational materials as you see fit, especially if you have any Spanish speaking patients and families! I would love to see these materials help educate others.
Megan, I love your idea of having the PTs and PT techs working on the skills I have demonstrated in smaller groups. I think that this idea will encourage more participation and questions. My presentation should take about 30-40 minutes.
Kyle, I had originally wanted to make a PowerPoint to supplement my presentation, but technology is limited in this setting. I will be supplementing my presentation with demonstration of head movements to be avoided due to the possibility of AA, common abnormal movements, and strategies to discourage these movements and promote motor development. I will be presenting in English with a translator, as I unfortunately do not speak Spanish. I had my Spanish translations reviewed by fluent Spanish speakers and hope that there will be limited possibility for miscommunication. In terms of Guatemala beliefs pertaining to disability and rehabilitation, I sought that information to better my understanding of Guatemalan culture and to prepare for this experience. The beliefs that I listed in my reflection paper are more of the general population and not necessarily of the PTs and PT techs that I will be presenting to. I have used gait trainers and a variety of ADs and support tools in working with pre-ambulatory children with DS in the US and believe that these tools really improved their strength, coordination, balance, and access to their environment. I will continue to look for research about their benefit. Please let me know if your CI shares any of this information with you, i would love to see it! Unfortunately, resources are limited in Guatemala so I will be focusing my presentation and demonstration on hands on facilitation skills that do no rely on the use of specialized equipment.
Michelle, I will be doing a presentation about DS with Katie at the school for children with disabilities (they also requested more information about DS). This presentation will be very different as the children with DS at the school are older and generally ambulatory (vs. younger pre-ambulatory infants and toddlers at the Los Obras nursery) and the teachers and volunteers at the school have very little education about health and DS. I will be presenting basic information about DS and Katie will be presenting information about how to promote higher level motor skills (like running and jumping) and increased activity for these children. I also prepared a handout for this presentation. I did not post it on this site as it did not directly pertain to my Capstone presentation at Las Obras, but I will try to add it to this site.
Thanks again everyone for your questions and feedback! I can’t believe that I will be leaving tomorrow! I am very excited to have this opportunity! Remember to keep up with our adventure on the blog!
llemmons
Hi Christina,
I’m very excited to see the delivery of these materials first hand in Guatemala. While studying for the comp exam, I could not recall the management for atlanto-axial instability in this patient population, so this project will be very helpful for me! I am excited to see how the staff of Las Obras respond to your treatment ideas and am excited to utilize your ideas myself. I think this will be especially helpful for parent/caregiver education. I thought your use of pictures aided in both the professional presentation of your materials, but also in the ease of understanding of your ideas. I am curious if you have prepared any patient education materials for use in this population, or if these handouts are intended for any other audience in addition to therapists and support staff in Guatemala. Great work and thanks for the very useful tool! I anticipate a career in an acute care setting, so understanding medical management of all patient populations will be important. These tools are definitely something I would like to hold onto.
Kyle Hoppes
Christina,
Your project looks great and I think the handouts provide a professional appearance, are easy to read, and produces information in a manor that can quickly be referenced. I have just a few questions about your plan/project for when you are in Guatemala.
1. Will you be presenting the handouts in addition to a powerpoint?
2. What will your demonstration consist of? Will it be the preferred postures, positions, etc.?
3. Will you be presenting the information in Spanish or English? Or will you be using a translator?
4. Are there any challenges with translation of the material that could complicate communication and its effectiveness?
5. You mention that intervention for disability is not necessary a belief in Guatemala, how do you factor in these beliefs within your project?
6. Have you learned anything about increasing mobility in children prior to ambulation? My CI was big into providing children with a means of mobility as an early intervention strategies and stated that research is showing positive outcomes in this area.
Sorry for all the questions but I think you have a great topic and project here, just want to know more.
Thanks,
Kyle
Megan E.
Christina,
Great project! I cannot wait to see it live!! I agree with everything Betsy and Britt mentioned about the clinical usefulness of the material in the handouts. I wanted to comment about how well you integrated the health literacy concepts as well as cultural sensitivity into your materials. When it comes to patient education I too have the tendency to provide more verbal and written information than less. I think you did an excellent job of using concise and direct language in your handouts, which also have a pleasing aesthetic. I think that supplementing your verbal presentation and written materials with hands-on practice is an excellent idea especially because of the innate cultural and language barriers that will exist between you and your audience. I think that breaking out into small groups to practice the techniques will decrease the formality of the learning environment and may bring about more questions and better overall understanding by Guatemalan PT and PT techs. I am sure we will learn a lot from them too! Maybe I missed this, but long do you anticipate your presentation will be?
Great job Christina!
Megan E.
tjbritt
Christina,
Great project!! I enjoyed reviewing your hand out as they are neat, short, but provide a wealth of knowledge about Down Syndrome. The pictures also correlate nicely to provide useful supplement. Since I am interested in pediatrics as well, I know there is an increased likelihood I will encounter children with Down syndrome. These handouts will not only be beneficial to the therapists in Guatemala, but for clinics in NC (and VA ☺ ). Can I share (keep for my own reference)? I particularly loved the “suggested activities” component on your second handout. Many times as a student we have all recognized the impairments, but trying to think of “how to correct that” can be more difficult. This is super clear-cut and easy to implement!
Since I am going to Guatemala I will be very excited to see your presentation. I think you will be afforded a unique and rewarding opportunity to provide these educational materials to the PT’s in this clinic! As you mentioned in your reflective essay many Guatemalans have limited education on disability (physical and mental, and often confuse the both). I am glad the PT’s down there showed a special interest in DS.
See you Tuesday bright & early,
Britt
bfred36
Christina,
This topic is very near and dear to my heart because my cousin, who has come to ALL of my sporting events, has Down Syndrome. Fortunately, his mother is a nurse and knew where to access resources to aid in his motor development. I think your capstone is wonderful in that you assessed a need through feedback from the staff in Guatemala and are fulfilling that need! I especially like your 3rd handout about the skill development in children with Down Syndrome. It will provide a nice reference tool for the therapists to have in Guatemala as well as will be able to help them figure out if something else is going on if these developmental milestones are not met within a reasonable amount of time. I also think the abnormal movement patterns portion of your handouts is extremely important. I did not know that there were common abnormal movements but am now aware, through your handout, that there are suggested activities to combat these movements.
As you know, I am going to Guatemala as well and am looking forward to sharing information that I know and learning from the therapists there. I know they will benefit from the information that you will provide to them. I hope to be able to attend your presentation!
Betsy