Improving Parental Understanding and Comfort to Care for Children with Spina Bifida: An Audiovisual Educational Tool

Problem/Background: Spina bifida (SB) is a neural tube defect that occurs during the first month of development of the fetus in which the spinal column does not form normally. Through informal feedback from parents of children with SB and local Spina Bifida Clinic (SBC) providers, due to the overwhelming nature of the SB prenatal visit, parents are unable to retain important education. The following question could be asked: would an audiovisual educational tool improve parental understanding and comfort to care for their child with SB? Methods: By conducting a needs assessment survey, parental input was directly incorporated into the audiovisual educational tool. The completed tool was a 24-minute video to be used in addition to the current SB prenatal educational process. The tool was then tested through a pilot program with a pre-intervention and post-intervention survey. The pilot program consisted of one parent in the prenatal education phase (has not yet had their child) and one parent in the postnatal education phase (has had their child). The pre- and post-intervention surveys were compared to determine if the educational tool was helpful in improving parental understanding and comfort to care for their child with SB. Results: The needs assessment survey yielded 12 completed responses. In the pilot program of the educational tool, there was one prenatal phase parent and one postnatal phase parent who responded to both the pre-intervention and post-intervention surveys (n=2). It was found that the audio visual educational tool did clinically retain parental understanding and improved parental comfort to care for their children in the pilot phase of the project. Conclusions: The pilot project shows promise that an audiovisual educational video would indeed be an effective tool to disseminate information to parents expecting a child with SB. By providing an additional source of information in a new audiovisual format, parental understanding was retained and parents had improved confidence to care for their child. Keywords: Spina Bifida, education of parents, supplemental education for parents, audiovisual education materials.

Running Head: AN EDUCATIONAL TOOL FOR SPINA BIFIDA Improving Parental Understanding and Comfort to Care for Children with Spina Bifida: An Audiovisual Educational Tool Laura Holden RN, BSN, FNP-DNP Student University of Utah College of Nursing 1 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 2 Abstract Problem/Background: Spina bifida (SB) is a neural tube defect that occurs during the first month of development of the fetus in which the spinal column does not form normally. Through informal feedback from parents of children with SB and local Spina Bifida Clinic (SBC) providers, due to the overwhelming nature of the SB prenatal visit, parents are unable to retain important education. The following question could be asked: would an audiovisual educational tool improve parental understanding and comfort to care for their child with SB? Methods: By conducting a needs assessment survey, parental input was directly incorporated into the audiovisual educational tool. The completed tool was a 24-minute video to be used in addition to the current SB prenatal educational process. The tool was then tested through a pilot program with a pre-intervention and post-intervention survey. The pilot program consisted of one parent in the prenatal education phase (has not yet had their child) and one parent in the postnatal education phase (has had their child). The pre- and post-intervention surveys were compared to determine if the educational tool was helpful in improving parental understanding and comfort to care for their child with SB. Results: The needs assessment survey yielded 12 completed responses. In the pilot program of the educational tool, there was one prenatal phase parent and one postnatal phase parent who responded to both the pre-intervention and post-intervention surveys (n=2). It was found that the audio visual educational tool did clinically retain parental understanding and improved parental comfort to care for their children in the pilot phase of the project. Conclusions: The pilot project shows promise that an audiovisual educational video would indeed be an effective tool to disseminate information to parents expecting a child with SB. By AN EDUCATIONAL TOOL FOR SPINA BIFIDA providing an additional source of information in a new audiovisual format, parental understanding was retained and parents had improved confidence to care for their child. Keywords: Spina Bifida, education of parents, supplemental education for parents, audiovisual education materials. 3 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 4 Improving Parental Understanding and Comfort to Care for Children with Spina Bifida: An Audiovisual Educational Tool Spina Bifida (SB) is a neural tube defect that occurs during the first month of development of a fetus. The spinal column and/or the spinal cord do not form correctly. This malformation may lead to a variation of congenital defects including: spina bifida occulta, meningocele, or myelomeningocele (Spina Bifida Association (SBA), 2015). In the United States, every 1 in 1000 babies born will have Spina Bifida (SBA, 2015). In Utah, if a fetus is suspected to have SB upon fetal ultrasound, the family is referred to the Spina Bifida Clinic (SBC) at a large academic pediatric hospital in the Intermountain West. Using a multidisciplinary approach with experts at a large academic Maternal Fetal Medicine Clinic, the SBC seeks to educate parents through a prenatal office visit. During this visit, the parents are introduced to their child's specific SB diagnosis (level of spinal defect), prognosis, and to the care management that their child will likely need (Intermountain Healthcare, 2018). At the end of the prenatal visit, the SBC gives the parents a binder full of written educational materials to use as a current and future reference. Yet, upon informal feedback from parents and providers at the SBC, parents have poor retention of the information provided to them in the prenatal visit. This may be the result of the overwhelming nature of preparing to have a child with a congenital defect. Additionally, the family has most likely already had extra medical visits, numerous diagnostic imaging sessions, and is in the process of physically and mentally preparing their home and family for a new baby that will have extra needs. As education of parents is of most benefit to the child, the following question could be asked: would an additional audiovisual educational tool provided by SBC be a more effective way to disseminate information to these overwhelmed parents? Would such an AN EDUCATIONAL TOOL FOR SPINA BIFIDA 5 audiovisual educational tool improve parental understanding and comfort to care for their child with SB? Literature Review Little information has been documented in the literature regarding the best manner to educate parents of children with SB specifically. However, borrowing concepts studied in populations with other congenital defects, valuable information can be gleaned. Badiu et al. (2017) found that if patients co-created educational material with clinicians, the quality of the written or online material improved. Costa et al. (2016) found that using a multimedia educational tool was most beneficial in optimizing the knowledge of caregivers of children with cleft lip and palate. Hong-Gu et al. (2014) found that educational video interventions were a cost-effective method of educating parents regarding post-operative pain management. These are important concepts that need to be applied in the development of this project and a SB audiovisual educational tool. In multiple studies, the mode of supplemental visual education varies. However, the benefits of video educational tools appear consistent. Simeone et al. (2017) specifically studied the efficacy in alleviating parental anxiety by testing different modes of an educational intervention in parents of children with congenital defects. They found that parents who received a visual interactive educational session were less anxious compared to those who received other forms of the educational tool (Simeone et al., 2017). Similarly, Engels et al. (2013) studied how to educate parents of children with diaphragmatic hernia and found that offering supplemental educational information online improved parental education compared to those educated in a clinical setting alone. Chartrand, Tourigny and MacCormic (2016) found a DVD distribution of visual educational material regarding how a parent may help their child post-operatively not only AN EDUCATIONAL TOOL FOR SPINA BIFIDA 6 improved parental understanding, but also decreased the child's need for pain management. Despite different manners of distributing the audio visual educational tool, the benefits to parents and children are well documented. Nursing Theory Framework and Rationale The Precaution Adoption Process Model (Glanz & Rimer, 2005) was used to help design the structure of this project. This nursing theory includes a 7-stage process in which a participant progresses from an unaware state to an informed state of mind (see Appendix A). This model has been useful as the goals of this project deal with altering the thought processes of the parent participants. By critically analyzing each stage of the thought process, the project was prepared to understand factors that may influence the retention of the SB education. Study Aims The purpose of this project and report was to determine if parental understanding and comfort to care for their child with SB improved by offering an educational audiovisual video tool. Methods Context A large academic pediatric hospital in the Intermountain West was the location for this project. The SBC providers have a long-standing relationship with families of children with SB. The SBC works as an interdisciplinary team involving: neurologists, neurosurgeons, pediatricians, urologists, orthopedists, orthodontists, nurse practitioners, nurses, psychologists, and occupational and physical therapists. The SBC has a prenatal visit with expecting families suspected to have SB. This visit typically takes place between 19-23 weeks of pregnancy after detailed imaging has been completed. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 7 Intervention The intervention was designed to reflect information in the current written educational binder called, "The Spina Bifida Family Notebook" distributed by the local SBC (Intermountain, 2018). The audiovisual educational tool was produced in a PowerPoint format with voiceover. The intervention included 17 visual slides and approximately 24 minutes of audio voiceover narration. The educational tool was developed with the assistance of a local provider in the SBC with years of experience caring for SB families. The intervention mirrors the content and order of the written material and references sections in the written binder. This was done to create a cohesive and sustainable product to be used in conjunction with current educational material. Topics discussed include: a general introduction to SB; a brief discussion of the cause of SB; how parents will help their newborn or toddler on a daily basis; specialty of care provided by neurosurgery, orthopedics, and urology; developmental concerns; how to care for their child after surgery; and lastly, general health concerns with children with SB. The educational tool highlights areas that were reported by parents of SB children on the needs assessment survey as areas of poor retention or needing further education. Study of Interventions To assess the impact of the current educational process, a needs assessment survey of parents of previous SB patients was conducted (see Appendix B). Then, in the pilot phase of the project, a pre-intervention with paired post-intervention survey was conducted (see Appendix C). Identified participants for the pilot program were three prenatal parents of a newly diagnosed SB patients and a single recent postnatal parent with current experience. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 8 The needs assessment survey was designed to help tailor the development of the educational tool regarding specific topics for which previous parents felt they needed further education. Survey questions were developed with approval of local experts caring for SB infants and children. The pre-intervention and post-intervention survey directly compares (via paired testing and Likert scale) if parents thought the educational video intervention was helpful in improving parental understanding and comfort to care for their child. Measures In order to accomplish the project's aim to determine if parental understanding and comfort to care for their child with SB was improved by offering an audiovisual educational tool, first a formal needs assessment was completed. A Redcap needs assessment survey (see Appendix B) was emailed to parents of children prenatally diagnosed and seen at the SBC at a local large academic pediatric hospital in the Intermountain West for a prenatal visit in the last four years. The survey was also distributed on a local SB social media site. This survey used a Likert Scale to determine how parents felt they retained information from the prenatal education visit, what they wished they had been educated on further, and how they would prefer to access an additional educational tool. 16 total responses were received, three were incomplete, and one was not seen at the SBC for a prenatal visit. Thus 12 valid needs assessment responses were analyzed. The outcomes of this survey demonstrated the necessity of further development of the audiovisual educational tool. The educational tool was developed with the assistance of local experts, responses from the needs assessment surveys and from the written educational binder provided in the prenatal visit at the SBC. The tool was a PowerPoint presentation with voiceover and was distributed via AN EDUCATIONAL TOOL FOR SPINA BIFIDA 9 YouTube according to the preferences voiced by the parents through the needs assessment survey. The educational tool was then piloted on two different groups of parents, one parent currently pregnant with a fetus newly diagnosed with SB (prenatal phase) and one parent who has had their child with SB and could recognize usefulness of information (postnatal phase). Parents were emailed a Redcap survey link of the pre-intervention survey (see Appendix C) and the link to the audiovisual educational tool on YouTube. This survey was, again, a Likert Scale based assessment discussing their perceived retention of education presented and how comfortable they felt to care for their new child with SB. Three days after the initial completion of the pre-intervention survey and after viewing the educational tool, the post-intervention survey (see Appendix D) was emailed to each participant. This post-intervention survey directly assessed parent's perceived understanding of SB and how comfortable they felt to care for their new child with SB with the addition of the audiovisual education tool to the current standard prenatal educational tools and processes. Pre-intervention and post-intervention surveys were compared and extrapolated to assess the effect of the educational video tool upon parental understanding of education and parental comfort to care for their child with SB. Survey responses were monitored daily throughout the pilot project for incomplete data entry. The development of the surveys and educational video tool was completed by a graduate nurse practitioner student in conjunction with local SB experts. Time and efforts were donated. The educational tool was made available on YouTube. Thus, making the surveys, educational tool, and project low-cost and sustainable. Analysis AN EDUCATIONAL TOOL FOR SPINA BIFIDA 10 In this project, both quantitative and qualitative data were collected. Data was gathered in two different sessions of surveillance. The first session of surveying was through the needs assessment, in which parents of patients diagnosed with SB within the last four years were asked to reflect back on their educational experiences. The second session of surveying was during the pilot portion of the project and was completed as a pre-intervention survey and post-intervention survey for parents in the prenatal phase or recent postnatal phase. Quantitative data included on both sessions of surveillance were analyzed using frequency or descriptive statistics. For analysis of the needs assessment, pre-intervention and post-intervention surveys data, descriptive statistics were used to define current outcomes and demographics of participants. As the quantity of pre-intervention and post-intervention surveys was dependent on the quantity of new SB diagnoses in the project location during the time constraints of the pilot program, no further statistical analysis could be made at this time. Qualitative data was collected by a limited number of open-ended questions in both sessions of surveillance. Content analysis of open-ended question responses were read word for word and then coded. The coded data were then categorized, organized and summarized. Ethical Considerations This project was determined to be a non-human subjects research by the University of Utah Institutional Review Board. Risks were noted to be minimal throughout the project. Consent was obtained voluntarily on each survey. Results Needs Assessment Results The needs assessment survey had 16 responses as the result of emailing current patients of the SBC and from contact through local social media for SB families. Of the 16 responses, AN EDUCATIONAL TOOL FOR SPINA BIFIDA 11 three responses were incomplete and one did not attend the local SBC for a prenatal visit. Thus, the survey yielded 12 valid responses to analyze. General demographics were collected to assess other contributing factors to parental understanding and comfort to care for a child with SB. The mean maternal age of respondents was 28.4 years (n=12). The average number of children prior to their child with SB was 0.92 children (n=12) (see Table 1a). One hundred percent of respondents reported being married (see Table 1b). When questioned regarding highest level of education obtained, responses demonstrated a considerably educated population, 66.7% (n= 8) were college graduates and 33.3% (n=4) reported some college or post high school training (see Table 1b). The frequency of age of their SB child currently was fairly equally distributed, from less than 1 year of age to no older than 4 years of age (see Table 1b). The Graph 1 (n=12) Understanding of SB PRIOR to Prenatal Visit Compared to AFTER Prenatal Visit with Standard Education median location of spinal defect was L4 (see The needs assessment was very helpful in assessing parental understanding prior to and after the prenatal visit. The median Likert response for understanding of SB prior to any prenatal education was Number of Responses Table 1b). 7 8 6 4 2 0 3 4 3 0 Stongly Disagree 0 Disagree 1 2 Neither Disagree or Agree 3 1 Agree Strongly Agree Understanding of SB Prior to Prenatal Visit Understanding of SB After Prenatal Visit between disagree and neither disagree or agree. This was related to a bimodal response. Whereas, the Likert response for understanding of SB after the prenatal visit was agree; a significant increase from prior understanding (see table 1c). This is further demonstrated in Graph 1. Despite high levels of confidence regarding understanding of SB, 90.9% (n=11) of parents thought an audiovisual educational video tool AN EDUCATIONAL TOOL FOR SPINA BIFIDA 12 would be helpful (see Table 1e & Graph 2). The majority of parental responses preferring YouTube determined the manner used to distribute the educational tool (see Graph 3). Furthermore, four specific themes, diagnoses or cares parents may need to help their SB child with and which were possible areas of improvement, were identified. Based on lower parental confidence via the Likert Scale (see Table 1d) and statements made in the qualitative section of the needs assessment, these four diagnoses and cares were: 1) urinary tract infection signs and symptoms (bladder management), 2) bowel management, 3) early developmental intervention and 4) orthopedic management. Thus, these topics were highlighted in the audiovisual educational tool along with critical areas of care of children with SB such as hydrocephalus, shunt malfunction, and Chiari Malformation. Additional qualitative themes identified by the needs assessment survey were centered around themes of feeling overwhelmed and emotional. This demonstrated that local parents of SB children not only wanted additional information after their prenatal visit, but they wanted reassurance of the "normal" aspects of their child. This concern of normality of their child, expressed by parents, was not previously recognized by the SBC providers. Thus, endeavors were made to ensure the educational tool had an overall positive and reassuring tone. Lastly, qualitative responses requested further education regarding how to care for their newborn after surgery. Hence, a special section was included regarding newborn surgery and general cares of children with SB. The audiovisual educational tool, patterned to reflect the findings from the needs assessment survey, was then approved by content experts at the local SBC. It was at this point during the project that the researcher found that the general SB information available to discuss was too extensive and was largely dependent on the developmental age of the child. Thus, the AN EDUCATIONAL TOOL FOR SPINA BIFIDA 13 researcher concluded that this educational video would focus on caring for and recognizing possible problems related to SB from the newborn phase to the toddler phase of development. Pre-Intervention and Post-Intervention Pilot Project Results Three possible new prenatal phase parents were identified that qualified for piloting of the project. After consent, a single prenatal phase parent was implemented into the pilot project, which involved using the audiovisual educational tool in addition to the standard prenatal educational process. The new prenatal parent was asked to complete the pre-intervention survey within three weeks after the initial prenatal visit at the local SBC but, importantly, prior to viewing the educational tool. The researcher then encouraged viewing the educational tool and completing the post-intervention survey within 3-7 days. Reminder emails and phone calls were used to encourage completion of the surveys and viewing of the educational tool. The demographics of the prenatal phase and postnatal phase pilot participants were similar to those in the needs assessment. The prenatal phase participant reported a maternal age of 30, married, college graduate, two children prior to their child with SB and an L5 suspected spinal defect. The postnatal phase participant reported a maternal age of 32, married, college graduate, 1 child prior to SB and a known L1 spinal defect (see Table 2a). As there were only single participants in both of the two pilot groups, the researcher was unable to statistically analyze the paired pre-intervention and post-intervention surveys. However, there appears to be an overall improvement in parental comfort to care for their child with SB and likely clinical significance seen in both the prenatal phase participant's responses as well as the postnatal participant's responses (see Graph 4). The prenatal phase participant reported the same Likert response of "agree" for both their pre- and post-intervention response regarding their overall understanding of SB. However, regarding their overall parental comfort to AN EDUCATIONAL TOOL FOR SPINA BIFIDA 14 care for their child, the prenatal phase participant changed from a Likert response of "disagree" to "neither disagree or agree" (see Table 2b). Similarly, the postnatal phase participant reported the same Likert response of postnatal phase respondent Postnatal Phase Participant Overall Comfort to Care for SB Strongly Disagree increase in Likert scale of the Postnatal Phase Participant Overall Understanding of SB regarding their comfort to care for Strongly Agree understanding of SB. And again, an Prenatal Phase Participant Overall Comfort to Care for SB Agree regarding their overall Prenatal Phase Participant Overall Understanding of SB Neither Disagree or Agree post-intervention response Graph 4 Pre-Intervention vs Post-Intervention in Pilot Program Disagree "agree" for both their pre- and their child with SB in was seen, moving from "neither disagree or Pre-Intervention Post-Intervention agree" to "agree" (see Table 2d). When the two pilot groups were compared, a retention of understanding of SB is seen and an increase in overall parental confidence and comfort to care for their child with SB (see Graph 4). As with the needs assessment, the researcher asked the pilot groups whether their child was suspected or known to have a number of specific, common diagnoses associated with SB including: Chiari Malformation, hydrocephalus, urinary management needs, bladder management needs, and likely needing assistance with development. Then the parent was asked if they felt prepared to care for such diagnoses. Interestingly, the prenatal phase parent reported her child not being diagnosed with any of the diseases, but that she felt either improved or the same regarding caring for these diagnoses after viewing the educational tool (see Table 2c). Contrarily, the postnatal phase parent reported their child having all of the diagnoses, yet found AN EDUCATIONAL TOOL FOR SPINA BIFIDA 15 the educational tool unhelpful in improving their preparedness to care for such diagnoses (see Table 2e). Additionally, the following comment was made by the postnatal parent: "I'm glad to have watched the video, however, it served more as a reminder than new or further information". Discussion Summary Through the 12 completed responses of the needs assessment survey, a substantial desire from parents was expressed for an audiovisual educational tool to supplement and use as an electronic reference after the SBC prenatal visit. In the pilot program of the educational tool, the one prenatal phase parent and one postnatal phase parent, both reported that the educational tool reinforced current understanding of SB and improved comfort to care for a child with SB. Interpretation Unfortunately, the researcher was unable to statistically analyze the pre-intervention survey to the post-intervention survey in the small pilot program (n=2) as the result of the low number of respondents during the time constraints of the project. However, it was still pertinent to compare the pre-intervention and post-intervention survey results between the two pilot groups. It is interesting that the prenatal phase parent did not either understand or anticipate that their child would have any of the common diagnoses screened for in the pre-intervention survey. Whereas, the postnatal parent reported their child having all of the specific diagnoses. This could be a variant related to level of spinal defect and variance between cases; however, this could also be an indicator that the prenatal parent did not understand the likelihood or eventuality of these specific diagnoses. Additionally, did the postnatal parent, who commented that the educational tool was not significantly helpful in improving care for the specific diagnoses, express that sentiment because they had experience? This may be reflected in the comment left by the AN EDUCATIONAL TOOL FOR SPINA BIFIDA 16 postnatal parent, indicating that they already had the chance to practice and become prepared prior to viewing the educational tool. The researcher was able to find that overall parental confidence and comfort to care for their child with SB improved more than overall understanding of SB with the educational tool. This could be related to the overall success of the prenatal visit regarding educating what SB is. Yet, caring for a child with SB is the overwhelming portion of the prenatal educational process. An improvement was seen with the educational tool in this area. This demonstrates the great potential of the audiovisual educational tool. Additionally, a significant strength of the project was the ability to incorporate the findings from the needs assessment directly into the educational video tool. The researcher believes this allowed a more significant and personal impact of the educational tool on the parents of SB children. The results appear to echo the findings of Simeone et al. (2017) and Engels et al. (2013) regarding improvement of parental understanding of specific diagnoses through electronic or visual educational tools. However, through the needs assessment it was found the parents preferred an online source rather than a DVD source, as was found by Chartrand, Tourigny & MacCormic (2016). The project not only impacted the targeted local parents, and therefore children with SB, but also impacted the interdisciplinary teams of the SBC by addressing particular areas of education pertaining to individual care specialties. The researcher also believes there is an impact on the local SB community as a whole by surveying for improvement regarding education and presenting the audiovisual educational tool on a public site. This opens the discussion about improving the educational systems of many specific congenital diseases through using online audiovisual means. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 17 One challenge that was faced with the project was whether the researcher should work independently with the SBC or with the overall healthcare system, including the local hospital's educational department. The surveys were conducted independent of the healthcare system which allowed for information to be collected that showed the necessity of an audiovisual educational tool (see graph 2). The researcher hopes to be able to work with the educational department team of the local healthcare system in the future to help produce a polished professional educational video tool rather than a PowerPoint with voiceover. Attempting to work with the local healthcare corporate educational team did cost the project time and possibly a loss of prenatal phase participants. Though the project was time intensive for the researcher, the benefit to SB parents is apparent and will be long lasting. Additionally, the audiovisual educational tool is sustainable in its current form. Limitations The researcher acknowledges the limitations of this project to include the following: surveys were conducted in a written English format, limiting responses, especially related to the pilot project of implementing the educational tool; limited geographic area of implementation related to location of the local SB clinic service area; and increased awareness or retention of education due to increased surveillance. The researcher also acknowledges the limitation of the data regarding the overall small sample size and time constraints. The researcher also acknowledges there may be some limitations to generalizability to the general population as the project targeted parents of patients. However, the project findings are likely generalizable to the education of parents of other congenital disease populations and parents of the typical pediatric population. One attempt to control confounding of the pilot program pre-intervention and post-intervention surveys was to complete the post-intervention AN EDUCATIONAL TOOL FOR SPINA BIFIDA 18 survey within three weeks of the prenatal visit and within one week of the parent's viewing of the audiovisual educational tool. The researcher additionally acknowledges that the information available to discuss regarding SB is vast. This project was thus limited to the educational tool of the newborn to toddler phase of development. However, future development of a school age video may be helpful for SB parents. Conclusions The researcher feels the project has and will continue to improve the education of parents caring for children with SB, and simultaneously improving care and comfort levels. The pilot project was successfully tested in a small population. Additionally, the project has demonstrated its sustainability and it will continue to be implemented including the usage of the audiovisual tool and collecting further data. The project findings address the education of parents of children with congenital diseases, an area lacking in the current literature. The findings of this project have demonstrated that parents of congenitally affected children not only desire additional resources of education via an electronic and audiovisual format, but parents also desire to be comforted and reassured of the normalcy and happiness of their child. The researcher recommends that other providers caring for congenitally affected children research ways to improve their educational processes by considering electronic and audiovisual means and publicize findings in the literature. Acknowledgement The researcher acknowledges the advisement, assistance and expertise of Jennifer Hamilton, APRN, DNP, CPNP-PC and Paula Peterson, RN, MS, PNP. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 19 References Badiu, C., Bonomi, M., Borshchevsky, I., Cools, M., Craen, M., Ghervan, C. … Dwyer, A. (2017). Orphanet Journal of Rare Diseases, 12(57), 1-9. Brustrom, J., Thibadeau, J., John, L., Liesmann, J., & Rose, S. (2012). Care Coordination in the Spina Bifida Clinic Setting: Current Practice and Future Directions. Journal of Pediatric Health Care, 26(1), 16-26. doi:10.1016/j.pedhc.2010.06.003 Cady, R., Erickson, M., Lunos, S.,Finkelstein, S., Looman, W., Celebreeze, M., & Garwick, A. (2015). Meeting the Needs of Children with Medical Complexity Using a Telehealth Advanced Practice Registered Nurse Care Coordination Model. Maternal Child Health Journal, 19(7), 1497-1506. doi:10.1007/s10995-014-1654-1. Chartrand, J., Tourigny, J. & MacCormick, J. (2016). The effect of an educational pre-operative DVD on parents' and children's outcomes after a same-day surgery: a randomized controlled trial. Journal of Advanced Nursing, 73 (3), 599-611. doi: 10.1111/jan.13161 Cockayne, R., Gibbon, F., & Leach, P. (2012). Neurosurgical input at pre-natal counselling for parents of babies with Spina bifida. British Journal of Neurosurgery, 27(2), 167-170. doi:10.3109/02688697.2012.722704 Costa, T.L., Souza, O.M.V., Carneiro, H.A., Chiquito Netto, C., Pegoraro-Krook, M.I., Dutka, J.C.R. (2016). Multimedia material about velopharynx and primary palatoplasty for orientation of caregivers of children with cleft lip and palate. CoDAS 28(1), 10-16. DOI: 10.1590/2317-1782/20162014126. Engels, A., DeKoninck, P., van der Merwe, J., Mieghem, T., Stevens, P., Power, B. … Deprest, J. (2013). Does website-based information add any value in counseling mothers AN EDUCATIONAL TOOL FOR SPINA BIFIDA 20 expecting a baby with severe congenital diaphragmatic hernia? Prenatal Diagnosis, 33, 1027-1032. Fairman, A. D., Dicianno, B. E., Datt, N., Garver, A., Parmanto, B., McCue, M. (2013). Outcomes of Clinicians, Caregivers, Family Members and Adults with Spina Bifida Regarding Receptivity to use of the iMHere mHealth Solution to Promote Wellness. International Journal of Telerehabilitation, 5(1), 3-16. de Graaf, M., Knol, M., Totte, J., Os-Medendorp, H., Breugem, C., & Pasmans, S. (2014). Elearning enables parents to assess an infantile hemangioma. The American Academy of Dermatology, 70(5), 893-898. http://dx.doi.org/10.1016/j.jaad.2013.10.040 Glanz, K., & Rimer, B. K. (2005). Theory at a glance: A guide for health promotion practice (053896). Bethesda, Md.: U.S. Dept. of Health and Human Services, National Cancer Institute. Goossens, E., Fieuws, S., Van Deyk, K., Luyckx, K., Gewillig, M., Budts, W., & Moons, P. (2015). Journal of Pediatrics, 166(6), 1370-1377. He, H.-G., Zhu, L., Chan, W.-C.S., Xiao, C., Klainin-Yobas, P., Wang, W., Cheng, K.F.K. & Luo, N. (2015) A randomized controlled trial of the effective- ness of an educational intervention on outcomes of parents and their children undergoing inpatient elective surgery: study protocol. Journal of Advanced Nursing 71(3), 665-675. doi: 10.1111/jan.12521 Intermountain Healthcare. (2018). Spina Bifida Clinic. Retrieved from https://intermountainhealthcare.org/locations/primary-childrens-hospital/medical services/brain-and-spine-care/brain-and-spine-programs/spina-bifida/ AN EDUCATIONAL TOOL FOR SPINA BIFIDA 21 Jackson, A., Liang, R., Frydenberg, E., Higgins, R., & Murphy, B. (2016). Parent education programmes for special health care needs children: A systematic review. Journal of Clinical Nursing, 25(11-12), 1528-1547 Johansen, H., Dammann, B., Andresen, I. & Fagerland, M. (2013). Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two. Health and Quality of Life Outcomes, 11(152), 1-7. http://www.hqlo.com/content/11/1/152 Kupst, M. J., Blatterbauer, S., Westman, J., Schulman, J., & Paul, M., H. (1977). Helping parents cope with the diagnosis of congenital heart defect: An experimental study. Pediatrics, 59(2), 266- 272. http://pediatrics.aappublications.org/content/59/2/266 Simeone, S., Pucciarelli, G., Perrone, M., Rea, T., Gargiulo, G., Dell'Angelo, G., … Vosa, C. (2017). Comparative Analysis: Implementation of a Pre-operative Educational Intervention to Decrease Anxiety Among Parents of Children With Congenital Heart Disease. Journal of Pediatric Nursing, 35, 144-148. http://dx.doi.org/10.1016/j.pedn.2017.01.008 Ulus, Y., Tander, B., Akyol, Y., Ulus, A., Tander, B., Bilgici, A., . . . Akbas, S. (2012). Functional disability of children with spina bifida: Its impact on parents' psychological status and family functioning. Developmental Neurorehabilitation, 15(5), 322-328. doi:10.3109/17518423.2012.691119 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 22 Appendix A Nursing Theory Framework and Rationale: The Precaution Adoption Process Model (Glanz & Rimer, 2005). Stage 1 • Unaware of poor retention of Spina Bifida education Step 2 • Unengaged by Issue • Not concerned about poor retention of education Step 3 • Deciding about viewing Spina Bifida Educational Video Step 4 • Decided not to watch Spina Bifida Educational Video Step 5 • Decided to watch Spina Bifida Edcuational Video Step 6 • Watched Educational Video • Improved retention of Spina Bifida Education Step 7 • Aware of additional Spina Bifida education resources AN EDUCATIONAL TOOL FOR SPINA BIFIDA 23 Appendix B Spina Bifida Needs Assessment Survey Thank you for being willing to participate in our improvement project for the Spina Bifida Education Process. There are 3 parts to this survey. Please complete all aspects of the survey unless prompted otherwise. Again, Thank you! Consent You are being asked to contribute a DNP project through a survey regarding the educational process you participated in when your child was first diagnosed with Spina Bifida. Before you decide, it is important for you to understand why the survey is being done and what it will involve. The purpose of this DNP project is to improve parental understanding and comfort to care for their child with Spina Bifida by offering an educational introductory video. Your participation will be complete as you finish this survey. The risks of this survey are minimal but may include feel upset thinking about or talking about personal information related to your previous education experiences. There are no direct benefits for taking part in this survey. However, we hope the information we get from this survey may help develop a greater understanding of the educational needs for families of children with Spina Bifida in the future. Your name will not be kept with your responses from the survey. In publications, your demographic information will be displayed anonymously. If you are injured from being in this study, medical care is available to you at the University of Utah or Primary Children's Hospital as it is to all sick or injured people. The University of Utah and Primary Children's Hospital (if applicable) has not set aside any money to pay the costs for such care. The University and Primary Children's Hospital will work with you to address costs from injuries. Costs would be charged to you or your insurance company (if you have insurance), to the study sponsor or other third party (if applicable), to the extent those parties are responsible for paying for medical care you receive. Since this is a research study, some health insurance plans may not pay for the costs. By signing this consent form you are not giving up your right to pursue legal action against any parties involved with this research. The University of Utah is a part of the government. If you are injured in this study, and want to sue the University or the doctors, nurses, students, or other people who work for the University, special laws may apply. The Governmental Immunity Act of Utah is a law that controls when a person needs to bring a claim against the government, and limits the amount of money a person may recover. See sections 63G -7-101 to -904 of the Utah Code. Research studies include only people who choose to take part. You can tell us that you don't AN EDUCATIONAL TOOL FOR SPINA BIFIDA 24 want to be in this study. You can start the study and then choose to stop the study later. We will still give you medical care and answer any questions you have. Your decision will not affect your relationship with your doctor or the study team in any way. If you do not want to be in the study or want to stop being in the study, you will not receive a penalty and you will not lose any benefits. Your decision will not affect your relationship with the researcher or the study team in any way Thank you for taking an interest in approving the education of families with children with Spina Bifida. Do you consent to participating in the Spina Bifida Needs survey? Yes No What is your primary language? English Spanish Other Demographics Maternal age when delivered child with Spina Bifida? Marital status at time of birth of child with Spina Bifida? Married Partnered Single Parent Other What is the highest level of education you obtained? Some High School
High School Graduate
Some College or Post High School Training College Graduate
Other Number of children prior to child with Spina Bifida 0
1
2
3
4 or more How old is your child with Spina Bifida now? Less than 1 year
1 year old
2 years old
3 years old
Older than 4 years old Prenatal Visit Location Did you attend a prenatal visit at The Spina Bifida Clinic? Yes
No, attended elsewhere
No, referred to The Spina Bifida Clinic after birth Never attended Spina Bifida specific prenatal visit Level of Spinal Bifida AN EDUCATIONAL TOOL FOR SPINA BIFIDA 25 At what spinal level is your child with Spina Bifida affected? __________________________________ Spina Bifida Needs Assessment Data- Quantitative Please complete part 2 of the survey below. Thank you! Understanding of Spina Bifida PRIOR to prenatal visit How well did you feel you understood Spina Bifida and the care your child may need PRIOR to your prenatal visit? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree How did you gain information about Spina Bifida PRIOR to your prenatal visit? Internet searching
Spina Bifida Association Website Friends or family members Social Media
Library or Books on Spina Bifida Other Where did you find the most valuable information regarding Spina Bifida and how to care for your child PRIOR to your prenatal visit? Understanding of Spina Bifida AFTER prenatal visit How well did you feel you understood Spina Bifida, your child's specific neural tube defect, and the care your child may need AFTER your prenatal visit? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree How did you gain additional information about Spina Bifida AFTER to your prenatal visit? Internet searching
Spina Bifida Association Website
Friends or family members
Social Media
Library or Books on Spina Bifida
The Spina Bifida Family Notebook provided in the prenatal visit Other Where did you find the most valuable information regarding Spina Bifida and how to care for your child AFTER to your prenatal visit? Text Response The prenatal visit and supplemental written education (Spina Bifida Family Notebook) helped prepare you to care for your child with Spina Bifida? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Specific Diagnoses related to Spina Bifida AN EDUCATIONAL TOOL FOR SPINA BIFIDA 26 At this time or in the past has your child been diagnosed with a Chiari Brain Malformation? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Chiari Brain Malformation. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time or in the past has your child been diagnosed with Hydrocephalus? Yes No At this time or in the past has your child needed a Shunt? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time or in the past has your child needed catheterization to help your child urinate? Yes No You feel you were prepared from your prenatal visit and supplement written education to identify signs and symptoms of bladder distention or needing catheterization. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time or in the past has your child needed medications to prevent Urinary Tract Infections? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Urinary Tract Infections Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time or in the past has your child needed a daily bowel management plan? Yes No You feel you were prepared from your prenatal visit to identify signs and You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of constipation. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 27 Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time or in the past has your child needed early intervention for developmental assistance? Yes No You feel you were prepared from your prenatal visit to identify signs and You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms developmental delays? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Spina Bifida Needs Assessment Data- Qualitative Thank you for beginning the third and final section of the survey. What would you add to the Spina Bifida Education? __________________________________ What have you learned by experience with your child that you wish you would have known in your prenatal education? __________________________________ What information in the prenatal visit and supplemental written education (Spina Bifida Family Notebook) do you think was informational, but did not improve your daily care of your child? __________________________________ Do you think an educational video would have been helpful to have been provided after your prenatal visit for reference? Yes No Where would you prefer to access an educational video specifically about caring for a child with Spina Bifida? YouTube
On the Spina Bifida Clinic Website
On a DVD handed out at the prenatal visit Other Other locations to access an educational video: ________________________________ This completes the survey to improve the Spina Bifida Education. We truly appreciate your time and efforts. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 28 Appendix C Pre-Intervention Survey Consent, email, demographics, Pre-Intervention Thank you for being willing to improve the Spina Bifida Education Process. Please complete the first of two surveys. Thank you! Consent You are being asked to contribute to a DNP project through a survey regarding the educational process you will be participating in regarding your child diagnosed with Spina Bifida. Before you decide, it is important for you to understand why the survey is being done and what it will involve. The purpose of this DNP project is to improve parental understanding and comfort to care for their child with Spina Bifida by offering an educational introductory video. Your participation will include answering a Pre-Intervention Survey, viewing an Educational Tool, and finally answering a Post-Intervention Survey. The risks of this survey are minimal but may include feel upset thinking about or talking about personal information related to your current experiences. There are no direct benefits for taking part in this survey. However, we hope the information we get from this survey may help develop a greater understanding of the educational needs for families of children with Spina Bifida in the future. Your email will only be used to send you the Post-Intervention Survey and will be stored on a secure database and never disclosed. In publications, your demographic information will be displayed anonymously. If you are injured from being in this study, medical care is available to you at the University of Utah or Primary Children's Hospital as it is to all sick or injured people. The University of Utah and Primary Children's Hospital (if applicable) has not set aside any money to pay the costs for such care. The University and Primary Children's Hospital will work with you to address costs from injuries. Costs would be charged to you or your insurance company (if you have insurance), to the study sponsor or other third party (if applicable), to the extent those parties are responsible for paying for medical care you receive. Since this is a research study, some health insurance plans may not pay for the costs. By signing this consent form you are not giving up your right to pursue legal action against any parties involved with this research. The University of Utah is a part of the government. If you are injured in this study, and want to sue the University or the doctors, nurses, students, or other people who work for the University, special laws may apply. The Governmental Immunity Act of Utah is a law that controls when a person needs to bring a claim against the government, and limits the amount of money a person may recover. See sections 63G -7-101 to -904 of the Utah Code. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 29 Research studies include only people who choose to take part. You can tell us that you don't want to be in this study. You can start the study and then choose to stop the study later. We will still give you medical care and answer any questions you have. Your decision will not affect your relationship with your doctor or the study team in any way. If you do not want to be in the study or want to stop being in the study, you will not receive a penalty and you will not lose any benefits. Your decision will not affect your relationship with the researcher or the study team in any way Thank you for taking an interest in approving the education of families with children with Spina Bifida. Do you consent to participating in the Spina Bifida Pre-Intervention Survey, viewing an Educational Tool and a Post- Intervention Survey? Yes No Email and Demographics Please provide your email address for the second portion of the survey. __________________________________ What is your primary language? English Spanish Other Maternal age when you will deliver your child with Spina Bifida? __________________________________ Marital status at time of birth of child with Spina Bifida? Married Partnered Single Parent Other What is the highest level of education you obtained? Some High School
High School Graduate
Some College or Post High School Training College Graduate
Other Number of children prior to child with Spina Bifida? 0
1
2
3
4 or more At what spinal level is your child with Spina Bifida suspected to be affected? __________________________________ Pre-Intervention Survey:
Please complete this portion prior to viewing the Spina Bifida Educational Video. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 30 Overall, you feel you understood Spina Bifida and the care your child may need after your prenatal visit and written educational binder (The Spina Bifida Family Notebook). Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect after your prenatal visit and written educational binder (The Spina Bifida Family Notebook). Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Specific Diagnoses related to Spina Bifida At this time has your child been diagnosed with a Chiari Brain Malformation? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Chiari Brain Malformation. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time has your child been diagnosed with Hydrocephalus? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time has your child been predicted to need catheterization to help your child urinate? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of bladder distention or needing catheterization. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time, has your child been predicted to need a daily bowel management plan? Yes No You feel you were prepared from your prenatal visit to identify signs and You feel you were AN EDUCATIONAL TOOL FOR SPINA BIFIDA 31 prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of constipation. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree At this time has your child been predicted to need early intervention for developmental assistance? Yes No You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms developmental delays? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Where would you prefer to access an educational video specifically about caring for a child with Spina Bifida? YouTube
On the Spina Bifida Clinic Website
On a DVD handed out at the prenatal visit Other Thank you for completion of the Pre-Intervention Survey. Please plan to view the Spina Bifida Educational Video at some point during the next week. We will then send you the second brief Post-Intervention Survey. Please add any comments below. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 32 Appendix D Post-Intervention Survey Please complete the brief, Post-Intervention survey below. Thank you! Email for pairing of responses. Please use same email as Pre-Intervention Survey. __________________________________ Post-Intervention Survey:
Please complete this portion AFTER to viewing the Spina Bifida Educational Video. Overall, you feel you understood Spina Bifida and the care your child may need after your prenatal visit, written educational binder (The Spina Bifida Family Notebook) AND after viewing The Spina Bifida Educational Video Tool. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect after your prenatal visit, written educational binder (The Spina Bifida Family Notebook) AND viewing the Spina Bifida Educational Video Tool. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Specific Diagnoses related to Spina Bifida You feel you were more prepared AFTER viewing The Spina Bifida Educational Video Tool, prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Chiari Brain Malformation. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree You feel you were more prepared AFTER viewing The Spina Bifida Educational Video Tool, prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree You feel you were more prepared AFTER viewing The Spina Bifida Educational Video Tool, prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of bladder distention or needing catheterization. Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree You feel you were more prepared AFTER viewing The Spina Bifida Educational Video Tool, prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of constipation. AN EDUCATIONAL TOOL FOR SPINA BIFIDA 33 Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree You feel you were more prepared AFTER viewing The Spina Bifida Educational Video Tool, prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms developmental delays? Strongly Disagree Disagree
Neither Disagree or Agree Agree
Strongly Agree Thank you for completion of the Post-Intervention Survey. This completes the survey to improve the Spina Bifida Education. We truly appreciate your time and efforts. Please add any comments below. __________________________________ AN EDUCATIONAL TOOL FOR SPINA BIFIDA 34 Tables and Graphs for Needs Assessment Survey Table 1a. Descriptive Statistics of Demographics Valid N 12 Missing 4 N Maternal age when delivered child with Spina Bifida? Number of children prior to child with Spina Bifida Minimum Maximum Mean Std. Deviation 12 22 35 28.42 3.965 12 0 3 .92 1.084 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 1b. Frequency Statistics of Demographics Valid N 12 Missing 4 Marital status at time of birth of child with Spina Bifida? Variable Frequency Percent Married 12 100.0 Other Response 0 0 What is the highest level of education you obtained? Variable Frequency Percent Some High School 0 0 High School 0 0 Graduate Some College or Post 4 33.3 High School Training College Graduate 8 66.7 Other 0 0 How old is your child with Spina Bifida now? Variable Frequency Percent Less than 1 year 3 25.0 1 year old 2 16.7 2 years old 3 25.0 3 years old 2 16.7 Older than 4 years 2 16.7 old At what spinal level is your child with Spina Bifida affected? (Proximal spine defect listed) Variable Frequency Percent T6 1 8.3 T12 1 8.3 L1 1 8.3 L2 1 8.3 L3 1 8.4 L4 4 33.4 L5 3 25.0 35 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 1c. Frequency Statistics of Understanding of SB PRIOR to Prenatal Visit Compared to AFTER Prenatal Visit Valid N Missing 12 4 How well did you feel you understood Spina Bifida and the care your child may need PRIOR to your prenatal visit? Variable Frequency Percent Strongly Disagree 3 25.0 Disagree 3 25.0 Neither Disagree or 1 8.3 Agree Agree 4 33.3 Strongly Agree 1 8.3 How well did you feel you understood Spina Bifida, your child's specific neural tube defect, and the care your child may need AFTER your prenatal visit? Variable Frequency Percent Strongly Disagree 0 0.0 Disagree 0 0.0 Neither Disagree or 2 16.7 Agree Agree 7 58.3 Strongly Agree 3 25.0 36 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 37 Graph 1 Number of Responses Understanding of SB PRIOR to Prenatal Visit Compared to AFTER Prenatal Visit with Standard Education 7 8 6 4 2 0 3 4 3 0 Stongly Disagree 0 Disagree 1 2 Neither Disagree or Agree 3 1 Agree Likert Scale of Agreement with Statement Understanding of SB Prior to Prenatal Visit Understanding of SB After Prenatal Visit Strongly Agree AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 1d. Specific Diagnosis and Parental Feeling Prepared to Care After Standard Education Program Valid N Missing 12 4 At this time or in the past has your child been diagnosed with a Chiari Brain Malformation? Variable Frequency Percent No 1 8.3 Yes 11 91.7 You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Chiari Brain Malformation. Variable Frequency Percent Strongly Disagree 0 0 Disagree 1 8.3 Neither Disagree or 2 16.7 Agree Agree 6 50.0 Strongly Agree 3 25.0 At this time or in the past has your child been diagnosed with Hydrocephalus? Variable Frequency Percent No 1 8.3 Yes 11 91.7 At this time or in the past has your child needed a Shunt? Variable Frequency Percent No 6 50.0 Yes 6 50.0 You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Variable Frequency Percent Strongly Disagree 0 0 Disagree 0 0 Neither Disagree or 1 8.3 Agree Agree 8 66.7 Strongly Agree 3 25.0 38 AN EDUCATIONAL TOOL FOR SPINA BIFIDA At this time or in the past has your child needed medications to prevent Urinary Tract Infections? Variable Frequency Percent No 8 66.7 Yes 4 33.3 You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of a possible UTI Variable Frequency Percent Strongly Disagree 0 0 Disagree 2 16.7 Neither Disagree or 4 33.3 Agree Agree 4 33.3 Strongly Agree 2 16.7 At this time or in the past has your child needed a daily bowel management plan? Variable Frequency Percent No 3 25.0 Yes 9 75.0 You feel you were prepared from your prenatal visit to identify signs and You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms of constipation. Variable Frequency Percent Strongly Disagree 0 0 Disagree 3 25.0 Neither Disagree or 2 16.7 Agree Agree 6 50.0 Strongly Agree 1 8.3 At this time or in the past has your child needed early intervention for developmental assistance? Variable Frequency Percent No 0 0 Yes 12 100.0 You feel you were prepared from your prenatal visit to identify signs and You feel you were prepared from your prenatal visit and supplemental written education (Spina Bifida Family Notebook) to identify signs and symptoms developmental delays? Variable Frequency Percent Strongly Disagree 0 0 Disagree 4 33.3 Neither Disagree or 3 25.0 Agree Agree 4 33.3 Strongly Agree 1 8.3 39 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 1 e. Do you think an educational video would have been helpful to have been provided after your prenatal visit for reference? Variable Frequency Percent No 1 9.1 Yes 10 90.9 Graph 2 Valid N Missing 11 5 Do you think an educational video would have been helpful to have been provided after your prenatal visit for reference? 1 10 No Yes 40 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 41 Graph 3 Where would you prefer to access an educational video specifically about caring for a child with Spina Bifida Number of Responses- Multiple Responses Allowed (n=11) DVD handed out at Prenatal Visit 4 Local Spina Bifida Website 7 YouTube link provided at Prenatal Visit 10 0 2 4 6 8 10 12 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 42 Tables and Graphs for Pre-Intervention and Post-Intervention Pilot Project Table 2a. Demographics of Pre-Intervention and Post-Intervention Pilot Project Participants Primary Language Maternal Age Marital Status Highest Level of Education Number of Children Prior to Child with SB Predicted Level of Spinal Defect Where would you prefer to access an educational video specifically about caring for a child with Spina Bifida? Prenatal Phase Participant English 30 Married College Graduate 2 Postnatal Phase Participant English 32 Married College Graduate 1 L5 L1 YouTube YouTube AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 2b. Prenatal Phase Participant Comparison Pre-Intervention to Post-Intervention Overall Understanding and Comfort to Care for their Child with SB Overall, you feel you understood Spina Bifida and the care your child may need. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Disagree Neither Disagree or Agree 43 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 2c. Prenatal Phase Participant Specific Diagnoses and Feeling Prepared to Care for Specific Diagnoses At this time has your child been diagnosed with a Chiari Brain Malformation? (Yes/No) No You feel you were prepared to identify signs and symptoms of a possible Chiari Brain Malformation. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Agree At this time has your child been diagnosed with Hydrocephalus? (Yes/No) No You feel you were prepared to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Agree At this time has your child been predicted to need catheterization to help your child urinate? (Yes/No) No You feel you were prepared from to identify signs and symptoms of bladder distention or needing catheterization. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree At this time, has your child been predicted to need a daily bowel management plan? (Yes/No) No You feel you were prepared to identify signs and symptoms of constipation. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree At this time has your child been predicted to need early intervention for developmental assistance? (Yes/No) 44 AN EDUCATIONAL TOOL FOR SPINA BIFIDA No You feel you were prepared to identify signs and symptoms developmental delays? Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Neither Disagree or Agree 45 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 2d. Postnatal Phase Participant Comparison Pre-Intervention to Post-Intervention Overall Understanding and Comfort to Care for their Child with SB Overall, you feel you understood Spina Bifida and the care your child may need. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Agree 46 AN EDUCATIONAL TOOL FOR SPINA BIFIDA Table 2e. Postnatal Phase Participant Specific Diagnoses and Feeling Prepared to Care for Specific Diagnoses At this time has your child been diagnosed with a Chiari Brain Malformation? (Yes/No) Yes You feel you were prepared to identify signs and symptoms of a possible Chiari Brain Malformation. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Disagree At this time has your child been diagnosed with Hydrocephalus? (Yes/No) Yes You feel you were prepared to identify signs and symptoms of a possible Hydrocephalus and/or Shunt malfunctions. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Neither Disagree or Agree At this time has your child been predicted to need catheterization to help your child urinate? (Yes/No) Yes You feel you were prepared from to identify signs and symptoms of bladder distention or needing catheterization. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Neither Disagree or Agree At this time, has your child been predicted to need a daily bowel management plan? (Yes/No) Yes You feel you were prepared to identify signs and symptoms of constipation. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Neither Disagree or Agree At this time has your child been predicted to need early intervention for developmental assistance? (Yes/No) 47 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 48 Yes You feel you were prepared to identify signs and symptoms developmental delays? Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Disagree Comments from Postnatal Phase Post-Intervention: I'm glad to have watched the video, however, it served more as a reminder than new or further information. AN EDUCATIONAL TOOL FOR SPINA BIFIDA Graph 4 Prenatal Phase Participant Comparison Pre-Intervention to Post-Intervention Overall Understanding and Comfort to Care for their Child with SB Overall, you feel you understood Spina Bifida and the care your child may need. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Disagree Neither Disagree or Agree Postnatal Phase Participant Comparison Pre-Intervention to Post-Intervention Overall Understanding and Comfort to Care for their Child with SB Overall, you feel you understood Spina Bifida and the care your child may need. Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Agree Agree Overall, you feel comfortable and able to provide care to your child's specific neural tube defect after your prenatal visit and written educational binder (The Spina Bifida Family Notebook). Using Likert Scale: Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, or Strongly Agree Pre-Intervention Post-Intervention Neither Disagree or Agree Agree 49 AN EDUCATIONAL TOOL FOR SPINA BIFIDA 50 Graph 4 Pre-Intervention vs Post-Intervention in Pilot Program Prenatal Phase Participant Overall Understanding of SB Prenatal Phase Participant Overall Comfort to Care for SB Postnatal Phase Participant Overall Understanding of SB Postnatal Phase Participant Overall Comfort to Care for SB Strongly Disagree, Disagree, Neither Disagree or Agree, Agree, Strongly Agree Pre-Intervention Post-Intervention