A Call to Focus on Disabilities in Child and Family Health Research
Jennifer Manganello, PhD, MPH✉; Child and Family Health SIG Member; Parent
Tara M. Lutz, PhD, MPH, CHES®✉; Association of University Centers on Disabilities (AUCD) Disability Studies SIG Co-Chair; Sibling
According to a report published in Fall of 2019, 1 in 6 children have a developmental disability, and the prevalence of developmental disability among U.S. children ages 3-17 has increased between 2009-2017.1 In addition, 7.7% of youth ages 0-17 living in the U.S. have any type of disability.2 At the same time, the Surgeon General’s Call to Action3 and the inclusion of disability in Healthy People4 place a focus on the health of persons with disabilities (PWD). Including youth with disabilities (YWD) and their families in research is necessary to improve health outcomes for this important population.
YWD are often at increased risk of negative health outcomes compared to children without disabilities.5 Further, parents of YWD can be at increased health risks, and even with resilience often need support.6,7 Many times, siblings of YWD are caregivers too, yet their experiences are not well documented.8 Research should also include parents with disabilities. We recommend that researchers:
- Include disability as a demographic variable in data collection to identify YWD when appropriate.
- Avoid excluding YWD and their families as study participants unless necessary for study aims.
- Conduct accessible research so that YWD and their families can participate.9
We should also think about how to include YWD and their families as research partners utilizing community-engaged approaches.10,11,12,13 Including YWD and their families in the research process from planning to dissemination can help inform program development, adapt data collections tools, and have greater potential to impact practice.14,15,16,17 Researchers can:
- Think about how YWD and their families can be engaged as research partners.
In April 2019, the World Health Organization (WHO) released new recommendations for child health behavior and encouraged inclusivity stating: “…consider the particular needs of children with disabilities and how guidelines can be adapted to meet their needs”.18 Interventions, programs, and services do not need to be developed specifically for YWD if principles such as universal design are incorporated at the planning stages.19,20 We suggest researchers:
- Consider YWD in program design and evaluation.
- Include strategies or suggestions on how they apply to all youth, including YWD, when discussing practice, programs or recommendations.
- Utilize resources from organizations focused on inclusive programs and practices.21,22
Interdisciplinary training such as the Leadership Education in Neurodevelopmental and related Disabilities (LEND)23 program can improve the health of YWD by promoting research and innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships. Educators and researchers can:
- Think about how to include a focus on YWD when training future researchers.
- Utilize resources for training students such as the Association of University Centers on Disabilities (AUCD).24
Finally, dissemination is a key part of research. Be sure to:
- Translate results to disseminate findings to the general public as well as the scientific community.
- Check that dissemination plans meet accessibility recommendations.25,26
- Use appropriate language when talking about YWD. Ask about preferences regarding language and terminology. Some may prefer person first, while others may prefer identity first language.27,28,29,30
We ask researchers to consider the above recommendations to help expand research on YWD, and to enhance implications of research findings to benefit YWD and their families.
- Zablotsky, B., et al. (2019). Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Pediatrics, 144(4), e20190811.
- Kraus, L., Lauer, E., Coleman, R., & Houtenville, A. (2018). 2017 Disability Statistics Annual Report. Durham, NH: University of New Hampshire.
- Office of the Surgeon General (US); Office on Disability (US). Rockville, MD. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. (2005). Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK44667
- HealthyPeople 2020. (2019). Disability and health. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health
- Action for Healthy Kids (2019). Retrieved from https://www.actionforhealthykids.org/including-all-children-health-for-kids-with-disabilities/
- Chambers, H., & Chambers, J. (2014). Effects of caregiving on the families of children and adults with disabilities. Phys Med Rehabil Clin N Am, 26, 1-19.
- Miodrag, N., Burke, M., Tanner-Smith, E., & Hodapp, R.M. (2014). Adverse health in parents of children with disabilities and chronic health conditions: A meta-analysis using the Parenting Stress Index’s Health Sub-domain. Journal of Intellectual Disability Research, 59, 257-271.
- Heller, T. & Kaiser, A. (2008). Research related to siblings of individuals with disabilities. Retrieved from https://siblingleadership.org/research/research-related-to-siblings-of-individuals-with-disabilities/
- Rios, D., Magasi, S., Novak, C., & Harniss, M. (2016). Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies. American Journal of Public Health, 106(12), 2137–2144.
- Alwadi, M.A., Baker, S.R., & Owens, J. (2018). The inclusion of children with disabilities in oral health research: A systematic review. Community Dent Oral Epidemiol, 46, 238– 244.
- Bailey, S., Boddy, K., Briscoe, S., & Morris, C. ( 2015), Involving disabled children and young people as partners in research: A systematic review. Child Care Health Dev, 41, 505– 514.
- National Disability Authority. (2002). Guidelines for including people with disabilities in research. Retrieved from http://nda.ie/nda-files/Guidelines-for-Including-People-with-Disabilities-in-Research.pdf
- Williams, A. S., & Moore, S. M. (2011). Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies. Science translational medicine, 3(82), 82cm12.
- Family Voices. (2019). Retrieved from http://familyvoices.org/
- Nicolaidis, C., et al. (2015). Community-based participatory research to adapt health measures for use by people with developmental disabilities. Progress in Community Health Partnerships: Research, Education, and Action, 9(2), 157-170.
- St. John, B., Mihaila, I., Dorrance, K., DaWalt, LS., & Ausderau, K.K. (2018). Reflections from co-researchers with intellectual disability: Benefits to inclusion in a research study team. American Association on Intellectual and Developmental Disabilities, 56(4), 251-262.
- Suarez-Balcazar, Y., et al. (2018). Community based participatory research to promote healthy lifestyles among Latino immigrant families with youth with disabilities. Scandinavian Journal of Occupational Therapy, 25(5), 396-406.
- World Health Organization (WHO). (2019). New WHO guidelines on physical activity, sedentary behavior and sleep for children under 5 years of age. WHO. Retrieved from https://www.who.int/news-room/detail/24-04-2019-to-grow-up-healthy-children-need-to-sit-less-and-play-more
- Noyes-Grosser, D. (2007) Children and youth with disabilities and public health: A Model syllabus for health professionals. Infants & Young Children, 20(3), 202-221.
- Rossetti, R. (2006). The seven principles of universal design. Universal Design Living Library. Retrieved from https://www.udll.com/media-room/articles/the-seven-principles-of-universal-design/
- National Center for Disability in Public Health. (2019). Retrieved from https://nationalcenterdph.org/
- National Center on Health, Physical Activity and Disability (NCHPAD). (2019). Retrieved from https://www.nchpad.org/
- HRSA Maternal and Child Health. (2019). Leadership Education in Neurodevelopmental and Related Disabilities (LEND) fact sheet. Retrieved from: https://mchb.hrsa.gov/training/documents/fs/factsheet-LEND.pdf
- Association of University Centers on Disabilities (AUCD). (2019). Retrieved from https://www.aucd.org/template/page.cfm?id=473
- National Association of County and City Health Officials (NACCHO). (2019). Five steps for inclusive communications: Engaging people with disabilities. The National Connection for Local Public Health. Retrieved from https://www.naccho.org/uploads/downloadable-resources/HDfactsheet_accessiblecomms-Oct2016.pdf
- Mallett, R., Runswick‐Cole, K. & Collingbourne, T. (2007) Guide for accessible research dissemination: Presenting research for everyone, Disability & Society, 22(2), 205-207.
- Callahan, M. (2018). ‘Autistic person’ or ‘person with autism’: Is there a right way to identify people? News @ Northeastern. Retrieved from https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/
- Snow, K. (2013). Examples of people first language. Retrieved from https://dda.health.maryland.gov/Pages/images/pflchart09.pdf
- Kassenbrock, R. (2015). Should you use person first or identity first language? Retrieved from https://themighty.com/2015/08/should-you-use-person-first-or-identity-first-language2/
- Haelle, T. (2019). Identity-first vs. person-first language is an important distinction. Association of Health Care Journalists. Retrieved from https://healthjournalism.org/blog/2019/07/identity-first-vs-person-first-language-is-an-important-distinction/