227
Views
0
CrossRef citations to date
0
Altmetric
Research Articles

Exploring the complexities of weight management care for children with spina bifida: a qualitative study with children and parents

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, & ORCID Icon show all
Pages 3440-3448 | Received 04 Apr 2023, Accepted 18 Aug 2023, Published online: 04 Sep 2023

References

  • Sacco A, Ushakov F, Thompson D, et al. Fetal surgery for open spina bifida. Obstet Gynaecol. 2019;21(4):271–282. doi: 10.1111/tog.12603.
  • Copp AJ, Adzick NS, Chitty LS, et al. Spina bifida. Nat Rev Dis Primers. 2015;1(1):15007. doi: 10.1038/nrdp.2015.7.
  • Rimmer J, Rowland J, Yamaki K. Obesity and secondary conditions in adolescents with disabilities: addressing the needs of an underserved population. J Adolesc Health. 2007;41(3):224–229. doi: 10.1016/j.jadohealth.2007.05.005.
  • Dosa NP, Foley JT, Eckrich M, et al. Obesity across the lifespan among persons with spina bifida. Disabil Rehabil. 2009;31(11):914–920. doi: 10.1080/09638280802356476.
  • Reinehr T, et al. Obesity in disabled children and adolescents: an overlooked group of patients. Deutsches Ärzeblatt International. 2010;107(15):268–275.
  • Hadjiyannakis S, Buchholz A, Chanoine J-P, et al. The Edmonton obesity staging system for pediatrics (EOSS-P): a proposed clinical staging system for pediatric obesity. Paediatr Child Health. 2016;21(1):21–26. doi: 10.1093/pch/21.1.21.
  • Simeonsson R, McMillen J, Huntington G. Secondary conditions in children with disabilities: Spina bifida as an example. Ment Retard Dev Disabil Res Rev. 2002;8(3):198–205. doi: 10.1002/mrdd.10038.
  • Spina Bifida Association. Community Survey. https://www.spinabifidaassociation.org/community-survey/. 2020.
  • McPherson AC, Leo J, Church P, et al. An environmental scan of weight assessment and management practices in paediatric spina bifida clinics across Canada. J Pediatr Rehabil Med. 2014;7(3):207–217. doi: 10.3233/PRM-140290.
  • McPherson AC, Swift JA, Peters M, et al. Communicating about obesity and weight-related topics with children with a physical disability and their families: Spina bifida as an example. Disabil Rehabil. 2017;39(8):791–797. doi: 10.3109/09638288.2016.1161845.
  • Roberts K, Polfuss M. Weight stigma in children and adolescents: recommendations for practice and policy. Nursing. 2022;52(6):17–24. doi: 10.1097/01.NURSE.0000829904.57766.58.
  • Sahoo K, Sahoo B, Choudhury AK, et al. Childhood obesity: causes and consequences. J Family Med Prim Care. 2015;4(2):187–192. doi: 10.4103/2249-4863.154628.
  • Mustapic J, Marcinko D, Vargek P. Body shame and disordered eating in adolescents. Curr Psychol. 2017;36(3):447–452. doi: 10.1007/s12144-016-9433-3.
  • Stiles-Shields C, Holmbeck G. Health behaviors and disordered eating in adolescents and young adults with spina bifida: results from a national survey. Disabil Rehabil. 2020;42(20):2910–2916. doi: 10.1080/09638288.2019.1575483.
  • Silber T, Shaer C, Atkins D. Eating disorders in adolescents and young women with spina bifida. Int J Eat Disord. 1999;25(4):457–461. doi: 10.1002/(SICI)1098-108X(199905)25:4<457::AID-EAT11>3.0.CO;2-S.
  • Rowland E, Knibbe TJ, English K, et al. Oh I try, but it’s so hard": parental experiences of health promotion in children with disabilities. Disabil Rehabil. 2022;44(18):5133–5140. doi: 10.1080/09638288.2021.1925977.
  • Luther B, Christian B. Parent perceptions of health promotion for school-age children with spina bifida. J Spec Pediatr Nurs. 2017;22(1):e12168. doi: 10.1111/jspn.12168.
  • Economos CD, Bakun PJ, Herzog JB, et al. Children’s perceptions of weight, obesity, nutrition, physical activity and related health and socio-behavioural factors. Public Health Nutr. 2014;17(1):170–178. doi: 10.1017/S136898001200479X.
  • Soderback M, Coyne I, Harder M. The importance of including both a child perspective and the child’s perspective within health care settings to provide truly child-centred care. J Child Health Care. 2011;15(2):99–106. doi: 10.1177/1367493510397624.
  • Team ABC3. The team to address bariatric care in Canadian children (team ABC3): team grant research proposal. BMC Research Notes. 2017;10(1):301.
  • Thorne S. Interpretive description: qualitative research for applied practice. In: Beck CT, editor. Routledge international handbook of qualitative nursing research. Routledge: New York; 2013. p. 295–306.
  • Thorne. Interpretive description: qualitative research for applied practice. Vol. 2. New York: Routledge; 2016.
  • Lindquist B, Jacobsson H, Strinnholm M, et al. A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life. Acta Paediatrica. 2022;111(9):1682–1694. doi: 10.1111/apa.16420.
  • McPherson AC, Chen L, O’Neil J, et al. Nutrition, metabolic syndrome, and obesity: guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):637–653. doi: 10.3233/PRM-200753.
  • Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inf. 2009;42(2):377–381. doi: 10.1016/j.jbi.2008.08.010.
  • Harris PA, Taylor R, Minor BL, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform. 2019;95:103208.
  • Draper A, Swift J. Qualitative research in nutrition and dietetics: data collection issues. J Hum Nutr Diet. 2011;24(1):3–12. doi: 10.1111/j.1365-277X.2010.01117.x.
  • Kallio H, Pietilä A-M, Johnson M, et al. Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs. 2016;72(12):2954–2965. doi: 10.1111/jan.13031.
  • Hesketh K, Waters E, Green J, et al. Healthy eating, activity and obesity prevention: a qualitative study of parent and child perceptions in Australia. Health Promot Int. 2005;20(1):19–26. doi: 10.1093/heapro/dah503.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa.
  • Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Res Sport, Exercise and Health. 2019;11(4):589–597. doi: 10.1080/2159676X.2019.1628806.
  • Ryan G, Bernard H. Techniques to identify themes. Field Methods. 2003;15(1):85–109. doi: 10.1177/1525822X02239569.
  • Pilnick A, Swift J. Qualitative research in nutrition and dietetics: assessing quality. J of Human Nutr Dietetics. 2011;24(3):209–214. doi: 10.1111/j.1365-277X.2010.01120.x.
  • Fade S, Swift J. Qualitative research in nutrition and dietetics: data analysis issues. J Hum Nutr Diet. 2011;24(2):106–114. doi: 10.1111/j.1365-277X.2010.01118.x.
  • Shenton A. Strategies for ensuring trustworthiness in qualitative research projects. EFI. 2004;22(2):63–75. doi: 10.3233/EFI-2004-22201.
  • Tracy S. Qualitative quality: eight "big-tent" criteria for excellent qualitative research. Qualitative Inquiry. 2010;16(10):837–851. doi: 10.1177/1077800410383121.
  • Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. TQR. 2015;20(9):1408–1416. doi: 10.46743/2160-3715/2015.2281.
  • Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Res Sport, Exercise and Health. 2021;13(2):201–216. doi: 10.1080/2159676X.2019.1704846.
  • Puhl R, Lessard L. Weight stigma in youth: prevalence, consequences and considerations for clilnical practice. Curr Obes Rep. 2020;9(4):402–411. doi: 10.1007/s13679-020-00408-8.
  • Major B, Hunger JM, Bunyan DP, et al. The ironic effects of weight stigma. Journal of Exper Social Psychol. 2014;51:74–80. doi: 10.1016/j.jesp.2013.11.009.
  • Tomiyama A. Weight stigma is stressful. A review of evidence for the cyclic obesity/weight-based stigma model. Appetite. 2014;82:8–15. doi: 10.1016/j.appet.2014.06.108.
  • Puhl R, Latner J. Stigma, obesity, and the health of the nation’s children. Psychol Bull. 2007;133(4):557–580. doi: 10.1037/0033-2909.133.4.557.
  • Chelvanayagam S. Stigma, taboos, and altered bowel function. Gastrointestinal Nursing. 2014;12(1):16–22. doi: 10.12968/gasn.2014.12.1.16.
  • Thomas E, et al. It’s very valuable to me that I appear capable”: a qualitative study exploring relationships between body functionality and appearance among women with visible physical disabilities. Body Image. 2019;30:80–92.
  • Cicmil N, Eli K. Body image among eating disorder patients with disabilities: a review of published case studies. Body Image. 2014;11(3):266–274. doi: 10.1016/j.bodyim.2014.04.001.
  • Walker M, Mistry B, Amin R, et al. A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management. Disabil Rehabil. 2022;44(26):8234–8242. doi: 10.1080/09638288.2021.2008528.
  • Gibson BE, Teachman G. Critical approaches in physical therapy research: investigating the symbolic value of walking. Physiother Theory Pract. 2012;28(6):474–484. doi: 10.3109/09593985.2012.676936.
  • Fischer N, Church P, Lyons J, et al. A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation. Child Care Health Dev. 2015;41(6):954–962. Early online 23 May 2015). doi: 10.1111/cch.12257.
  • Brownell KD, Kersh R, Ludwig DS, et al. Personal responsibility and obesity: a constructive approach to a controversial issue. Health Aff (Millwood). 2010;29(3):379–387. doi: 10.1377/hlthaff.2009.0739.
  • Kk D, Ll B. Childhood overweight: a contextual model and recommendations for future research. Obesity Rev. 2001;2(3):159–171. doi: 10.1046/j.1467-789x.2001.00036.x.
  • Foster B, Hale D. Perceptions of weight and health practices in Hispanic children: a mixed methods study. Int J Pediatr. 2015;2015:761515–761516. doi: 10.1155/2015/761515.
  • Kee JW, Khoo HS, Lim I, et al. Communication skills in patient-doctor interactions: learning from patients complaints. Health Professions Educ. 2018;4(2):97–106. doi: 10.1016/j.hpe.2017.03.006.
  • McPherson AC, Hamilton J, Kingsnorth S, et al. Communicating with children and families about obesity and weight-related topics: a scoping review of best practices. Obes Rev. 2017;18(2):164–182. doi: 10.1111/obr.12485.
  • Bonder R, et al. "They assume that you’re not having sex": a qualitative exploration of how healthcare providers can have positive sexuality-related conversations with youth with disabilities. Sexual Disabil. 2021;39(3):579–594. doi: 10.1007/s11195-021-09686-z.
  • Wehmeyer M. A functional model of self-determination: describing development and implementing instruction. Focus Autism Other Dev Disabl. 1999;14(1):53–61. doi: 10.1177/108835769901400107.
  • Burke KM, Raley SK, Shogren KA, et al. A meta-analysis of interventions to promote self-determination for students with disabilities. Remedial and Special Education. 2020;41(3):176–188. doi: 10.1177/0741932518802274.
  • Polfuss M, Johnson N, Bonis SA, et al. Autism spectrum disorder and the child’s weight–related behaviors: a parents’ perspective. J Pediatr Nurs. 2016;31(6):598–607. doi: 10.1016/j.pedn.2016.05.006.
  • Denney KE, A KL, Watson JM. Exploring the communication needs and challenges of adults with autism spectrum disorders: communication partners’ perspectives. Int J Speech Lang Pathol. 2022;24(6):607–615. doi: 10.1080/17549507.2022.2027520.
  • Turel T, Jameson M, Gitimu P, et al. Disordered eating: influence of body image, sociocultural attitudes, appearance anxiety and depression- a focus on college males and gender comparison. Cogent Psychol. 2018;5(1):1483062. doi: 10.1080/23311908.2018.1483062.
  • Green J, Thorogood N. Qualitative methods for health research. London: Sage Publications; 2010.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.