Experiences before and after nasogastric and gastrostomy tube insertion with emphasis on mealtimes: a case study of an adolescent with cerebral palsy

References

• Adams, C. R., & Roy, E. E. (2014). Nonoral feeding for children and youth with developmental or acquired disabilities. Paediatrics, 134(6), 1745–13. https://doi.org/https://doi.org/10.1542/peds.2014-2829
   Web of Science ®Google Scholar
• Alriksson-Schmidt, A., & Hagglund, G. (2016). Pain in children and adolescents with cerebral palsy: A population-based registry study. Acta Paediatrica, 105(6), 665–670. https://doi.org/https://doi.org/10.1111/apa.13368
   PubMed Web of Science ®Google Scholar
• Backman, E., Granlund, M., & Karlsson, A.-K. (2021). Parental perspectives on family mealtimes related to gastrostomy tube feeing in children. Qualitative Health Research, 2021 Mar 5;1049732321997133. https://doi.org/https://doi.org/10.1177/1049732321997133
   Google Scholar
• Backman, E., & Karlsson, A.-K. (2021). Children’s perspectives on mealtimes when living with a gastrostomy tube: A qualitative study. Journal of Pediatric Nursing, May-Jun 2021;58:53-59. https://doi.org/https://doi.org/10.1016/j.pedn.2020.11.018
   Google Scholar
• Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41(5), 545 (3). https://doi.org/https://doi.org/10.1188/14.ONF.545-547
   Google Scholar
• Caselli, T. B., Lomazi, E. A., Montenegro, M. A. S., & Bellomo-Brandao, M. A. (2017). Comparative study on gastrostomy and oral nutrition of children and adolescents with tetra paresis cerebral palsy. Arquivos De Gastroenterologia, 54(4), 292–296. https://doi.org/https://doi.org/10.1590/s0004-2803.201700000-48
   Google Scholar
• Ebneyamini, S., & Moghadam, M. R. S. (2018). Toward developing a framework for conducting case study research. International Journal of Qualitative Methods, 17(1), 1–11. https://doi.org/https://doi.org/10.1177/1609406918817954
   Web of Science ®Google Scholar
• Edwards, J. S. A., & Gustafsson, I.-B. (2008). The five aspects meal model. Journal of Foodservice, 19(1), 4–12. https://doi.org/https://doi.org/10.1111/j.1745-4506.2007.00075.x
   Google Scholar
• Edwards, L., & Leafman, J. S. (2019). Perceptions of gastrostomy buttons among caregivers of children with special health care needs. Journal of Pediatric Health Care, 33(3), 270–279. https://doi.org/https://doi.org/10.1016/j.pedhc.2018.09.005
   Web of Science ®Google Scholar
• Efune, P. N., Minhajuddin, A., & Szmuk, P. (2018). Incidence and factors contributing to post discharge nausea and vomiting in paediatric ambulatory surgical cases. Pediatric Anesthesia, 28(3), 257–263. https://doi.org/https://doi.org/10.1111/pan.13333
   PubMed Web of Science ®Google Scholar
• Eliasson, A. C., Krumlinde-Sundholm, L., Rosblad, B., Beckung, E., Arner, M., Ohrvall, A. M., & Rosenbaum, P. (2006). The manual ability classification system (MACS) for children with cerebral palsy: Scale development and evidence of validity and reliability. Developmental Medicine & Child Neurology, 48(7), 549–554. https://doi.org/https://doi.org/10.1017/S0012162206001162
   PubMed Web of Science ®Google Scholar
• Equator network. Standards for reporting qualitative research (SRQR). 2019. UK EQUATOR Centre. Retrieved June 30, 2020, from www.equator-network.org
   Google Scholar
• Graham, D., Paget, S. P., & Wimalasundera, N. (2019). Current thinking in the health care Management of children with cerebral palsy. Medical Journal of Australia, 210(3), 129–135. Epub 2019 Feb 10. https://doi.org/https://doi.org/10.5694/mja2.12106.
   Web of Science ®Google Scholar
• Gustafsson, I.-B. (2004). Culinary arts and meal science—a new scientific research discipline. Food Service Technology, 4(1), 9–20. https://doi.org/https://doi.org/10.1111/j.1471-5740.2003.00083.x
   Google Scholar
• Gustafsson, I.-B., Öström, Å., Johansson, J., & Mossberg, L. (2006). The five aspects meal model: A tool for developing meal services in restaurants. Journal of Foodservice, 17(2), 84–93. https://doi.org/https://doi.org/10.1111/j.1745-4506.2006.00023.x
   Google Scholar
• Hemmingsson, H., Björk Ólafsdóttir, L., & Thóra Egilson, S. (2017). Agreements and disagreements between children and their parents in health-related assessments. Disability and Rehabilitation, 39(11), 1059–1072. https://doi.org/https://doi.org/10.1080/09638288.2016.1189603
   PubMed Web of Science ®Google Scholar
• Heuschkel, R. B., Gottrand, F., Devarajan, K., Poole, H., Callan, J., Dias, J. A., Karkelis, S., Papadopoulou, A., Husby, S., Ruemmele, F., Schappi, M. G., Wilschanski, M., Lionetti, P., Orel, R., Tovar, J., Thapar, N., & Vandenplas, Y. (2015). ESPGHAN poistion paper on management of percutaneous endoscopic gastrostomy in children and adolescents. JPGN, 60(1), 131–141. https://doi.org/https://doi.org/10.1097/MPG.0000000000000501
   Google Scholar
• Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J., Eulenberg, J. B., Chester, K., Jr Johnson, B., Michalsen, L., Evatt, M., & Taylor, K. (2011). Developing and validating the communicating system for individuals with cerebral palsy. Developmental Medicine & Child Neurology, 53(8), 704–710. https://doi.org/https://doi.org/10.1111/j.1469-8749.2011.03996.x
   PubMed Web of Science ®Google Scholar
• Jayanath, S., Ong, L. C., Marret, M. J., & Fauzi, A. A. (2016). Parent-reported pain in non-verbal children and adolescents with cerebral palsy. Developmental Medicine & Child Neurology, 58(4), 395–401. https://doi.org/https://doi.org/10.1111/dmcn.12943
   Web of Science ®Google Scholar
• Kakade, M., Coyle, D., McDowell, D. T., & Gillick, J. (2015). Percutaneous endoscopic gastrostomy (PEG) does not worsen vomiting in children. Pediatric Surgery International, 31(6), 557–562. https://doi.org/https://doi.org/10.1007/s00383-015-3707-y
   Web of Science ®Google Scholar
• Kim, H.-J., Choi, H.-N., & Yim, J.-E. (2018). Food Habits, dietary intake, and body composition in children with cerebral palsy. Clinical Nutrition Research, 7(4), 266–275. https://doi.org/https://doi.org/10.7762/cnr.2018.7.4.266
   Google Scholar
• Lee, K. J., & Corden, T. E. (2019). Feeding tubes in children with neurological impairment: An opportunity for shared decision-making. Paediatrics, 143(2), 2. https://doi.org/https://doi.org/10.1542/peds.2018-3623
   Web of Science ®Google Scholar
• Leonard, M., Dain, E., Pelc, K., Dan, B., & De Laet, C. (2020). Nutritional status of neurologically impaired children: Impact on comorbidity. Archives De Pédiatrie, 27(2), 95–103. https://doi.org/https://doi.org/10.1016/j.arcped.2019.11.003
   PubMed Web of Science ®Google Scholar
• Longo, E., Badia, M., Begoma Orgaz, M., & Gómez-Vela, M. (2017). Comparing parent and child reports of health-related quality of life and their relationship with leisure participation in children and adolescents with cerebral palsy. Research in Developmental Disabilities, 2017 Dec;71:214-222. https://doi.org/https://doi.org/10.1016/j.ridd.2017.09.020
   Google Scholar
• Mahant, S., Cohen, E., Nelson, K. E., & Rosenbaum, P. (2018). Decision-making around gastrostomy tube feeding in children with neurological impairment: Engaging effectively with families. Paediatrics & Child Health, 23(3), 209–213. https://doi.org/https://doi.org/10.1093/pch/pxx193
   PubMed Web of Science ®Google Scholar
• Mårtensson, U., Jenholt Nolbris, M., Mellgren, K., Wijk, H., & Nilsson, S. (2021). The five aspect meal model as a conceptual framework for children with a gastrostomy tube in paediatric care. Scandinavian Journal of Caring Sciences, 2021 Jan 29. https://doi.org/https://doi.org/10.1111/scs.12957
   Google Scholar
• Matson, K. L., Johnson, P. N., Van Tran Horton, E. R., & Sterner-Allison, J. (2019). Opioid Use in Children. The Journal of Pediatric Pharmacology and Therapeutics : JPPT : The Official Journal of PPAG, 24(1), 1. https://doi.org/https://doi.org/10.5863/1551-6776-24.1.72
   Google Scholar
• Merriam, S. B. (1998). Qualitative research and case study applications in education. Jossey-Bass.
   Google Scholar
• Nelson, K. E., Lacombe–Duncan, A., Cohen, E., Nicholas, D. B., Rosella, L. C., Guttman, A., & Mahant, S. (2015). Family experiences with feeding tubes in neurologic impairment: A systematic review. Paediatrics, 136(1), 140–151. https://doi.org/https://doi.org/10.1542/peds.2014-4162
   PubMed Web of Science ®Google Scholar
• Nilsson, S., Björkman, B., Almqvist, A. –. L., Almqvist, L., Björk–Willén, P., Donohue, D., Enskär, K., Granlund, M., Huus, K., & Hvit, S. (2015). Children’s voices—Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation, 18(3), 162–168. https://doi.org/https://doi.org/10.3109/17518423.2013.801529
   PubMed Web of Science ®Google Scholar
• Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine & Child Neurology, 39(4), 214–223. https://doi.org/https://doi.org/10.1111/j.1469-8749.1997.tb07414.x
   PubMed Web of Science ®Google Scholar
• Peck, J., Mills, K., Dey, A., Nguyen, A. T. H., Amankwah, E. K., Wilsey, A., Swan, E., Son, S., Karjoo, S., McClenathan, D., & Wilsey, M. (2020). Comparison of tolerance and complication rates between early and delayed feeding after percutaneous endoscopic gastrostomy placement in children. Journal of Pediatric Gastroenterology & Nutrition, 70(1), 55–58. https://doi.org/https://doi.org/10.1097/MPG.0000000000002503
   Web of Science ®Google Scholar
• Polit, D. F., & Beck, C. T. (2017). Nursing Research: Generating and assessing evidence for nursing practice (Tenth ed.). Wolters Kluwer.
   Google Scholar
• Quitadamo, P., Thapar, N., Staiano, A., & Borrelli, O. (2016). Gastrointestinal and nutritional problems in neurologically impaired children. European Journal of Paediatric Neurology, 20(6), 810–815. https://doi.org/https://doi.org/10.1016/j.ejpn.2016.05.019
   Web of Science ®Google Scholar
• Remijn, L., Van Den Engel-hoek, L., Satink, T., De Swart, B. J. M., & Nijhuis–van Der Sanden, M. W. G. (2019). ‘Everyone sees you sitting there struggling with your food’: Experiences of adolescents and young adults with cerebral palsy. Disability and Rehabilitation, 41(16), 1898–1905. https://doi.org/https://doi.org/10.1080/09638288.2018.1451923
   PubMed Web of Science ®Google Scholar
• Risjord, M. (2019). Middle-range theories as models: New criteria for analysis and evaluation. Nursing Philosophy, 20(1), e12225. https://doi.org/https://doi.org/10.1111/nup.12225
   Web of Science ®Google Scholar
• Ron, A. G., Toboso, R. M. G., Gascón, M. B., De Santos, M. T., Vecino, R., & Pinedo, A. B. (2020). Nutritional status and prevalence of dysphagia in cerebral palsy: Usefulness of the eating and drinking ability classification system scale and correlation with the degree of motor impairment according to the gross motor function classification system. Neurologia, S0213-4853(20), 30044–x. 18. https://doi.org/https://doi.org/10.1016/j.nrl.2019.12.006
   Google Scholar
• Russell, M., Jewell, V., Poskey, A. G., & Russell, A. (2018). Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study. Australian Occupational Therapy Journal, 65(1), 25–34. https://doi.org/https://doi.org/10.1111/1440-1630.12418
   Web of Science ®Google Scholar
• Scarpato, E., Staiano, A., Molteni, M., Terrone, G., Mazzocchi, A., & Agostoni, C. (2017). Nutritional assessment and intervention in children with cerebral palsy: A practical approach. International Journal of Food Sciences and Nutrition, 68(6), 763–770. https://doi.org/https://doi.org/10.1080/09637486.2017.1289502
   PubMed Web of Science ®Google Scholar
• Sellers, D., Mandy, A., Pennington, L., Hankins, M., & Morris, C. (2014). Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy. Developmental Medicine & Child Neurology, 56(3), 245–251. https://doi.org/https://doi.org/10.1111/dmcn.12352
   PubMed Web of Science ®Google Scholar
• Sewell, M. D., Eastwood, D. M., & Wimalasundera, N. (2014). Managing common symptoms of cerebral palsy in children. BMJ (Clinical Research Ed.), 2014 Sep 25;349:g5474. https://doi.org/https://doi.org/10.1136/bmj.g5474
   Google Scholar
• Söderbäck, M., Coyne, I., & Harder, M. (2011). The importance of including both a child perspective and the child’s perspective within health care settings to provide truly child-centred care. Journal of Child Health Care, 15(2), 99–106. https://doi.org/https://doi.org/10.1177/1367493510397624
   PubMed Web of Science ®Google Scholar
• Thorne, S., Kirkham, S., & O’Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1–11. https://doi.org/https://doi.org/10.1177/160940690400300101
   Google Scholar
• Thorne, S. E. (2016). Interpretive description: Qualitative research for applied practice. Routledge.
   Google Scholar
• UNICEF. Retrieved May 14, 2021, from https://www.unicef.org/child-rights-convention/convention-text
   Google Scholar
• World Health Organization (WHO). Retrieved May 14, 2021, from https://www.who.int/about/who-we-are/constitution
   Google Scholar
• World Health Organization Geneva. Towards a Common Language for Functioning, Disability and Health ICF. World Health Organization. 2002. Retrieved May 14, 2021, from https://www.who.int/classifications/icf/icfbeginnersguide.pdf
   Google Scholar
• Yazan, B. (2015). Three approaches to case study methods in education: Yin, Merriam, and Stake. The Qualitative Report, 20(2), 134–152. ISBN 1052-0147. DOI: https://doi.org/10.46743/2160-3715/2015.2102
   Web of Science ®Google Scholar