Nurses’ Challenges of Caring for Children with Intellectual Disabilities in Acute Care Settings

Yıl 2023, , 1 - 8, 14.03.2023

Ayfer Aydın Aslı Akdeniz Kudubeş Eyşan Hanzade Umaç Fahriye Oflaz

https://doi.org/10.26650/CURARE.2023.001

Öz

Objective: The purpose of this study is to better understand the challenges of nurses who care for children with intellectual disabilities (ID) in acute care settings. Materials and Methods: This is a descriptive and cross-sectional study that included 94 nurses working at pediatric wards who agreed to participate in the study. The researcher-designed, expert-evaluated survey assessed participants’ demographics and challenges while caring for children with ID. Data analysis involved descriptive statistics, correlations, and multiple linear regression analysis to determine the factors that affect the experiences of nurses who provide care for children with ID. Results: The nurses reported that they encounter various challenges while caring for a child with an ID in the hospital. These are patient and family-related challenges, nurses-related challenges, health professionals, and health system-related challenges. Conclusion: Communication and handling challenging behaviors of children with ID were specified as the most important issues. The nurses also reported that they did not have enough knowledge and education about caring for children with ID. Understanding the challenges and experiences of nurses are important for the development of services for children with intellectual disabilities at the hospital. There is a need for training, institutional arrangements, and policies to increase the quality of care for children with ID.

Anahtar Kelimeler

Children, intellectual disabilities, nursing, hospital, acute care

Kaynakça

• 1. Balcı S, Kızıl H, Savaşer S, Dur Ş, Mutlu B. Zihinsel engelli çocuğu olan ailelerin yaşadığı güçlüklerin ve aile yükünün belirlenmesi. Psikiyatri Hemşireliği Dergisi 2019;10(2):124-30. doi: 10.14744/ phd.2018.05657. google scholar
• 2. Centers for Disease Control and Prevention (CDC). Key Findings: Developmental Disabilities Prevalence Trends 2018. Available from: https://www.cdc.gov/ncbddd/. google scholar
• 3. Lindgren S, Lauer E, Momany E, Cope T, Royer J, Cogan L, et al. Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities. The Journal of Pediatrics 2021;229:259-66. doi: 10.1016/j.jpeds.2020.08.084. google scholar
• 4. Bebbington A, Glasson E, Bourke J, de Klerk N, Leonard H. Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983-1999: a populationbased cohort study. BMJ Open 2013;3(2). doi: 10.1136/ bmjopen-2012-002356. google scholar
• 5. Gok S, Ozturk SN, Karaca R, İlbars S, Nogay NH. Evaluation of sleep disturbances, gastrointestinal problems and eating behaviors in Turkish children with autistic disorder and PDD-NOS. Advances in Autism 2021;7(2):101-13. doi: 10.1108/AIA-12-2019-0049. google scholar
• 6. Şenay İ, Fatma Kübra. Otizm spektrum bozukluğunda beslenme. Turkish Journal Of Family Medicine And Primary Care 2018;12(2):117-25. doi: 10.21763/tjfmpc.432543. google scholar
• 7. Wang J, Gao Y, Kwok HH, Huang WY, Li S, Li L. Children with intellectual disability are vulnerable to overweight and obesity: A cross-sectional study among Chinese children. Childhood Obesity 2018;14(5):316-26. doi: 10.1089/chi.2018.0015. google scholar
• 8. Connor EO, Corcoran Y. Caring for a child with a life limiting condition: The experiences of nurses in an intellectual disability service provider. Journal of Intellectual Disabilities 2022;26(4):938-53. doi: 10.1177/17446295211018588. google scholar
• 9. Appelgren M, Bahtsevani C, Persson K, Borglin G. Nurses’ experiences of caring for patients with intellectual developmental disorders: a systematic review using a metaethnographic approach. BMC Nursing 2018;17:51. doi: 10.1186/ s12912-018-0316-9. google scholar
• 10. Brown FJ, Guvenir J. The experiences of children with learning disablilities, their carers and staff during a hospital admission. British Journal of Learning Disabilities 2009;37(2):110-5. doi: 10.1111/j.1468-3156.2008.00522.x. google scholar
• 11. Johnson NL, Lashley J, Stonek AV, Bonjour A. Children with developmental disabilities at a pediatric hospital: staff education to prevent and manage challenging behaviors. Journal of Pediatric Nursing 2012;27(6):742-9. doi: 10.1016/j. pedn.2012.02.009. google scholar
• 12. Ong N, McCleod E, Nicholls LE, Fairbairn N, Tomsic G, Lord B, et al. Attitudes of healthcare staff in the treatment of children and adolescents with intellectual disability: A brief report. Journal of Intellectual & Developmental Disability 2017;42(3):295-300. doi: 10.3109/13668250.2016.1236368. google scholar
• 13. Polit DF, Beck CT, Owen SV. Is the CVI an acceptable indicator of content validity? Appraisal and recommendations. Research in Nursing & Health 2007;30(4):459-67. Epub 2007/07/27. doi: 10.1002/nur.20199. PubMed PMID: 17654487. google scholar
• 14. Aston M, Breau L, MacLeod E. Diagnoses, labels and stereotypes: Supporting children with intellectual disabilities in the hospital. Journal of Intellectual Disabilities 2014;18(4):291-304. doi: 10.1177/1744629514552151. google scholar
• 15. Sharkey S, Lloyd C, Tomlinson R, Thomas E, Martin A, Logan S, et al. Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study. Health Expectations 2016;19(3):738-50. doi: 10.1111/hex.12254. google scholar
• 16. Morris R, Greenblatt A, Saini M. Healthcare Providers’ Experiences with Autism: A Scoping Review. Journal of Autism and Developmental Disorders 2019;49(6):2374-88. doi: 10.1007/ s10803- 019-03912-6. google scholar
• 17. Oulton K, Gibson F, Carr L, Hassiotis A, Jewitt C, Kenten C, et al. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Services Research. 2018;18(1):203. doi: 10.1186/s12913-018-2970-8. google scholar
• 18. Mahoney WJ, Villacrusis M, Sompolski M, Iwanski B, Charman A, Hammond C, et al. Nursing care for pediatric patients with autism spectrum disorders: A cross-sectional survey of perceptions and strategies. Journal for Specialists in Pediatric Nursing 2021;26(4):e12332. doi: 10.1111/jspn.12332. google scholar
• 19. Shilling V, Edwards V, Rogers M, Morris C. The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals. Journal for Specialists in Pediatric Nursing 2012;38(6):778-88. doi: 10.1111/j.1365-2214.2012.01372.x. google scholar
• 20. Lewis P, Wilson NJ, Jaques H, O’Reilly K, Wiese M. A qualitative study of nurses’ perspectives of caring for children with intellectual disability and their families in a paediatric acute care setting. Journal of Child Health Care 2019;23(4):639-51. doi: 10.1177/1367493519867234. google scholar
• 21. Cervasio K, Fatata-Hall K. Attitudes of nurses toward children with disabilities: the attitudes of nursing students toward children with disabilities: an experimental design. International Journal of Physical Medicine and Rehabilitation 2013;1(5):1-15. doi: 10.4172/2329-9096.1000140. google scholar
• 22. Hemsley B, Balandin S, Worrall L. Nursing the patient with complex communication needs: time as a barrier and a facilitator to successful communication in hospital. Journal of Advanced Nursing 2012;68(1):116-26. doi: 10.1111/j.1365-2648.2011.05722.x. google scholar
• 23. Lewis P, Gaffney RJ, Wilson NJ. A narrative review of acute care nurses’ experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers. Journal of Clinical Nursing 2017;26(11-12):1473-84. doi: 10.1111/jocn.13512. google scholar
• 24. Glasper EAE-i-c. Optimising the Care of Children with Intellectual Disabilities in Hospital. Comprehensive Child and Adolescent Nursing 2017;40(2):63-7. doi: 10.1080/24694193.2017.1309827. google scholar
• 25. Ndubaku U. Barriers to providing quality care for pediatric patients with autism spectrum disorder as identified by baccalaureate prepared registered nurses: a basis to enhance professional practice. 2018. doi: 10.31979/etd.9ck7-c9dr. google scholar