Transitioning from child to adult cleft lip and palate services in the United Kingdom: Are the NICE Guidelines reflected in young adults’ experiences?

References

• Acuña Mora, M., Saarijärvi, M., Sparud-Lundin, C., Moons, P., & Bratt, E. L. (2020). Empowering Young Persons with Congenital Heart Disease: Using Intervention Mapping to Develop a Transition Program - The STEPSTONES Project. Journal of Pediatric Nursing, 50, e8–e17. https://doi.org/10.1016/j.pedn.2019.09.021
   PubMed Web of Science ®Google Scholar
• Ambresin, A. E., Bennett, K., Patton, G. C., Sanci, L. A., & Sawyer, S. M. (2013). Assessment of youth-friendly health care: A systematic review of indicators drawn from young people’s perspectives. Journal of Adolescent Health, 52(6), 670–681. https://doi.org/10.1016/j.jadohealth.2012.12.014
   PubMed Web of Science ®Google Scholar
• Archibald, S.-J., & Ashford, J. (2018). Qualitative investigation of young people’s views of a diabetes transition service. Diabetes on the Net. https://diabetesonthenet.com/diabetes-care-children-young-people/qualitative-investigation-young-peoples-views/
   Google Scholar
• Ardouin, K., Drake, D., Popat, S., & Stock, N. M. (2021). Treatment Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom. Cleft Palate-Craniofacial Journal, 58(7), 864–871. https://doi.org/10.1177/1055665620968342
   PubMed Web of Science ®Google Scholar
• Ardouin, K., Hare, J., & Stock, N. M. (2020). Emotional Well-Being in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom. Cleft Palate-Craniofacial Journal, 57(7), 877–885. https://doi.org/10.1177/1055665619896681
   PubMed Web of Science ®Google Scholar
• Beacham, B. L., & Deatrick, J. A. (2013). Health Care Autonomy in Children with Chronic Conditions. Implications for Self-Care and Family Management. Nursing Clinics of North America, 48(2), 305–317. https://doi.org/10.1016/j.cnur.2013.01.010
   PubMed Web of Science ®Google Scholar
• Betz, C. L., & Redcay, G. (2005). Dimensions of the transition service coordinator role. Journal for Specialists in Pediatric Nursing : JSPN, 10(2), 49–59. 10.1111/j.1744-6155.2005.00010.x
   PubMedGoogle Scholar
• Boland, L., Graham, I. D., Légaré, F., Lewis, K., Jull, J., Shephard, A., Lawson, M. L., Davis, A., Yameogo, A., & Stacey, D. (2019). Barriers and facilitators of pediatric shared decision-making: A systematic review. Implementation Science, 14(1). https://doi.org/10.1186/s13012-018-0851-5
   Google Scholar
• Boss, E. F., Mehta, N., Nagarajan, N., Links, A., Benke, J. R., Berger, Z., Espinel, A., Meier, J., & Lipstein, E. A. (2016). Shared decision making and choice for elective surgical care: A systematic review. Otolaryngology - Head and Neck Surgery (United States), 154(3), 405–420. https://doi.org/10.1177/0194599815620558
   Google Scholar
• Butalia, S., McGuire, K. A., Dyjur, D., Mercer, J., & Pacaud, D. (2020). Youth with diabetes and their parents’ perspectives on transition care from pediatric to adult diabetes care services: A qualitative study. Health Science Reports, 3(3), e181. https://doi.org/10.1002/hsr2.181
   PubMedGoogle Scholar
• Cadogan, J., Setters, C., Norris, J., & Downey, S. (2021). Improving the quality of cleft care before, during and after attendance at multi-disciplinary cleft clinics. Craniofacial Society of Great Britain and Ireland.
   Google Scholar
• Costa, B., Ardouin, K., & Stock, N. M. (2021). Factors Associated With Psychological Adjustment in Adults With Cleft Lip and/or Palate: Findings From a National Survey in the United Kingdom. Cleft Palate-Craniofacial Journal, 59(4), S7–S17. https://doi.org/10.1177/10556656211028494
   PubMed Web of Science ®Google Scholar
• Dixon, M. J., Marazita, M. L., Beaty, T. H., & Murray, J. C. (2011). Cleft lip and palate: Understanding genetic and environmental influences. Nature Reviews Genetics, 12(3), 167–178. https://doi.org/10.1038/nrg2933
   PubMed Web of Science ®Google Scholar
• Fair, C. D., Albright, J., Lawrence, A., & Gatto, A. (2012). “The pediatric social worker really shepherds them through the process”: Care team members’ roles in transitioning adolescents and young adults with HIV to adult care. Vulnerable Children and Youth Studies, 7(4), 338–346. https://doi.org/10.1080/17450128.2012.713533
   Google Scholar
• General Medical Council. (2018). 0–18 Making Decisions:. https://www.gmc-uk.org/-/media/documents/0_18_years_english_0418pdf_48903188.pdf?la=en&hash=3092448DA3A5249B297C4C5EAEF1AD7549EEB5C7
   Google Scholar
• Haze, K. A., & Lynaugh, J. (2013). Building patient relationships: A smartphone application supporting communication between teenagers with asthma and the RN care coordinator. Computers, Informatics, Nursing. 31(6), 266–271. https://doi.org/10.1097/NXN.0b013e318295e5ba
   PubMed Web of Science ®Google Scholar
• Hodgkinson, P. D., Brown, S., Duncan, D., Grant, C., McNaughton, A., Thomas, P., & Mattick, C. R. (2005). Management of children with cleft lip and palate: A review describing the application of multidisciplinary team working in this condition based upon the experiences of a regional cleft lip and palate centre in the United Kingdom. Fetal and Maternal Medicine Review, 16(1), 1–27. https://doi.org/10.1017/S0965539505001452
   Google Scholar
• Jordan, A., Joseph-Williams, N., Edwards, A., Holland-Hart, D., & Wood, F. (2019). “I’d Like to Have More of a Say Because It’s My Body”: Adolescents’ Perceptions Around Barriers and Facilitators to Shared Decision-Making. Journal of Adolescent Health, 65(5), 633–642. https://doi.org/10.1016/j.jadohealth.2019.05.024
   PubMed Web of Science ®Google Scholar
• Martin, S., Slevin, E., & Hill, C. (2020). The Cleft Nurse Specialist: A Key Building Block in the Cleft Multidisciplinary Team. Cleft Palate-Craniofacial Journal, 57(12), 1351–1356. https://doi.org/10.1177/1055665620947607
   PubMed Web of Science ®Google Scholar
• Medina, J., Fitzsimons, K. J., Russell, C., Wahedally, H., Park, M. H., & van der Meulen, J. H. (2020). Cleft Registry and Audit NEtwork Database: Annual Report 2020. England: Royal College of Surgeons Clinical Effectiveness Unit. https://www.crane-database.org.uk/content/uploads/2020/12/CRANE-2020-Annual-Report_V1.pdf
   Google Scholar
• Moi, A. L., Gjengedal, H., Lybak, K, & Vindenes, H. (2020). “I smile, but Without Showing My Teeth”: The Lived Experience of Cleft, Lip, and Palate in Adults. Cleft Palate-Craniofacial Journal, 57(7), 799–807. https://doi.org/10.1177/1055665620922096
   PubMed Web of Science ®Google Scholar
• NHS. (2019). Cleft lip and Palate: Overview. https://www.nhs.uk/conditions/cleft-lip-and-palate/
   Google Scholar
• NHS Commissioning Board. (2019). NHS Standard Contract for Cleft Lip and/or Palate Services including non-cleft Velopharyngeal Dysfunction (VPD) (all ages). https://www.england.nhs.uk/wp-content/uploads/2018/08/Cleft-lip-and-or-palate-services-including-non-cleft-velopharyngeal-dysfunction-all-ages.pdf
   Google Scholar
• NICE. (2016). Transition from children’s to adults’ services for young people using health or social care services. https://www.nice.org.uk/guidance/ng43
   Google Scholar
• Patel, P. J., Stinson, R., Kenyon, C., & Apter, A. J. (2019). Assessing Transition Readiness in Adolescents and Young Adults with Asthma on Omalizumab. Journal of Allergy and Clinical Immunology, 143(2), AB92. https://doi.org/10.1016/j.jaci.2018.12.283
   Web of Science ®Google Scholar
• Rearick, E. (2007). Enhancing success in transition service coordinators: Use of transformational leadership. Professional Case Management, 12(5), 283–287. https://doi.org/10.1097/01.PCAMA.0000291427.99728.4b
   PubMedGoogle Scholar
• Rideout, K. (2007). Evaluation of a PNP care coordinator model for hospitalized children, adolescents, and young adults with cystic fibrosis. Pediatric Nursing, 33(1), 29-35; quiz 35–6. Accessed 27 July 2021. https://pubmed.ncbi.nlm.nih.gov/17410998/
   Google Scholar
• Searle, A., Neville, P., Ryan, S., & Waylen, A. (2018). The Role of the Clinical Nurse Specialist from the Perspective of Parents of Children Born with Cleft Lip and/or Palate in the United Kingdom: A Qualitative Study. Clinical Nurse Specialist, 32(3), 121–128. https://doi.org/10.1097/NUR.0000000000000371
   PubMed Web of Science ®Google Scholar
• Stock, N. M., Feragen, K. B., & Rumsey, N. (2015). “It doesn’t all just stop at 18”: Psychological adjustment and support needs of adults born with cleft lip and/or palate. Cleft Palate-Craniofacial Journal, 52(5), 543–554. https://doi.org/10.1597/14-178
   PubMed Web of Science ®Google Scholar
• Stock, N. M., Harcourt, D., Rumsey, N., Parnell, J., Costa, B., Guest, E., Zucchelli, F., Sharratt, N. D., Sharratt, N. D., Heath, J., Nankivell, D., Martindale, A., Ridley, M., Ahmed, A., Hamlet, C., Slater, A., Williamson, H., Stock, N. M., & Harcourt, D., … Sharratt, N. D. (2018). Falling through the gap: Dental treatment experiences of patients affected by cleft lip and/or palate. British Dental Journal, 225(3), 218–222. https://doi.org/10.1038/sj.bdj.2018.542
   PubMed Web of Science ®Google Scholar
• The Medical Protection Society. (2020). Consent - Children and young people - England. https://www.medicalprotection.org/uk/articles/eng-consent-children-and-young-people
   Google Scholar
• Transition and Patient Empowerment, & NHS. (2018). Ready Steady Go: Hello to adult services. NHS. https://www.readysteadygo.net/hello-to-adult-services.html
   Google Scholar
• Vallino, L. D., & Louw, B. (2017). We’ve Got Some Growing Up to Do: An Evidence-Based Service Delivery Model for the Transition of Care for the Young Adult with Cleft Lip and Palate. Perspectives of the ASHA Special Interest Groups, 2(5), 4–17. https://doi.org/10.1044/persp2.sig5.4
   Google Scholar
• Voorheis, P., Wilson, M. G., & Scallan, E. (2020). Identifying Features of Approaches to Supporting Transitions from Child to Adult Care for young people with Special Healthcare Needs in Canada. McMaster Health Forum. Accessed 27 July 2021. https://canchild.ca/system/tenon/assets/attachments/000/003/208/original/supporting-transitions-rapid-synthesis.pdf
   Google Scholar
• Withers, A. L. (2012). Management issues for adolescents with cystic fibrosis. Pulmonary Medicine, 2012(134132), 1–10. https://doi.org/10.1155/2012/134132
   Google Scholar
• Withers, A. L., & Green, R. (2019). Transition for adolescents and young adults with asthma. Frontiers in Pediatrics, 7(July), 301. https://doi.org/10.3389/fped.2019.00301
   PubMedGoogle Scholar
• Wogden, F., Norman, A., & Dibben, L. (2019). Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making. Cleft Palate-Craniofacial Journal, 56(9), 1220–1229. https://doi.org/10.1177/1055665619848256
   PubMed Web of Science ®Google Scholar