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Parental experience of hypoglossal nerve stimulator implantation in adolescents with Down Syndrome and obstructive sleep apnea

Published:October 31, 2022DOI:https://doi.org/10.1016/j.pedn.2022.09.001

      Highlights

      • HNS offers an alternative to other invasive treatments to parents desperate about the health of their adolescent with DS/OSA.
      • Parents of adolescents with DS/OSA seek out specialist and other parents through referral and social media.
      • Parents share observations about changes in their adolescents sleep patterns, speech, and behavior to assess results of HNS.
      • Nurses play a role in making parents aware of, educate and support their decision for HNS in their adolescent with DS/OSA.

      Abstract

      Purpose

      The purpose of this study is to explore the experience of parents in deciding whether to participate in a clinical trial of the insertion of the Hypoglossal Nerve Stimulator (HNS) to treat their adolescent with Down Syndrome (DS) and Obstructive Sleep Apnea (OSA).

      Design and methods

      A qualitative descriptive design with interviews was used to gather parental experiences from those who consented to HNS for their adolescent with DS and OSA. Interviews were conducted, audiotaped, and transcribed. Basic content analysis was followed to interpret the data. Using a process of data debriefing/engagement, codes were generated, and field/reflective notes were used to assure trustworthiness of the data.

      Results

      Parents, 13 mothers/2 fathers, participated. Three themes were identified: Parents experience desperation about acceptance of standard of care for their adolescent with DS and OSA. This desperation led parents to seek information/insights from social media and they came to rely on those sites to explore options, ultimately leading them to HNS clinical trial. Finally, parents had a desire to share experience with HNS implantation.

      Conclusions

      Parents described being desperate at acceptance of standards of care for OSA. They shifted reliance on experts and parents by searching social media pages to explore options for treatment of OSA. Parents wished to share experiences with the HNS implantation.

      Practice implications

      Nurses play a role in preparing for the HNS by instructing/educating parents. Nurses can identify supportive social media sites for parents during the HNS decision and suggest ways to measure outcomes of HNS.

      Keywords

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      References

        • Boss E.F.
        • Links A.R.
        • Saxton R.
        • Cheng T.L.
        • Beach M.C.
        Parent experience of care and decision making for children who snore.
        JAMA Otolaryngology. Head & Neck Surgery. 2017; 143: 218-225
        • Brooks L.J.
        • Olsen M.N.
        • Bacevice A.M.
        • Beebe A.
        • Konstantinopoulou S.
        • Taylor H.G.
        Relationship between sleep, sleep apnea, and neuropsychological function in children with Down syndrome.
        Sleep & Breathing. 2015; 19: 197-204
        • Bull M.J.
        • Committee on Genetics
        Health supervision for children with Down Syndrome.
        Pediatrics. 2011; 128: 393-406
        • Caloway C.L.
        • Diercks G.R.
        • Keamy D.
        • de Guzman V.
        • Soose R.
        • Raol N.
        • Hartnick C.J.
        Update on hypoglossal nerve stimulation in children with Down Syndrome and obstructive sleep apnea.
        The Laryngoscope. 2020; 130: E263-E267
        • Carnett A.
        • Hansen S.G.
        • McLay L.M.
        • Neely L.
        • Lang R.
        Quantitative analysis of behavioural interventions to treat sleep problems in children with autism.
        Developmental Neurorehabilitation. 2019; 20: 1014
        • Currie G.
        • Szabo J.
        Social isolation and exclusion: The parents experience of caring for children with rare neurodevelopmental disorders.
        International Journal of Qualitative Studies of Health and Well-Being. 2020; 15
        • De Graaf G.
        • Buckley F.
        • Skotko B.G.
        Estimation of the number of people with Down syndrome in the United States.
        Genetics in Medicine. 2017; 19: 439-447
        • DeHoff B.A.
        • Staten L.K.
        • Rodgers R.C.
        • Denne S.C.
        The role of online social support in supporting and educating parents of young children with special health care needs in the United States: A scoping review.
        Journal of Medical Internet Research. 2016; 18e333
        • Diercks Gillian
        • Keamy Donald
        • Kinane Thomas Bernard
        • Skotko Brian
        • Schwartz Allison
        • Grealish Ellen
        • Hartnick Christopher J
        Hypoglossal nerve stimulator implantation in an adolescent with Down Syndrome and sleep apnea.
        Pediatrics. 2016; 137 (In this issue): e20153663
        • Diercks G.R.
        • Wentland C.
        • Keamy D.
        • Kinane T.B.
        • Skotko B.
        • de Guzman V.
        • Hartnick C.J.
        Hypoglossal nerve stimulator implantation in adolescents with Down syndrome and sleep apnea.
        JAMA Otolaryngology. Head & Neck Surgery. 2017; 144 (37-a42)
        • Diskin C.
        • McVeigh T.P.
        • Cox D.W.
        Sleep disordered breathing in children with down syndrome in the Republic of Ireland.
        American Journal Medical Genetics Association. 2020; 182: 2847-2856
        • Eastwood P.R.
        • Barnes M.
        • Walsh J.H.
        • Maddison K.J.
        • Hee G.
        • Schwartz A.R.
        • Hillman D.R.
        Treating obstructive sleep apnea with hypoglossal nerve stimulation.
        Sleep. 2011; 34: 1479-1486
        • Frey E.
        • Bonfiglioli C.
        • Brunner M.
        • Frawley J.
        Parents’ use of social media as a health information source for their children: A scoping review.
        Academic Pediatrics. 2022; 22: 526-539
        • Hoffmire C.A.
        • Magyar C.I.
        • Connolly H.V.
        • Fernandez D.
        • van Wijingaarden E.
        High prevalence of sleep disorders and associated comorbidities in a community sample of children with Down Syndrome.
        Journal of Clinical Sleep Medicine. 2014; 10: 411-419
        • Hsieh A.
        • Gilad A.
        • Wong K.
        • Cohen M.
        • Levi J.
        Obstructive sleep apnea in children with Down Syndrome: Screening and effect of guidelines.
        Clinical Pediatrics. 2019; 58: 993-999
        • Hsieh H.-F.
        • Shannon S.E.
        Three approaches to qualitative content analysis.
        Qualitative Health Research. 2005; 15: 1277-1288
        • Jaks R.
        • Baumann I.
        • Juvalta S.
        • Dratva J.
        Parental digital health information seeking behavior in Switzerland: A cross-sectional study.
        BMC Public Health. 2019; 19: 225
        • King J.S.
        • Moulton B.W.
        Rethinking informed consent: The case for shared medical decision making.
        American Journal of Law & Medicine. 2006; 32: 429-501
        • Lincoln G.
        • Guba E.G.
        Naturalistic inquiry.
        Sage, Newbury Park CA1985
        • Loane M.
        • Morris J.K.
        • Addor M.C.
        • Arriola L.
        • Budd J.
        • Doray B.
        • Dolk H.
        Twenty-year trend in the prevalence of Down syndrome and other trisomies in Europe: Impact of maternal age and prenatal screening.
        European Journal of Human Genetics. 2013; 21: 27-33
        • Maris M.
        • Verhulst S.
        • Wojciechowski M.
        • Van de Heyning P.
        • Boudewyns A.
        Prevalence of obstructive sleep apnea in children with Down syndrome.
        SLEEP. 2016; 39: 699-704
        • Nadel L.
        Down’s Syndrome: A genetic disorder in biobehavioral perspective.
        Genes, Brain, and Behavior. 2003; 2: 156-166
        • Nation J.
        • Brigger M.
        The efficacy of adenotonsillectomy for obstructive sleep apnea in children with Down Syndrome: A systematic review.
        Otolaryngology and Head and Neck Surgery. 2017; 157: 401-408
        • Ni She R.
        • Filan P.M.
        Trisomy 21 – incidence and outcomes in the first year: In Ireland today.
        Irish Medical Journal. 2014; 107: 248-249
        • O’Neill M.E.
        • Ryan A.
        • Kwon S.
        • Binns H.J.
        Evaluation of pediatrician adherence to the American Academy of Pediatrics health supervision guidelines for Down Syndrome.
        American Journal of Intellectual and Developmental Disabilities. 2018; 123: 387-398
        • Owens J.A.
        • Rosen C.L.
        • Mindell J.A.
        • Kirchner H.L.
        Use of pharmacotherapy for insomnia in child psychiatric practice: A national survey.
        Sleep Medicine. 2010; 11: 692-700
        • Presson A.P.
        • Partyka G.
        • Jensen K.M.
        • Devine O.J.
        • Rasmussen S.A.
        • McCabe L.L.
        • McCabe E.R.
        Current estimate of Down Syndrome population prevalence in the United States.
        Journal of Pediatrics. 2013; 163 (Epub 2013 Jul 23): 1163-1168
        • Sandelowski M.
        Whatever happened to qualitative description?.
        Research in Nursing and Health. 2000; 23 (424–340)
        • Schwartz A.R.
        • Bennett M.L.
        • Smith P.L.
        • De Backer W.
        • Hedner J.
        • Boudewyns A.
        • Eisele D.W.
        Therapeutic electrical stimulation of the hypoglossal nerve in obstructive sleep apnea.
        Archives of Otolaryngology – Head & Neck Surgery. 2001; 127: 1216-1223
        • Shott S.R.
        • Amin R.
        • Chini B.
        • Heubi C.
        • Hotze S.
        • Akers R.
        Obstructive sleep apnea: Should all children with down syndrome be tested?.
        Archives of Head and Neck Surgery. 2006; 132: 432-436
        • Strollo P.J.
        • Soose R.J.
        • Maurer J.T.
        • DeVries N.
        • Cornelius J.
        • Froymovich, O…. Strohl, K.P.
        Upper-airway stimulation for obstructive sleep apnea.
        New England Journal of Medicine. 2014; 370: 139-149
        • Sullivan-Bolyai S.
        • Lee M.M.
        Parent mentor perspectives on providing social support to empower parents.
        The Diabetes Educator. 2011; 37: 35-43
        • Yu P.K.
        • Stenerson M.
        • Ishman S.L.
        • Shott S.R.
        • Raol N.
        • Soose R.J.
        • Hartnick C.J.
        Evaluation of upper airway stimulation for adolescents with down syndrome and obstructive sleep apnea.
        JAMA Otolaryngology. Head & Neck Surgery. 2022; 148: 522-528