Yıl: 2021 Cilt: 32 Sayı: 3 Sayfa Aralığı: 93 - 99 Metin Dili: İngilizce DOI: 10.4274/jtss.galenos.2021.65365 İndeks Tarihi: 21-10-2021

WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?

Öz:
Objective: The aim of this study was to determine the information needs of individuals with adolescent idiopathic scoliosis (AIS) and theirfamilies when the disease was first diagnosed.Materials and Methods: A total of 117 patients with AIS and their parents volunteered to participate in this study. A survey developed specificallyto assess the information needs of AIS patients and their families was sent by e-mail. Of the AIS patients, 59.8% were aged >16 years andcompleted the survey alone, and 40.2% were aged <16 years and they completed the survey together with their parents.Results: The results of this study demonstrated that in the initial diagnosis, scoliosis could be observed even if the angle was <20°. Generally,scoliosis was first noticed by the child’s mother. As expected, at the time of the initial diagnosis, the children diagnosed as having scoliosis wereupset and confused and their parents also felt upset and worried. The information most needed was reported to be answers to the questions of“Will it get better, what are the causes of scoliosis?”, “What is scoliosis and what are the possible treatment options?”, and the least frequentlyasked question was “Will surgery be needed?”.Conclusion: Clear, accurate, complete, and personalized information is required by patients and their families. This information is essential inenabling patients to make major decisions and to take ownership and responsibility for the decision. Involvement in decision-making helps toimprove compliance with treatment and finally also improves satisfaction with the agreed treatment method used.
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  • 1. Weiss HR, Lehnert-Schroth C, Moramarco M & Moramarco K, Schroth therapy: advancements in conservative scoliosis treatment. Saarbruecken: Lambert Academic Publishing (LAP); 2018.
  • 2. Weiss HR: Befundgerechte physiotherapie bei skoliose (International edition) (3th ed) Munich: Pflaum; 2010.
  • 3. Moramarco M, Borsysov M, Ng SY, Weiss HR. Schroth’s Textbook of scoliosis and other spinal deformities. Newcastle UK: Cambridge Scholars Publishing; 2020.
  • 4. Horne JP, Flannery R, Usman S. Adolescent idiopathic scoliosis: diagnosis and management. Am Fam Physician. 2014;89:193-8.
  • 5. Berdishevsky H, Lebel VA, Bettany-Saltikov J, Rigo M, Lebel A, Hennes A, et al. Physiotherapy scoliosis-specific exercises - a comprehensive review of seven major schools. Scoliosis Spinal Disord. 2016;11:20.
  • 6. Bettany-Saltikov J, Parent E, Romano M, Villagrasa M, Negrini S. Physiotherapeutic scoliosis-specific exercises for adolescents with idiopathic scoliosis. Eur J Phys Rehabil Med. 2014;50:111-21.
  • 7. Schwieger T, Campo S, Steuber KR, Weinstein SL, Ashida S. An exploration of information exchange by adolescents and parents participating in adolescent idiopathic scoliosis online support groups. Scoliosis Spinal Disord. 2016;11:22.
  • 8. Leonard KJ, Casselman M, Wiljer D. Who will demand access to their personal health record? A focus on the users of health services and what they want. Healthc Q. 2008;11:92-6.
  • 9. Beall MS, Golladay GJ, Greenfield ML, Hensinger RN, Biermann JS. Use of the Internet by pediatric orthopaedic outpatients. J Pediatr Orthop. 2002;22:261-4.
  • 10. Rullander AC, Jonsson H, Lundström M, Lindh V. Young people’s experiences with scoliosis surgery: a survey of pain, nausea, and global satisfaction. Orthop Nurs. 2013;32:327-35.
  • 11. Rullander AC, Isberg S, Karling M, Jonsson H, Lindh V. Adolescents’ experience with scoliosis surgery: a qualitative study. Pain Manag Nurs. 2013;14:50-9.
  • 12. Koch KD, Buchanan R, Birch JG, Morton AA, Gatchel RJ, Browne RH. Adolescents undergoing surgery for idiopathic scoliosis: how physical and psychological characteristics relate to patient satisfaction with the cosmetic result. Spine (Phila Pa 1976). 2001;26:2119-24.
  • 13. Bull J, Grogan S. Children having spinal surgery to correct scoliosis: a qualitative study of parents’ experiences. J Health Psychol. 2010;15:299-309.
  • 14. Macculloch R, Donaldson S, Nicholas D, et al. Towards an understanding of the information and support needs of surgical adolescent idiopathic scoliosis patients: a qualitative analysis. Scoliosis. 2009;4:12.
  • 15. Khetani N, Donaldson S, Wright JG. What do patients and parents know about surgery for adolescent idiopathic scoliosis?: a knowledge questionnaire. Spine (Phila Pa 1976). 2008;33:E754-8. doi:10.1097/ BRS.0b013e31818579c3
  • 16. Wellburn S, van Schaik P, Bettany-Saltikov J. The Information Needs of Adolescent Idiopathic Scoliosis Patients and Their Parents in the UK: An Online Survey. Healthcare (Basel). 2019;7:78.
  • 17. Wellburn, S. An Investigation of the Information Needs of Adolescent Idiopathic Scoliosis Patients and their Families. Ph.D. Thesis, Teesside University, Middlesbrough, UK, 2017.
  • 18. Reichel D, Schanz J. Developmental psychological aspects of scoliosis treatment. Pediatr Rehabil. 2003;6:221-5.
  • 19. van Schaik P, Flynn D, van Wersch A, Ryan KA, Ferguson V. Factors important in the design of information material for scoliosis. Int J Rehabil Res. 2007;30:163-5.
  • 20. Salisbury MH, LaMontagne LL, Hepworth JT, Cohen F. Parents’ selfidentified stressors and coping strategies during adolescents’ spinal surgery experiences. Clin Nurs Res. 2007;16:212-30.
  • 21. Brosnan H. Nursing management of the adolescent with idiopathic scoliosis. Nurs Clin North Am. 1991;26:17-31.
  • 22. Bavarian ZMB. Parents’ fear and distress during child inpatient care. Acta Medica Iranica. 2005;355-8.
  • 23. Ullrich PF Jr, Vaccaro AR. Patient education on the internet: opportunities and pitfalls. Spine (Phila Pa 1976). 2002;27:E185-8.
  • 24. Rahimi S, Kiaghadi A, Fallahian N. Effective factors on brace compliance in idiopathic scoliosis: a literature review. Disabil Rehabil Assist Technol. 2020;15:917-23.
  • 25. Wellburn S, Bettany-Saltikov J, van Schaik P. An evaluation of web sites recommended by UK NHS consultants to patients with adolescent idiopathic scoliosis at the first point of diagnosis. Spine (Phila Pa 1976). 2013;38:1590-4.
  • 26. Nason GJ, Baker JF, Byrne DP, Noel J, Moore D, Kiely PJ. Scoliosisspecific information on the internet: has the “information highway” led to better information provision?. Spine (Phila Pa 1976). 2012;37:E1364-9.
  • 27. Mathur S, Shanti N, Brkaric M, Sood V, Kubeck J, Paulino C, et al. Surfing for scoliosis: the quality of information available on the Internet. Spine (Phila Pa 1976). 2005;30:2695-700. 28. Gutierrez N, Kindratt TB, Pagels P, Foster B, Gimpel NE. Health literacy, health information seeking behaviors and internet use among patients attending a private and public clinic in the same geographic area. J Community Health. 2014;39:83-9.
  • 29. Hinrichsen GA, Revenson TA, Shinn M. Does self-help help? An empirical investigation of scoliosis peer support groups. Journal of Social Issues. 1985;41:65-87.
APA ÇOLAK T, AKÇAY B, APTİ A, Çolak İ, BETTANY-SALTİKOV J (2021). WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. , 93 - 99. 10.4274/jtss.galenos.2021.65365
Chicago ÇOLAK Tuğba Kuru,AKÇAY Burçin,APTİ Adnan,Çolak İlker,BETTANY-SALTİKOV Josette WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. (2021): 93 - 99. 10.4274/jtss.galenos.2021.65365
MLA ÇOLAK Tuğba Kuru,AKÇAY Burçin,APTİ Adnan,Çolak İlker,BETTANY-SALTİKOV Josette WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. , 2021, ss.93 - 99. 10.4274/jtss.galenos.2021.65365
AMA ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. . 2021; 93 - 99. 10.4274/jtss.galenos.2021.65365
Vancouver ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. . 2021; 93 - 99. 10.4274/jtss.galenos.2021.65365
IEEE ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J "WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?." , ss.93 - 99, 2021. 10.4274/jtss.galenos.2021.65365
ISNAD ÇOLAK, Tuğba Kuru vd. "WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?". (2021), 93-99. https://doi.org/10.4274/jtss.galenos.2021.65365
APA ÇOLAK T, AKÇAY B, APTİ A, Çolak İ, BETTANY-SALTİKOV J (2021). WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. Journal of Turkish Spinal Surgery, 32(3), 93 - 99. 10.4274/jtss.galenos.2021.65365
Chicago ÇOLAK Tuğba Kuru,AKÇAY Burçin,APTİ Adnan,Çolak İlker,BETTANY-SALTİKOV Josette WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. Journal of Turkish Spinal Surgery 32, no.3 (2021): 93 - 99. 10.4274/jtss.galenos.2021.65365
MLA ÇOLAK Tuğba Kuru,AKÇAY Burçin,APTİ Adnan,Çolak İlker,BETTANY-SALTİKOV Josette WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. Journal of Turkish Spinal Surgery, vol.32, no.3, 2021, ss.93 - 99. 10.4274/jtss.galenos.2021.65365
AMA ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. Journal of Turkish Spinal Surgery. 2021; 32(3): 93 - 99. 10.4274/jtss.galenos.2021.65365
Vancouver ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?. Journal of Turkish Spinal Surgery. 2021; 32(3): 93 - 99. 10.4274/jtss.galenos.2021.65365
IEEE ÇOLAK T,AKÇAY B,APTİ A,Çolak İ,BETTANY-SALTİKOV J "WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?." Journal of Turkish Spinal Surgery, 32, ss.93 - 99, 2021. 10.4274/jtss.galenos.2021.65365
ISNAD ÇOLAK, Tuğba Kuru vd. "WHAT INFORMATION DO TEENAGERS WITH IDIOPATHIC SCOLIOSIS AND THEIR FAMILIES NEED WHEN FIRST DIAGNOSED?". Journal of Turkish Spinal Surgery 32/3 (2021), 93-99. https://doi.org/10.4274/jtss.galenos.2021.65365