References
  1. Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes . 2008;6:91.
  2. Ferro MA, Speechley KN. Depressive symptoms among mothers of children with epilepsy: a review of prevalence, associated factors, and impact on children. Epilepsia . 2009;50(11):2344-2354.
  3. Paff T, van der Schee MP, Daniels JM, Pals G, Postmus PE, Sterk PJ, Haarman EG. Exhaled molecular profiles in the assessment of cystic fibrosis and primary ciliary dyskinesia. J Cyst Fibros. 2013;12(5):454-460.
  4. Emiralioglu N, Taskıran EZ, Kosukcu C, Bilgic E, Atilla P, Kaya B, Gunaydın O, Yuzbasıoglu A, Tugcu GD, Ademhan D, et al. Genotype and phenotype evaluation of patients with primary ciliary dyskinesia: First results from Turkey. Pediatr Pulmonol . 2020;55(2):383-393.
  5. Maglione M, Montella S, Mollica C, Carnovale V, Iacotucci P, De Gregorio F, Tosco A, Cervasio M, Raia V, Santamaria F. Lung structure and function similarities between primary ciliary dyskinesia and mild cystic fibrosis: a pilot study. Ital J Pediatr. 2017;43(1):34.
  6. Cohen-Cymberknoh M, Simanovsky N, Hiller N, Hillel AG, Shoseyov D, Kerem E. Differences in disease expression between primary ciliary dyskinesia and cystic fibrosis with and without pancreatic insufficiency. Chest . 2014;145(4):738-744.
  7. Robinson P, Morgan L. Bronchiectasis in PCD looks different to CF on CT scan. Multidiscip Respir Med. 2018;13:24.
  8. McManus IC, Mitchison HM, Chung EM, Stubbings GF, Martin N. Primary ciliary dyskinesia (Siewert’s/Kartagener’s syndrome): respiratory symptoms and psycho-social impact. BMC Pulm Med . 2003;3:4.
  9. Cepuch G, Dębska G, Pawlik L, Mazurek H. Patient’s perception of the meaning of life in cystic fibrosis–its evaluation with respect to the stage of the disease and treatment. Postepy Hig Med Dosw (Online) . 2012;66:714-721.
  10. Driscoll KA, Montag-Leifling K, Acton JD, Modi AC. Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis. Pediatr Pulmonol . 2009;44(8):784-792.
  11. Filigno SS, Miller J, Moore S, Peugh J, Weiland J, Backstrom J, Borschuk A. Assessing psychosocial risk in pediatric cystic fibrosis. Pediatr Pulmonol . 2019;54(9):1391-1397.
  12. Schechter MS, Shelton BJ, Margolis PA, Fitzsimmons SC. The association of socioeconomic status with outcomes in cystic fibrosis patients in the United States. Am J Respir Crit Care Med . 2001;163(6):1331-1337.
  13. Dani A. Colonization and infection. Cent European J Urol . 2014;67(1):86-87.
  14. Graham BL, Steenbruggen I, Miller MR, Barjaktarevic IZ, Cooper BG, Hall GL, Hallstrand TS, Kaminsky DA, McCarthy K, McCormack MC, et al. Standardization of Spirometry 2019 Update. An Official American Thoracic Society and European Respiratory Society Technical Statement. Am J Respir Crit Care Med . 2019;200(8):e70-e88.
  15. Turkish Statistical Institute Income and Living Conditions Survey, 2016; Available from:http://www.turkstat.gov.tr/PreHaberBultenleri.do?id=27823. [updated 2017 September 18; cited 2017 October 28]. Accessed June 16, 2021.
  16. Hisli N. Beck Depresyon Envanterinin geçerliliği üzerine bir çalışma [A study on the validity of the Beck Depression Inventory].Psikoloji Dergisi 1988;6:118–222.
  17. Çam O. Tükenmişlik Envanterinin geçerlik ve güvenirliğinin araştırılması [Investigation of the validity and reliability of the Burnout Inventory]. VII. Ulusal Psikoloji Kongresi Bilimsel Çalışmaları – Hacettepe Üniversitesi VII. Ulusal Psikoloji Kongresi Düzenleme Kurulu ve Türk Psikologlar Derneği Yayınları [VII. National Psychology Congress Scientific Studies - Hacettepe University VII. National Psychology Congress Organizing Committee and Turkish Psychological Association Publications 1992;155–160.
  18. Ozlu A, Yildiz M, Aker T. A reliability and validity study on the Zarit Caregiver Burden Scale. Arch Neuropsychiatr 2009;46(Suppl 1):38–42.
  19. LeCompte G, LeCompte A, Özer S. Three socioeconomic level childrearing attitudes of mothers in Ankara: A scale adaptation. Türk Psikoloji Dergisi. 1978;1:5–8
  20. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry 1961;4:561–571.
  21. Jackson SE, Schwab RL, Schuler RS. Toward an understanding of the burnout phenomenon. J Appl Psychol . 1986;71(4):630-640.
  22. Lim WY, Ong J, Ong S, Hao Y, Abdullah HR, Koh DL, Mok USM. The Abbreviated Maslach Burnout Inventory Can Overestimate Burnout: A Study of Anesthesiology Residents. J Clin Med . 2019;9(1):61.
  23. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist . 1980;20(6):649-655.
  24. Schaefer ES, Bell RQ. Development of a parental attitude research instrument. Child Dev . 1958;29(3):339-361.
  25. Shwachman H, Kulczycki LL. Long-term study of one hundred five patients with cystic fibrosis; studies made over a five- to fourteen-year period. AMA J Dis Child . 1958;96(1):6-15.
  26. Khalilzadeh S, Hassanzad M, Baghaie N, Parsanejad N, Boloursaz MR, Fahimi F. Shwachman score in clinical evaluation of cystic fibrosis.J. Compr. Pediatr. 2013; 4: 82–5.
  27. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tibosch MM, Bergsten Brucefors A, Yüksel H, Catastini P, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax . 2014;69(12):1090-1097.
  28. Fitzgerald C, George S, Somerville R, Linnane B, Fitzpatrick P. Caregiver burden of parents of young children with cystic fibrosis. J Cyst Fibros . 2018;17(1):125-131.
  29. Carotenuto M, Esposito M, Di Pasquale F, De Stefano S, Santamaria F. Psychological, cognitive and maternal stress assessment in children with primary ciliary dyskinesia. World J Pediatr . 2013;9(4):312-317.
  30. Lindström C, Åman J, Anderzén-Carlsson A, Lindahl Norberg A. Group intervention for burnout in parents of chronically ill children - a small-scale study. Scand J Caring Sci . 2016;30(4):678-686.
  31. Davis SD, Rosenfeld M, Lee HS, Ferkol TW, Sagel SD, Dell SD, Milla C, Pittman JE, Shapiro AJ, Sullivan KM, et al. Primary Ciliary Dyskinesia: Longitudinal Study of Lung Disease by Ultrastructure Defect and Genotype. Am J Respir Crit Care Med . 2019;199(2):190-198.
  32. Kenis Coskun O, Gencer Atalay K, Erdem E, Karadag-Saygi E, Gokdemir Y, Karadag B. Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia. Pediatr Pulmonol . 2019;54(12):1936-1940.
  33. Quittner AL, Opipari LC, Espelage DL, Carter B, Eid N, Eigen H. Role strain in couples with and without a child with a chronic illness: associations with marital satisfaction, intimacy, and daily mood. Health Psychol . 1998;17(2):112-124.
  34. Unal Yuksekgonul A, Aslan AT, Sismanlar Eyuboglu T, Soysal S, Budakoglu II. Evaluation of the psychological status of mothers of children with cystic fibrosis and the relationship between children’s clinical status. J Paediatr Child Health . 2020;56(10):1537-1543.
  35. Patterson JM, Budd J, Goetz D, Warwick WJ. Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics . 1993;91(2):383-389.
  36. Havermans T, Houben J, Vermeulen F, Boon M, Proesmans M, Lorent N, de Soir E, Vos R, Dupont L. The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients. J Cyst Fibros . 2020;19(6):880-887.
  37. Riccio MP, Borrelli M, Fioretti MT, Del Bene M, Bravaccio C, Poeta M, Santamaria F. Is Quarantine for COVID-19 Pandemic Associated with Psychological Burden in Primary Ciliary Dyskinesia?. Int J Environ Res Public Health . 2020;17(21):8099.