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Year 2019, Volume: 7 Issue: Ek - IRUPEC 2019 Kongresi Tam Metin Bildirileri, 57 - 61, 10.12.2019

Abstract

References

  • References 1- Hay W, Levin W.MJ, Sondheımer MJ, Deterding R.R, 2013. “Current Diagnosis and teratment” serisi, 20. Baskı. Çeviri Editörü; Sarıalioğlu ve ark Güneş Tıp Kitapevi, 500-503, 2013 2- Yara YF, Altun E, Alparslan Ö, 2013. Respiratory system diseases and nursing care in children, Edit. Conk Z., Başbakkal Z., Yılmaz Bal H., Bolışık B., Pediatric Nursing, First Edition, Ankara, Academician Bookstore, Ankara. 3- Ministry of Health - Infant and child monitoring protocols 2017. Date of access 10 March 2018. https://dosyaism.saglik.gov.tr/Eklenti/9010, baby-child-monitoring-protocols pdf 4- Fajac I., Wainwright C.E.. New treatments targeting the basic defects in cystic fibrosis. Presse Med. 2017; 46: e165–e175 5- Reisinho, M. D. C. M. S., Oliveira, R., & Gomes, B. P. (2016). Nursing interventions in monitoring the adolescent with Cystic Fibrosis: a literature review. Revista latino-americana de enfermagem, 24. 6- Koeller, M., & Meyer, C. (2016). Maintaining nursing care quality—clinical care guidelines for cystic fibrosis: outpatient and ınpatient. Case Reports in Clinical Medicine, 5(10), 358. 7- Çavuşoğolu H, 2013. Child Health Nursing, 11th Edition, Ankara, Sistem Ofset, 405-409 8- Castellani, C., Duff, A. J., Bell, S. C., Heijerman, H. G., Munck, A., Ratjen, F., ... & Hodková, P. (2018). ECFS best practice guidelines: the 2018 revision. Journal of cystic fibrosis, 17(2), 153-178. 9- Murray TS., O'Rourke TK. Feinn R, Drapeau G, Collins MS. Nebulizer cleaning and disinfection practices in families with cystic fibrosis: The relationship between attitudes, practice and microbe colonization. Journal of Cystic Fibrosis, Available online 22 May 2019 https://doi.org/10.1016/j.jcf.2019.05.008 10- Törüner EK, Büyükgönenç L, 2012. Basic Nursing Approaches to Child Health, 1st Edition, Göktuğ Publishing, 627-631 11- Nierengarten, Mary Beth. 2017, Cystic fibrosis guidelines for preschool children. Contemporary Pediatrics 34.3 26. 12- Moola, F. J., Henry, L. A., Huynh, E., Stacey, J. A., Faulkner, G. E. 2017. They know it's safe–they know what to expect from that face: perceptions towards a cognitive‐behavioural counselling programme among caregivers of children with cystic fibrosis. Journal of Clinical Nursing, 26(19-20), 2932-2943. 13- Smyth, W., Abernethy, G., Jessup, M., Douglas, T., Shields, L., AREST‐CF. 2017. Family‐centred care in cystic fibrosis: a pilot study in North Queensland, Australia. Nursing Open, 4(3), 168-173. 14- Tointon, K., & Hunt, J. (2016). How holistic nursing can enhance the quality of life of children with cystic fibrosis. Nursing children and young people, 28(8), 22-25. 15- Gathercole, K. (2019). Managing cystic fibrosis alongside children’s schooling: Family, nurse and teacher perspectives. Journal of Child Health Care, 23(3), 425-436. 16- Disabato, J. A., Mannino, J. E., & Betz, C. L. (2019). Pediatric nurses' role in health care transition planning: National survey findings and practice implications. Journal of pediatric nursing, 49, 60-66. 17- Malone H, Biggar S, Javadpour S, Edworthy Z, Sheaf G, Coyne I. Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis. Cochrane Database of Systematic Reviews 2019, Issue 5. Art. No.: CD012578. DOI: 10.1002/14651858.CD012578.pub2 18- Coyne, I., Malone, H., Chubb, E., & While, A. E. (2018). Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs. Journal of Child Health Care, 22(4), 646-657. 19- Schwarzenberg S.J. Hempstead SE., McDonald CM., Powers SW. Wooldridge J, Blair S. et al Enteral tube feeding for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines. Journal of Cystic Fibrosis 15 (2016) 724–735. 20- Hızal G. Enteral Nutrition Support in Patients with Cystic Fibrosis. IX. Cystic Fibrosis Symposium and Family Education Meeting 2019,Ankara 21- Price, D. M., & Knotts, S. E. (2017). Communication, Comfort, and Closure for the Patient With Cystic Fibrosis at the End of Life: The Role of the Bedside Nurse. Journal of Hospice & Palliative Nursing, 19(4), 298-302. 22- Dellon, E. P., Helms, S. W., Hailey, C. E., Shay, R., Carney, S. D., Schmidt, H. J., ... & Prieur, M. G. (2018). Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care. Pediatric pulmonology, 53(9), 1218-1224.

Kistik Fibrozisli Çocuğun Bakımda Hemşiresinin Rolü

Year 2019, Volume: 7 Issue: Ek - IRUPEC 2019 Kongresi Tam Metin Bildirileri, 57 - 61, 10.12.2019

Abstract

Kistik fibrozis (KF), otozomal resesif geçişli, ekzokrin salgı bezlerinde fonksiyon bozukluğu ile karakterize, birçok sistemi tutan kronik bir hastalıktır. KF'de beklenen yaşam süresinin uzatılması ve hastalığın iyi prognoz göstermesinde multidisipliner bakım yaklaşımlarının tercih edilmesi önemli bir faktördür. KF’te hemşirelik bakımının amacı; çocuğun solunum fonksiyonlarının artırılması ve korunması, optimal düzeyde beslenmenin sağlanması, çocuğun yaşına uygun büyüme gelişmesinin sağlanması ve ebeveynlerin psikososyal açıdan desteklenmesidir. KF’nin yaşamı tehdit eden bir hastalık olması, sık hastaneye yatışlar, morbite riskinin yüksekliği, yaşanılan ekonomik ve sosyal sorunlar açısından çocuk hemşireleri ailenin yaşadığı sorunların farkında olmalı ve danışmanlık hizmeti vererek aileleri desteklemelidirler. Hemşirelik girişimleri ile desteklenen KFli çocukların mortalite ve morbidite oranları üzerine olumlu etkilerinin olduğunu göstermektedir. KF'li çocuk ve ebeveynlerine yönelik uygulanan planlı hastalık yönetimi eğitim girişimi ve aile güçlendirme programları, ebeveynlerin hastalık yönetimi becerisini artırmaktadır. Ebeveynlerin hastalık yönetimine ilişkin bilgi düzeylerinin artırılması, sorularının yanıtlanması ve ebeveynlerin kararlara katılımının sağlanması KF’li çocukların yaşam kalitelerini ve sürelerini artırıcı etkisi vardır. Hasta ve ebeveynin var olan potansiyellerinin geliştirilmesi ve yasal haklarının korunması çocuk hemşirelerinin savunucu rolllerinden bir tanesidir. Hemşirelerin KF’de bakıma ilişkin deneyimlerini ebeveynler ile paylaşmaları bakım kalitesinin geliştirilmesinde ve ebeveynin yaşadığı psikososyal sorunların azaltılmasında etkili bir girişimdir. KF’li adölesanlar ve ebeveynlerin bakım ihtiyaçlarının belirlenmesi ve hastalığın günlük yaşama adaptasyonunun sağlanmasında hemşirelik eğitimi önemli bir role sahiptir.

References

  • References 1- Hay W, Levin W.MJ, Sondheımer MJ, Deterding R.R, 2013. “Current Diagnosis and teratment” serisi, 20. Baskı. Çeviri Editörü; Sarıalioğlu ve ark Güneş Tıp Kitapevi, 500-503, 2013 2- Yara YF, Altun E, Alparslan Ö, 2013. Respiratory system diseases and nursing care in children, Edit. Conk Z., Başbakkal Z., Yılmaz Bal H., Bolışık B., Pediatric Nursing, First Edition, Ankara, Academician Bookstore, Ankara. 3- Ministry of Health - Infant and child monitoring protocols 2017. Date of access 10 March 2018. https://dosyaism.saglik.gov.tr/Eklenti/9010, baby-child-monitoring-protocols pdf 4- Fajac I., Wainwright C.E.. New treatments targeting the basic defects in cystic fibrosis. Presse Med. 2017; 46: e165–e175 5- Reisinho, M. D. C. M. S., Oliveira, R., & Gomes, B. P. (2016). Nursing interventions in monitoring the adolescent with Cystic Fibrosis: a literature review. Revista latino-americana de enfermagem, 24. 6- Koeller, M., & Meyer, C. (2016). Maintaining nursing care quality—clinical care guidelines for cystic fibrosis: outpatient and ınpatient. Case Reports in Clinical Medicine, 5(10), 358. 7- Çavuşoğolu H, 2013. Child Health Nursing, 11th Edition, Ankara, Sistem Ofset, 405-409 8- Castellani, C., Duff, A. J., Bell, S. C., Heijerman, H. G., Munck, A., Ratjen, F., ... & Hodková, P. (2018). ECFS best practice guidelines: the 2018 revision. Journal of cystic fibrosis, 17(2), 153-178. 9- Murray TS., O'Rourke TK. Feinn R, Drapeau G, Collins MS. Nebulizer cleaning and disinfection practices in families with cystic fibrosis: The relationship between attitudes, practice and microbe colonization. Journal of Cystic Fibrosis, Available online 22 May 2019 https://doi.org/10.1016/j.jcf.2019.05.008 10- Törüner EK, Büyükgönenç L, 2012. Basic Nursing Approaches to Child Health, 1st Edition, Göktuğ Publishing, 627-631 11- Nierengarten, Mary Beth. 2017, Cystic fibrosis guidelines for preschool children. Contemporary Pediatrics 34.3 26. 12- Moola, F. J., Henry, L. A., Huynh, E., Stacey, J. A., Faulkner, G. E. 2017. They know it's safe–they know what to expect from that face: perceptions towards a cognitive‐behavioural counselling programme among caregivers of children with cystic fibrosis. Journal of Clinical Nursing, 26(19-20), 2932-2943. 13- Smyth, W., Abernethy, G., Jessup, M., Douglas, T., Shields, L., AREST‐CF. 2017. Family‐centred care in cystic fibrosis: a pilot study in North Queensland, Australia. Nursing Open, 4(3), 168-173. 14- Tointon, K., & Hunt, J. (2016). How holistic nursing can enhance the quality of life of children with cystic fibrosis. Nursing children and young people, 28(8), 22-25. 15- Gathercole, K. (2019). Managing cystic fibrosis alongside children’s schooling: Family, nurse and teacher perspectives. Journal of Child Health Care, 23(3), 425-436. 16- Disabato, J. A., Mannino, J. E., & Betz, C. L. (2019). Pediatric nurses' role in health care transition planning: National survey findings and practice implications. Journal of pediatric nursing, 49, 60-66. 17- Malone H, Biggar S, Javadpour S, Edworthy Z, Sheaf G, Coyne I. Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis. Cochrane Database of Systematic Reviews 2019, Issue 5. Art. No.: CD012578. DOI: 10.1002/14651858.CD012578.pub2 18- Coyne, I., Malone, H., Chubb, E., & While, A. E. (2018). Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs. Journal of Child Health Care, 22(4), 646-657. 19- Schwarzenberg S.J. Hempstead SE., McDonald CM., Powers SW. Wooldridge J, Blair S. et al Enteral tube feeding for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines. Journal of Cystic Fibrosis 15 (2016) 724–735. 20- Hızal G. Enteral Nutrition Support in Patients with Cystic Fibrosis. IX. Cystic Fibrosis Symposium and Family Education Meeting 2019,Ankara 21- Price, D. M., & Knotts, S. E. (2017). Communication, Comfort, and Closure for the Patient With Cystic Fibrosis at the End of Life: The Role of the Bedside Nurse. Journal of Hospice & Palliative Nursing, 19(4), 298-302. 22- Dellon, E. P., Helms, S. W., Hailey, C. E., Shay, R., Carney, S. D., Schmidt, H. J., ... & Prieur, M. G. (2018). Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care. Pediatric pulmonology, 53(9), 1218-1224.
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Details

Primary Language English
Subjects Health Care Administration
Journal Section Congress Proceedings
Authors

Hatice Dönmez

Fatma Taş Arslan

Publication Date December 10, 2019
Acceptance Date January 16, 2020
Published in Issue Year 2019 Volume: 7 Issue: Ek - IRUPEC 2019 Kongresi Tam Metin Bildirileri

Cite

Vancouver Dönmez H, Taş Arslan F. Kistik Fibrozisli Çocuğun Bakımda Hemşiresinin Rolü. pediatr pract res. 2019;7(Ek):57-61.