Research Article
BibTex RIS Cite
Year 2024, Volume: 2 Issue: 1, 1 - 9, 24.06.2024

Abstract

References

  • 1. Castellani C, Assael BM. Cystic fibrosis: a clinical view. Cell Mol Life Sci. 2017;74(1):129-40.
  • 2. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, 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):1090-7.
  • 3. Daly C, Ruane P, O’Reilly K, Longworth L, Vega-Hernandez G. Caregiver burden in cystic fibrosis: a systematic literature review. Ther Adv Respir Dis. 2022; 16: 17534666221086416.
  • 4. Flewelling KD, Sellers DE, Sawicki GS, Robinson WM, Dill EJ. Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis. J Cyst Fibros. 2019;18(4):572-576. doi: 10.1016/j.jcf.2019.01.013.
  • 5. Cascella M, Rajnik M, Aleem A, Dulebohn SC, Di Napoli R. Features, evaluation, and treatment of coronavirus (COVID-19). Statpearls [internet]. 2022.
  • 6. Çiftçi E, Çoksüer F. Yeni koronavirüs infeksiyonu: COVID-19. Flora İnfeksiyon Hastalıkları ve Klinik Mikrobiyoloji Dergisi. 2020;25(1):9-18.
  • 7. Remuzzi A, Remuzzi G. COVID-19 and Italy: what next? The lancet. 2020;395(10231):1225-8.
  • 8. Viviani L, Assael BM, Kerem E, The E, group HNs. Impact of the A (H1N1) pandemic influenza (season 2009–2010) on patients with cystic fibrosis. J Cyst Fibros. 2011;10(5):370-6.
  • 9. Bezzerri V, Lucca F, Volpi S, Cipolli M. Does cystic fibrosis constitute an advantage in COVID-19 infection? Riv Ital Pediatr. 2020;46:1-3.
  • 10. Mondejar-Lopez P, Quintana-Gallego E, Giron-Moreno RM, Cortell-Aznar I, de Valbuena-Maiz MR, Diab-Caceres L, et al. Impact of SARS-CoV-2 infection in patients with cystic fibrosis in Spain: Incidence and results of the national CF-COVID19-Spain survey. Respir Med. 2020;170:106062.
  • 11. Kabasakal E, Ciddi PK. The Fear of COVID-19: Effects on Psychosocial Factors and Quality of Life in Patients with Cystic Fibrosis. Hacettepe University Faculty of Health Sciences Journal.11(1):21-37.
  • 12. Pınar Senkalfa B, Sismanlar Eyuboglu T, Aslan AT, Ramaslı Gursoy T, Soysal AS, Yapar D, et al. Effect of the COVID‐19 pandemic on anxiety among children with cystic fibrosis and their mothers. Pediat Pulmonol. 2020;55(8):2128-34.
  • 13. Girdwood TC, Goralski JL, Ferris ME, Lynn MR, Dellon EP, Kainz K, et al. Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study. Health Care Transitions. 2023;1:100011.
  • 14. Bucak IH, Tumgor G, Almis H, Kose S, Dogan CN, Turgut M. Evaluation of burden and anxiety in caregivers of patients with pediatric celiac disease in the COVID-19 pandemic. Avicenna J.Med. 2021;11(03):152-5.
  • 15. Kezer Ö. Covid-19 Pandemi Sürecinde Yaşlıya Bakım Veren Bireylerde Bakım Yükü ile Yaşam Doyumu Ilişkisi: Necmettin Erbakan University (Turkey); 2022.
  • 16. Yazla E, Asafov A, Funda O. COVİD-19 Pandemisi Koşulları Dikkat Eksikliği Hiperaktivite Bozukluğu ve Otizm Spektrum Bozukluğu Tanısı Olan Çocukların Annelerini Etkiledi mi? Hitit Med. J. 2022;4(3):104-10.
  • 17. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress, J. Health soc. behavior. 1983;(24):385-396.
  • 18. Eskin M, Harlak H, Demirkıran F, Dereboy Ç, Editors. Algılanan stres ölçeğinin Türkçeye uyarlanması: güvenirlik ve geçerlik analizi. New/Yeni Symposium Journal; 2013;51(3)132-140.
  • 19. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J. Personality Assessment. 1988;52(1):30-41.
  • 20. Eker D. Cok boyutlu algilanan sosyal destek olceginin gozden gecirilmis formunun faktor yapisi, gecerlik ve guvenirligi. Turk Psikiyatri Derg. 2001;12:17-25.
  • 21. Fadime İ, Erdem M. Bakim verme yükü ölçeği’nin türkçe'ye uyarlanmasi geçerlilik ve güvenilirliği. J Nursology. 2006;11(4):85-95.
  • 22. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. The gerontologist. 1980;20(6):649-55.
  • 23. Hébert R, Bravo G, Préville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Can. J.Aging. 2000;19(4):494-507.
  • 24. Haktanir A, Seki T, Dilmaç B. Adaptation and evaluation of Turkish version of the fear of COVID-19 scale. Death studies. 2022;46(3):719-27.
  • 25. Ahorsu DK, Lin C-Y, Imani V, Saffari M, Griffiths MD, Pakpour AH. The fear of COVID-19 scale: development and initial validation. Int J Ment Health Addict.2020:1-9.
  • 26. Nikopoulou V, Holeva V, Parlapani E, Karamouzi P, Voitsidis P, Porfyri G, et al. Mental health screening for COVID-19: A proposed cutoff score for the Greek version of the Fear of COVID-19 Scale (FCV-19S). Int J Ment Health Addict. 2020:1-14.
  • 27. Atagün Mİ, Balaban ÖD, Atagün Z, Elagöz M, Özpolat AY. Kronik hastalıklarda bakım veren yükü. Psikiyatride Güncel Yaklaşımlar. 2011;3(3):513-52.
  • 28. Angelis A, Kanavos P, López-Bastida J, Linertová R, Nicod E, Serrano-Aguilar P, et al. Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom. BMC health services research. 2015;15:1-8.
  • 29. Chevreul K, Brigham KB, Michel M, Rault G, Network B-RR. Costs and health-related quality of life of patients with cystic fibrosis and their carers in France. J Cyst Fibros. 2015;14(3):384-91.
  • 30. Keniş Coşkun Ö, Gençer Atalay K, Erdem E, Karadag‐Saygi E, Gökdemir Y, Karadağ B. Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia. Pediat Pulmonol. 2019;54(12):1936-40.
  • 31. Yıldız S, Kağan A, Kurt O, Korkmaz S. Evaluation of perceived family burden, care burden and quality of life of caregivers during the pandemic period. Ann Clin Anal Med. 2021:1-6.
  • 32. Muruganandam P, Neelamegam S, Menon V, Alexander J, Chaturvedi SK. COVID-19 and severe mental illness: impact on patients and its relation with their awareness about COVID-19. Psychiatry Res. 2020;291:113265.
  • 33. Wauters A, Vervoort T, Dhondt K, Soenens B, Vansteenkiste M, Morbée S, et al. Mental health outcomes among parents of children with a chronic disease during the COVID-19 pandemic: The role of parental burn-out. J Pediatr Psychol. 2022;47(4):420-31.
  • 34. Oedekoven M, Amin-Kotb K, Gellert P, Balke K, Kuhlmey A, Schnitzer S. Caregivers’ burden and education level: does subjective health mediate the association? Susanne Schnitzer. Eur. J. Public Health. 2017;27(suppl_3):ckx187. 00.
  • 35. Krijger A, Dulfer K, van Oers H, Teela L, de Jong-van Kempen B, van Els A, et al. Perceived stress, family impact, and changes in physical and social daily life activities of children with chronic somatic conditions during the COVID-19 pandemic. BMC public health. 2022;22(1):1106.
  • 36. Ademhan Tural D, Emiralioglu N, Tural Hesapcioglu S, Karahan S, Ozsezen B, Sunman B, et al. Psychiatric and general health effects of COVID‐19 pandemic on children with chronic lung disease and parents' coping styles. Pediatr Pulmonol. 2020;55(12):3579-86.
  • 37. Mohammadi Ferizi M, Aali S, Bigdeli I, Rezaei Talab F, Moradi Tavalaei A. COVID-19 Pandemic and the Mental Health of Caregivers of the Elderly with Chronic Diseases. Iran Rehabil J. 2022;20(2):225-36.

INVESTIGATION STRESS LEVEL, PERCEPTION OF SOCIAL SUPPORT, CAREGIVING BURDEN AND CORONAVIRUS PHOBIA OF CAREGIVERS OF CHILDREN WITH CYSTIC FIBROSIS DURING THE CORONAVIRUS PANDEMIC

Year 2024, Volume: 2 Issue: 1, 1 - 9, 24.06.2024

Abstract

Purpose: Although the perception of care burden and social support is important for caregivers in chronic disease management, the perception of care burden and social support of families with children with cystic fibrosis (CF) in the pandemic has not been examined. The aim of this study was to examine the level of perceived stress, perceived social support, care burden of caregivers of patients with CF.
Methods: Eleven mothers with children with CF and twelve mothers with healthy children were included in this cross-sectional study. The perceived stress level was evaluated with the "Perceived Stress Scale (PSS-10). The level of perceived support was evaluated using the Multidimensional Perceived Support Scale (MDPSS) and caregiver burden of mothers was assessed with the Burden Interview (BI).
Results: The median BI of the mothers of individuals with CF was 26.00 (11.00-37.00) and median total scores of MDASDS score 48.00 (57.00-81.00). The perceived stress level was significantly higher in the mothers of healthy children group than in the mothers having children with CF group (p = 0.016). PSS of mothers who have a child with CF related to the caregiving burden (r = 0.710; p = 0.014), friends subgroup scores of MDASDS (friends) (r = -0.697; p = 0.017), and total scores of MDASDS (total) (r = -0.839; p = 0.001). In addition, the caregiving burden of mothers in this group was correlated MDASDS (family) (=-0.627; p=0.039).
Discussion: Perceived stress and caregiver burden among caregivers of patients with cystic fibrosis increased during the COVID-19 pandemic. Perceived social support is negatively associated with perceived stress and care burden. Evaluating the perception of social support in families of individuals with CF may help to reduce the stress and care burden perceived by caregivers in the face of sudden, unexpected events.

Ethical Statement

-

Supporting Institution

-

Thanks

-

References

  • 1. Castellani C, Assael BM. Cystic fibrosis: a clinical view. Cell Mol Life Sci. 2017;74(1):129-40.
  • 2. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, 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):1090-7.
  • 3. Daly C, Ruane P, O’Reilly K, Longworth L, Vega-Hernandez G. Caregiver burden in cystic fibrosis: a systematic literature review. Ther Adv Respir Dis. 2022; 16: 17534666221086416.
  • 4. Flewelling KD, Sellers DE, Sawicki GS, Robinson WM, Dill EJ. Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis. J Cyst Fibros. 2019;18(4):572-576. doi: 10.1016/j.jcf.2019.01.013.
  • 5. Cascella M, Rajnik M, Aleem A, Dulebohn SC, Di Napoli R. Features, evaluation, and treatment of coronavirus (COVID-19). Statpearls [internet]. 2022.
  • 6. Çiftçi E, Çoksüer F. Yeni koronavirüs infeksiyonu: COVID-19. Flora İnfeksiyon Hastalıkları ve Klinik Mikrobiyoloji Dergisi. 2020;25(1):9-18.
  • 7. Remuzzi A, Remuzzi G. COVID-19 and Italy: what next? The lancet. 2020;395(10231):1225-8.
  • 8. Viviani L, Assael BM, Kerem E, The E, group HNs. Impact of the A (H1N1) pandemic influenza (season 2009–2010) on patients with cystic fibrosis. J Cyst Fibros. 2011;10(5):370-6.
  • 9. Bezzerri V, Lucca F, Volpi S, Cipolli M. Does cystic fibrosis constitute an advantage in COVID-19 infection? Riv Ital Pediatr. 2020;46:1-3.
  • 10. Mondejar-Lopez P, Quintana-Gallego E, Giron-Moreno RM, Cortell-Aznar I, de Valbuena-Maiz MR, Diab-Caceres L, et al. Impact of SARS-CoV-2 infection in patients with cystic fibrosis in Spain: Incidence and results of the national CF-COVID19-Spain survey. Respir Med. 2020;170:106062.
  • 11. Kabasakal E, Ciddi PK. The Fear of COVID-19: Effects on Psychosocial Factors and Quality of Life in Patients with Cystic Fibrosis. Hacettepe University Faculty of Health Sciences Journal.11(1):21-37.
  • 12. Pınar Senkalfa B, Sismanlar Eyuboglu T, Aslan AT, Ramaslı Gursoy T, Soysal AS, Yapar D, et al. Effect of the COVID‐19 pandemic on anxiety among children with cystic fibrosis and their mothers. Pediat Pulmonol. 2020;55(8):2128-34.
  • 13. Girdwood TC, Goralski JL, Ferris ME, Lynn MR, Dellon EP, Kainz K, et al. Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study. Health Care Transitions. 2023;1:100011.
  • 14. Bucak IH, Tumgor G, Almis H, Kose S, Dogan CN, Turgut M. Evaluation of burden and anxiety in caregivers of patients with pediatric celiac disease in the COVID-19 pandemic. Avicenna J.Med. 2021;11(03):152-5.
  • 15. Kezer Ö. Covid-19 Pandemi Sürecinde Yaşlıya Bakım Veren Bireylerde Bakım Yükü ile Yaşam Doyumu Ilişkisi: Necmettin Erbakan University (Turkey); 2022.
  • 16. Yazla E, Asafov A, Funda O. COVİD-19 Pandemisi Koşulları Dikkat Eksikliği Hiperaktivite Bozukluğu ve Otizm Spektrum Bozukluğu Tanısı Olan Çocukların Annelerini Etkiledi mi? Hitit Med. J. 2022;4(3):104-10.
  • 17. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress, J. Health soc. behavior. 1983;(24):385-396.
  • 18. Eskin M, Harlak H, Demirkıran F, Dereboy Ç, Editors. Algılanan stres ölçeğinin Türkçeye uyarlanması: güvenirlik ve geçerlik analizi. New/Yeni Symposium Journal; 2013;51(3)132-140.
  • 19. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J. Personality Assessment. 1988;52(1):30-41.
  • 20. Eker D. Cok boyutlu algilanan sosyal destek olceginin gozden gecirilmis formunun faktor yapisi, gecerlik ve guvenirligi. Turk Psikiyatri Derg. 2001;12:17-25.
  • 21. Fadime İ, Erdem M. Bakim verme yükü ölçeği’nin türkçe'ye uyarlanmasi geçerlilik ve güvenilirliği. J Nursology. 2006;11(4):85-95.
  • 22. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. The gerontologist. 1980;20(6):649-55.
  • 23. Hébert R, Bravo G, Préville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Can. J.Aging. 2000;19(4):494-507.
  • 24. Haktanir A, Seki T, Dilmaç B. Adaptation and evaluation of Turkish version of the fear of COVID-19 scale. Death studies. 2022;46(3):719-27.
  • 25. Ahorsu DK, Lin C-Y, Imani V, Saffari M, Griffiths MD, Pakpour AH. The fear of COVID-19 scale: development and initial validation. Int J Ment Health Addict.2020:1-9.
  • 26. Nikopoulou V, Holeva V, Parlapani E, Karamouzi P, Voitsidis P, Porfyri G, et al. Mental health screening for COVID-19: A proposed cutoff score for the Greek version of the Fear of COVID-19 Scale (FCV-19S). Int J Ment Health Addict. 2020:1-14.
  • 27. Atagün Mİ, Balaban ÖD, Atagün Z, Elagöz M, Özpolat AY. Kronik hastalıklarda bakım veren yükü. Psikiyatride Güncel Yaklaşımlar. 2011;3(3):513-52.
  • 28. Angelis A, Kanavos P, López-Bastida J, Linertová R, Nicod E, Serrano-Aguilar P, et al. Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom. BMC health services research. 2015;15:1-8.
  • 29. Chevreul K, Brigham KB, Michel M, Rault G, Network B-RR. Costs and health-related quality of life of patients with cystic fibrosis and their carers in France. J Cyst Fibros. 2015;14(3):384-91.
  • 30. Keniş Coşkun Ö, Gençer Atalay K, Erdem E, Karadag‐Saygi E, Gökdemir Y, Karadağ B. Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia. Pediat Pulmonol. 2019;54(12):1936-40.
  • 31. Yıldız S, Kağan A, Kurt O, Korkmaz S. Evaluation of perceived family burden, care burden and quality of life of caregivers during the pandemic period. Ann Clin Anal Med. 2021:1-6.
  • 32. Muruganandam P, Neelamegam S, Menon V, Alexander J, Chaturvedi SK. COVID-19 and severe mental illness: impact on patients and its relation with their awareness about COVID-19. Psychiatry Res. 2020;291:113265.
  • 33. Wauters A, Vervoort T, Dhondt K, Soenens B, Vansteenkiste M, Morbée S, et al. Mental health outcomes among parents of children with a chronic disease during the COVID-19 pandemic: The role of parental burn-out. J Pediatr Psychol. 2022;47(4):420-31.
  • 34. Oedekoven M, Amin-Kotb K, Gellert P, Balke K, Kuhlmey A, Schnitzer S. Caregivers’ burden and education level: does subjective health mediate the association? Susanne Schnitzer. Eur. J. Public Health. 2017;27(suppl_3):ckx187. 00.
  • 35. Krijger A, Dulfer K, van Oers H, Teela L, de Jong-van Kempen B, van Els A, et al. Perceived stress, family impact, and changes in physical and social daily life activities of children with chronic somatic conditions during the COVID-19 pandemic. BMC public health. 2022;22(1):1106.
  • 36. Ademhan Tural D, Emiralioglu N, Tural Hesapcioglu S, Karahan S, Ozsezen B, Sunman B, et al. Psychiatric and general health effects of COVID‐19 pandemic on children with chronic lung disease and parents' coping styles. Pediatr Pulmonol. 2020;55(12):3579-86.
  • 37. Mohammadi Ferizi M, Aali S, Bigdeli I, Rezaei Talab F, Moradi Tavalaei A. COVID-19 Pandemic and the Mental Health of Caregivers of the Elderly with Chronic Diseases. Iran Rehabil J. 2022;20(2):225-36.
There are 37 citations in total.

Details

Primary Language English
Subjects Physiotherapy
Journal Section Research Articles
Authors

Cemile Bozdemir Özel 0000-0001-7375-2519

Raziye Nesrin Demirtas 0000-0002-4576-1570

Abdurrrahman Arslan 0000-0003-3600-4081

Gonca Kılıç Yıldırım 0000-0001-6769-667X

Publication Date June 24, 2024
Submission Date January 22, 2024
Acceptance Date March 13, 2024
Published in Issue Year 2024 Volume: 2 Issue: 1

Cite

Vancouver Bozdemir Özel C, Demirtas RN, Arslan A, Kılıç Yıldırım G. INVESTIGATION STRESS LEVEL, PERCEPTION OF SOCIAL SUPPORT, CAREGIVING BURDEN AND CORONAVIRUS PHOBIA OF CAREGIVERS OF CHILDREN WITH CYSTIC FIBROSIS DURING THE CORONAVIRUS PANDEMIC. JHUPTR. 2024;2(1):1-9.