Advertisement

Journal of Child and Family Studies

, Volume 28, Issue 5, pp 1304–1312 | Cite as

Anxiety and Depression in Parent Caregivers of Children with Cystic Fibrosis

  • Jennifer Cronly
  • Aine M. Horgan
  • Elaine Lehane
  • Barbara Howe
  • Alistair J. Duff
  • Kristin A. Riekert
  • Ivan J. Perry
  • Anthony P. Fitzgerald
  • Muireann Ni Chroinin
  • Eileen SavageEmail author
Original Paper
  • 82 Downloads

Abstract

Objectives

Parents of children with cystic fibrosis (CF) are at risk of depression and anxiety symptoms, yet, they are an under-researched group. This national cross-sectional study investigated the prevalence of anxiety and depression in parents of children with CF, and examined the associations between these symptoms and their child’s physical health and quality of life.

Methods

A total of 203 parents of children attending nine paediatric CF clinics across Ireland filled out a questionnaire pack containing: a background information questionnaire; the Hospital Anxiety and Depression Scale (HADS); the Centre for Epidemiological Studies Depression Scale (CES-D); and, the Cystic Fibrosis Quality of Life Scale—Revised Edition (CFQ-R).

Results

According to the HADS, 38% of parents had elevated anxiety and 12% had elevated depression symptoms. Just over a fifth (20.7%) had elevated depression symptoms on the CES-D. Mothers had significantly higher levels of anxiety than fathers. There were statistically significant negative linear correlations between parents’ HADS anxiety and depression scores and their child’s pulmonary function, and between parents’ HADS anxiety and depression scores and their child’s quality of life.

Conclusions

These results indicate that parents are at risk of depression and anxiety symptoms, and that these are associated with the physical health and quality of life of their child with CF. The findings support the need for parents to have mental health screening annually in CF services, as recommended in international guidelines. There is also a need to integrate a family-centred approach into CF services with appropriate supports and mental health referral pathways for parents.

Keywords

Anxiety Cystic fibrosis Depression Parent caregivers Health-related quality of life 

Notes

Acknowledgements

The authors wish to thank all the parents who participated in the study as well as the CF multi-disciplinary teams who assisted with access and data collection. This study was jointly funded by Cystic Fibrosis Ireland and the Health Research Board of Ireland (Ref no.: MRCG/2011/9). The funders had no input into the data analysis, the interpretation of the results, the dissemination of findings or the compilation of this document.

Author Contributions

J.C. prepared for ethical approval, negotiated access, collected data, conducted analysis, interpreted results, and drafted the manuscript. A.M.H. offered insights into mental health screening and contributed to interpretation of the results. E.L. supported data analysis and interpretations of the results. B.H. prepared for ethical approval and collected data. A.J.D. & K.A.R. contributed to the design and application for funding, offered critical insights into mental health screening, contributed to interpretation of the results and edited the manuscript. I.J.P. & A.P.F. contributed to design, application for funding, data analysis and interpretation of results. M.Ni.C. contributed to design and application for funding. E.S. designed the study and applied for funding, prepared for ethical approval, negotiated access and drafted the manuscript. All authors have read, edited, and approved the manuscript.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Ethical Apprval

The authors confirm compliance with ethical standards. All procedures performed in the conduct of this study which involved human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All parent caregiver participants were provided with an information leaflet and gave their informed consent prior to participation. Ethical approval was obtained from the Research Ethics Committee affiliated to University College Cork.

References

  1. Abbott, J., Elborn, J. S., Georgiopoulos, A., Goldbeck, L., Marshall, B., & Sabadosa, K., et al. (2015). Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery. Journal of Cystic Fibrosis, 14, 533–539.CrossRefGoogle Scholar
  2. Anderson, D., Flume, P., & Hardy, K. (2001). Psychological functioning of adults with cystic fibrosis. Chest, 119, 1079–1084.CrossRefGoogle Scholar
  3. Backstrom-Eriksson, L., Sorjonen, K., Bergsten-Brucefors, A., Hjelte, L., & Melin, B. (2015). Anxiety and depression in adults with cystic fibrosis: a comparison between patients and the general population in Sweden and three other European countries. BMC Pulmonary Medicine, 15, 121.CrossRefGoogle Scholar
  4. Barker, D. H., & Quittner, A. L. (2016). Parental depression and pancreatic enzymes adherence in children with cystic fibrosis. Pediatrics, 137, e20152296CrossRefGoogle Scholar
  5. Bergsten Brucefors, A., Hochwalder, J., Sjovall, S., & Hjelte, L. (2015). Depression and anxiety among parents of children with cystic fibrosis related to the children’s health related quality of life. Open Journal of Nursing, 5, 482–489.CrossRefGoogle Scholar
  6. Besier, T., Born, A., Henrich, G., Hinz, A., & Quittner, A. (2011). Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatric Pulmonology, 46, 672–682.CrossRefGoogle Scholar
  7. Besier, T., & Goldbeck, L. (2011). Anxiety and depression in adolescents with CF and their caregivers. Journal of Cystic Fibrosis, 10, 435–442.CrossRefGoogle Scholar
  8. Bjelland, I., Dahl, A., Haug, T., & Neckelmann, D. (2002). The validity of the hospital anxiety and depression scale: an updated literature review. Journal of Psychosomatic Research, 52, 69–77.CrossRefGoogle Scholar
  9. Catastini, P., Di Marco, S., Furriolo, M., Genovese, C., Grande, A., & Lactini, E., et al. (2016). The prevalence of anxiety and depression in Italian patients with cystic fibrosis and their caregivers. Pediatric Pulmonology, 51, 1311–1319.CrossRefGoogle Scholar
  10. Committee on Hospital Care. (2012). Patient- and family-centred care and the pediatrician’s role. Pediatrics, 129, 394–404.CrossRefGoogle Scholar
  11. Cronly, J., Duff, A., Riekert, K., Perry, I., Fitzgerald, A., & Horgan, A., et al. (2018). Online versus paper-based screening for depression and anxiety in adults with cystic fibrosis in Ireland: a cross-sectional exploratory study. British Medical Journal Open, 8, e019305  https://doi.org/10.1136/bmjopen-2017-019305.Google Scholar
  12. Driscoll, K., Montag-Leifling, K., Acton, J., & Modi, A. (2009). Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis. Pediatric Pulmonology, 44, 784–792.CrossRefGoogle Scholar
  13. Duff, A., Abbott, J., Cowperthwaite, C., Sumner, C., Hurley, M., & Quittner, A. (2014). Depression and anxiety in adolescents and adults with cystic fibrosis in the UK: A cross-sectional study. Journal of Cystic Fibrosis, 13, 745–753.CrossRefGoogle Scholar
  14. Easter, G., Sharpe, L., & Hunt, C. (2015). Systematic review and meta-analysis of anxious and depressive symptoms in caregivers of children with asthma. Journal of Pediatric Psychology, 40, 623–632.CrossRefGoogle Scholar
  15. Ehre, C., Ridley, C., & Thornton, D. (2014). Cystic fibrosis: An inherited disease affecting mucin-producing organs. The International Journal of Biochemistry and Cell Biology, 52, 136–145.CrossRefGoogle Scholar
  16. Fidika, A., Herle, M., Lehmann, C., Weiss, C., Knaevelsrud, C., & Goldbeck, L. (2015). A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study. Health and Quality of Life Outcomes, 13, 11  https://doi.org/10.1186/s12955-015-0211-y.CrossRefGoogle Scholar
  17. Grossoehme, D., Spear Filigno, S., & Bishop, M. (2014). Parent routines for managing cystic fibrosis in children. Journal of Clinical Psychology in Medical Settings, 21, 125–135.CrossRefGoogle Scholar
  18. Haringsma, R., Engels, G., Beekman, A., & Spinhoven, P. (2004). The criterion validity of the Center for Epidemiological Studies Depression Scale (CES-D) in a sample of self-referred elders with depressive symptomatology. International Journal of Geriatric Psychiatry, 19, 558–563.CrossRefGoogle Scholar
  19. Hayes, C., & Savage, E. (2008). Fathers’ perspectives on the emotional impact of managing the care of their children with cystic fibrosis. Journal of Pediatric Nursing, 23, 250–256.CrossRefGoogle Scholar
  20. Hunt, M., Auriemma, J., & Cashaw, A. (2003). Self-report bias and underreporting of depression on the BDI-II. Journal of Personality Assessment, 80, 26–30.CrossRefGoogle Scholar
  21. Keogh, R. H., Szczesniak, R., Taylor-Robinson, D., & Bilton, D. (2018). Up-to-date and projected estimates of survival for people with cystic fibrosis using baseline characteristics: A longitudinal study using UK patient registry data. Journal of Cystic Fibrosis, 17, 218–227.CrossRefGoogle Scholar
  22. Modi, A., & Quittner, A. (2003). Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. Journal of Pediatric Psychology, 28, 535–545.CrossRefGoogle Scholar
  23. Pollock, R. M. (2005). The Treatment of Cystic Fibrosis in Ireland: Problems and Solutions. Dublin, Ireland: Health Services Executive.Google Scholar
  24. Quittner, A., Abbott, J., Georgiopoulos, A., Goldbeck, L., Smith, B., & Hempstead, S., et al. (2016). International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosos Society consensus statements for screening and treating depression and anxiety. Thorax, 71, 26–34.CrossRefGoogle Scholar
  25. Quittner, A., Barker, D., Geller, D., Butt, S., & Gondor, M. (2007). Effects of maternal depression on electronically monitored enzyme adherence and changes in weight for children with CF. Journal of Cystic Fibrosis, 6, S77.CrossRefGoogle Scholar
  26. Quittner, A., Buu, A., Messer, M., Modi, A., & Watrous, M. (2005). Development and validation of the cystic fibrosis questionnaire in the United States: a health-related quality of life measure for cystic fibrosis. Chest, 198, 2347–2354.CrossRefGoogle Scholar
  27. Quittner, A., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., & Sole, A., et al. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of the international depression epidemiological study across nine countries. Thorax, 69, 1090–1097.CrossRefGoogle Scholar
  28. Radloff, L. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.CrossRefGoogle Scholar
  29. Savage, E., & Callery, P. (2005). Weight and energy: parents’ and children’s perspectives on managing cystic fibrosis diet. Archives of Disease in Childhood, 90, 249–252.CrossRefGoogle Scholar
  30. Savage, E., & Callery, P. (2007). Clinic consultations with children and parents on the dietary management of cystic fibrosis. Social Science and Medicine, 64, 363–374.CrossRefGoogle Scholar
  31. Savage, E., O’Riordan, A., & Hughes, M. (2009). Quality of life in children with acute lymphoblastic leukaemia. European Journal of Oncology Nursing, 13, 36–48.CrossRefGoogle Scholar
  32. Seed, L., Wilson, D., & Coates, A. (2012). Children should not be treated like little adults in the PFT lab. Respiratory Care, 57, 61–74.CrossRefGoogle Scholar
  33. Shields, L., Pratt, J., Davis, L., & Hunter, J. (2007). Family-centred care for children in hospital. The Cochrane Database of Systematic Reviews, 1, CD004811  https://doi.org/10.1002/14651858.CD004811.pub2.Google Scholar
  34. Shields, L., Pratt, J., & Hunter, J. (2006). Family centred care: a review of qualitative studies. Journal of Clinical Nursing, 15, 1317–1323.CrossRefGoogle Scholar
  35. Simmonds, N. J. (2013). Ageing in cystic fibrosis and long-term survival. Paediatric Respiratory Reviews, 14, S6–S9.CrossRefGoogle Scholar
  36. Smarr, K., & Keefer, A. (2011). Measures of depression and depressive symptoms: Beck Depression Invetory-II (BDI-II), Center for Epidemiologic Studies Depression Scale (CES-D), Geriatric Depression Scale (GDS), Hospital Anxiety and Depression Scale (HADS), and Patient Health Questionnaire-9 (PHQ-9). Arthritis Care and Research, 63, S454–S466.CrossRefGoogle Scholar
  37. Smyth, A., Bell, S., Bojcin, S., Bryon, M., Duff, A., & Flume, P., et al. (2014). European Cystic Fibrosis Society Standards of Care: best practice guidelines. Journal of Cystic Fibrosis, 13, S23–S42.CrossRefGoogle Scholar
  38. Tuchman, L., Schwartz, L., Sawicki, G., & Britto, M. (2010). Cystic fibrosis and transition to adult medical care. Pediatrics, 125, 566–573.CrossRefGoogle Scholar
  39. Webb, K., & Bryon, M. (2014). The International Depression Epidemiological Study (TIDES): unfinished business? Thorax, 69, 1067–1068.CrossRefGoogle Scholar
  40. Whittemore, R., Jaser, S., Chao, A., Jang, M., & Grey, M. (2012). Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. Diabetes Educator, 38, 562–579.CrossRefGoogle Scholar
  41. Wong, M. G., & Heriot, S. A. (2008). Parents of children with cystic fibrosis: how they hope, cope and despair. Child: Care, Health and Development, 34, 344–354.Google Scholar
  42. Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Jennifer Cronly
    • 1
  • Aine M. Horgan
    • 1
  • Elaine Lehane
    • 1
  • Barbara Howe
    • 1
  • Alistair J. Duff
    • 2
    • 3
  • Kristin A. Riekert
    • 4
  • Ivan J. Perry
    • 5
  • Anthony P. Fitzgerald
    • 6
  • Muireann Ni Chroinin
    • 7
  • Eileen Savage
    • 1
    Email author
  1. 1.Catherine McAuley School of Nursing & Midwifery, Brookfield Health Science ComplexUniversity College CorkCorkIreland
  2. 2.Department of Clinical & Health PsychologyLeeds Teaching Hospitals NHS TrustLeedsUK
  3. 3.Institute of Health SciencesUniversity of LeedsLeedsUK
  4. 4.Johns Hopkins Adherence Research CenterJohns Hopkins School of MedicineBaltimoreUSA
  5. 5.School of Public Health, Western Gate BuildingUniversity College CorkCorkIreland
  6. 6.School of Public Health and Department of Statistics, Western Gate BuildingUniversity College CorkCorkIreland
  7. 7.Department of PaediatricsCork University HospitalCorkIreland

Personalised recommendations