Skip to main content

Advertisement

SpringerLink
Log in

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients.

Method

We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires.

Results

Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden.

Conclusions

From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers’ need of support.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Weibull A, Olesen F, Neergaard MA (2008) Caregivers’ active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study. BMC Palliat Care 16 7:15-684X-7-15.

  2. Holm M, Henriksson A, Carlander I, Wengstrom Y, Ohlen J (2014) Preparing for family caregiving in specialized palliative home care: an ongoing process. Palliat Support Care 9:1–9. doi:10.1017/S1478951514000558

    Google Scholar 

  3. Williams AL, McCorkle R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care 9(3):315–325. doi:10.1017/S1478951511000265

    Article  PubMed  Google Scholar 

  4. Davis EL, Deane FP, Lyons GC (2014) Acceptance and valued living as critical appraisal and coping strengths for caregivers dealing with terminal illness and bereavement. Palliat Support Care 30:1–10. doi:10.1017/S1478951514000431

    Google Scholar 

  5. Burton AM, Sautter JM, Tulsky JA, Lindquist JH, Hays JC, Olsen MK, et al. (2012) Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers. J Pain Symptom Manag 44(3):410–420. doi:10.1016/j.jpainsymman.2011.09.018

    Article  Google Scholar 

  6. Thomas K, Hudson P, Trauer T, Remedios C, Clarke D (2014) Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: a longitudinal study. J Pain Symptom Manag 47(3):531–541. doi:10.1016/j.jpainsymman.2013.05.022

    Article  Google Scholar 

  7. Nanni MG, Biancosino B, Grassi L (2014) Pre-loss symptoms related to risk of complicated grief in caregivers of terminally ill cancer patients. J Affect Disord 60:87–91. doi:10.1016/j.jad.2013.12.023

    Article  Google Scholar 

  8. Hudson PL, Thomas K, Trauer T, Remedios C, Clarke D (2011) Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manag 41(3):522–534. doi:10.1016/j.jpainsymman.2010.05.006

    Article  Google Scholar 

  9. Tomarken A, Holland J, Schachter S, Vanderwerker L, Zuckerman E, Nelson C, et al. (2008) Factors of complicated grief pre-death in caregivers of cancer patients. Psychooncology 17(2):105–111

    Article  PubMed  PubMed Central  Google Scholar 

  10. Parker Oliver D, Albright DL, Washington K, Wittenberg-Lyles E, Gage A, Mooney M, et al. (2013) Hospice caregiver depression: the evidence surrounding the greatest pain of all. J Soc Work End Life Palliat Care 9(4):256–271. doi:10.1080/15524256.2013.846891

    Article  PubMed  Google Scholar 

  11. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, et al. (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 8 170(12):1795–1801

    Article  Google Scholar 

  12. Morishita M, Kamibeppu K (2014) Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. Support Care Cancer 22(10):2687–2696. doi:10.1007/s00520-014-2259-3

    Article  PubMed  Google Scholar 

  13. Kenny P, King MT, Hall J (2014) The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort. Health Soc Care Community 22(6):646–659. doi:10.1111/hsc.12136

    Article  PubMed  Google Scholar 

  14. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311(10):1052–1060. doi:10.1001/jama.2014.304

    Article  CAS  PubMed  Google Scholar 

  15. Bachner YG, O’Rourke N, Davidov E, Carmel S (2009) Mortality communication as a predictor of psychological distress among family caregivers of home hospice and hospital inpatients with terminal cancer. Aging Ment Health 13(1):54–63. doi:10.1080/13607860802154473

    Article  PubMed  Google Scholar 

  16. Hauksdottir A, Steineck G, Furst CJ, Valdimarsdottir U (2010) Long-term harm of low preparedness for a wife’s death from cancer—a population-based study of widowers 4-5 years after the loss. Am J Epidemiol 15 172(4):389–396. doi:10.1093/aje/kwq147

    Article  Google Scholar 

  17. Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL (2013) Informal caregiving for cancer patients. Cancer 1 119(11):2160–2169. doi:10.1002/cncr.28057

    Article  PubMed  Google Scholar 

  18. Hudson P (2013) Improving support for family carers: key implications for research, policy and practice. Palliat Med 27(7):581–582. doi:10.1177/0269216313488855

    Article  PubMed  Google Scholar 

  19. Danish Medicines Agency; (2013). Antallet af ansøgninger om individuelle tilskud i 2012 [Applications for individual drug reimbursement in 2012]. Available at: http://laegemiddelstyrelsen.dk/da/udgivelser/2013/antallet-af-ansoegninger-om-individuelle-tilskud-i-2012. Accessed 10 January 2016

  20. Danish Health and Medicines Authority (2015). Plejeorlov til pasning af nærtståendei hjemmet [Compassionate leave to care for a close relative at home]. Available at: https://www.sundhed.dk/borger/sygdomme-a-aa/sociale-ydelser/sociale-ydelser/ydelser/plejeorlov-til-pasning-af-naertstaaende-i-hjemmet/. Accessed 08 April 2015

  21. Statistics Denmark. Data for research (2014). Available at: http://www.dst.dk/en/TilSalg/Forskningsservice.aspx. Accessed 05 May 2015

  22. Vandenbroucke JP, von Elm E, Altman DG, Gotzsche PC, Mulrow CD, Pocock SJ, et al. (2014) Strengthening the reporting of observational studies in epidemiology (STROBE): explanation and elaboration. Int J Surg 12(12):1500–1524. doi:10.1016/j.ijsu.2014.07.014

    Article  PubMed  Google Scholar 

  23. Beck A, Steer R, Brown G (1996) Manual: Beck Depression Inventory, 2nd ed. The Psychological Corp., 2., edition edn. Hartcourt &Brace, San Antonio, Tx

    Google Scholar 

  24. Guldin MB, Vedsted P, Jensen AB, Olesen F, Zachariae R (2013) Bereavement care in general practice: a cluster-randomized clinical trial. Fam Pract 30(2):134–141. doi:10.1093/fampra/cms053

    Article  PubMed  Google Scholar 

  25. Warmenhoven F, van Rijswijk E, Engels Y, Kan C, Prins J, van Weel C, et al. (2012) The Beck Depression Inventory (BDI-II) and a single screening question as screening tools for depressive disorder in Dutch advanced cancer patients. Support Care Cancer 20(2):319–324. doi:10.1007/s00520-010-1082-8

    Article  PubMed  PubMed Central  Google Scholar 

  26. Christensen KS, Bech P, Fink P (2010) Measuring mental health by questionnaires in primary care-unidimensionality, responsiveness and compliance. European Psychiatric Review 3(1):8–12

    Google Scholar 

  27. Keller SD, Ware JE Jr, Bentler PM, Aaronson NK, Alonso J, Apolone G, et al. (1998) Use of structural equation modeling to test the construct validity of the SF-36 Health Survey in ten countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 51(11):1179–1188

    Article  CAS  PubMed  Google Scholar 

  28. Kurtz ME, Kurtz JC, Given CW, Given BA (2004) Depression and physical health among family caregivers of geriatric patients with cancer—a longitudinal view. Med Sci Monit 10(8):CR447–CR456

    PubMed  Google Scholar 

  29. Brogaard T, Neergaard MA, Guldin MB, Sokolowski I, Vedsted P (2013) Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers. Scand J Caring Sci 27(4):1018–1026. doi:10.1111/j.1471-6712.2012.01092.x

    Article  PubMed  Google Scholar 

  30. Grau H, Graessel E, Berth H (2015) The subjective burden of informal caregivers of persons with dementia: extended validation of the German language version of the Burden Scale for Family Caregivers (BSFC). Aging Ment Health 19(2):159–168. doi:10.1080/13607863.2014.920296

    Article  CAS  PubMed  Google Scholar 

  31. Asgeirsdottir HG, Valdimarsdottir U, Furst CJ, Steineck G, Hauksdottir A (2013) Low preparedness before the loss of a wife to cancer and the widower’s chronic pain 4-5 years later-a population-based study. Psychooncology 22(12):2763–2770. doi:10.1002/pon.3345

    Article  PubMed  Google Scholar 

  32. Bachner YG, Gesis-Za DE, Carmel S (2008) Caregivers’ communication with patients about illness and death: initial validation of a scale. Omega (Westport) 57(4):381–397

    Article  Google Scholar 

  33. Statistics Denmark (2015). Quality declarations Available at: http://www.dst.dk/en/Statistik/dokumentation/declarations. Accessed 05 May 2015

  34. Gjerstorff ML (2011) The Danish Cancer Registry. Scand J Public Health 39(7 Suppl):42–45. doi:10.1177/1403494810393562

    Article  PubMed  Google Scholar 

  35. Lynge E, Sandegaard JL, Rebolj M (2011) The Danish National Patient Register. Scand J Public Health 39(7 Suppl):30–33. doi:10.1177/1403494811401482

    Article  PubMed  Google Scholar 

  36. Sundararajan V, Quan H, Halfon P, Fushimi K, Luthi JC, Burnand B, et al. (2007) Cross-national comparative performance of three versions of the ICD-10 Charlson index. Med Care 45(12):1210–1215

    Article  PubMed  Google Scholar 

  37. Thygesen SK, Christiansen CF, Christensen S, Lash TL, Sorensen HT (2011) The predictive value of ICD-10 diagnostic coding used to assess Charlson comorbidity index conditions in the population-based Danish National Registry of Patients. BMC Med Res Methodol 28 11:83. doi:10.1186/1471-2288-11-83

    Article  PubMed  PubMed Central  Google Scholar 

  38. Ware JEJ, Gandek B, Kosinski M, Aaronson NK, Apolone G, Brazier J, et al. (1998) The equivalence of SF-36 summary health scores estimated using standard and country-specific algorithms in 10 countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 51(11):1167–1170

    Article  PubMed  Google Scholar 

  39. Li Q, Loke AY (2013) A spectrum of hidden morbidities among spousal caregivers for patients with cancer, and differences between the genders: a review of the literature. Eur J Oncol Nurs 17(5):578–587. doi:10.1016/j.ejon.2013.01.007

    Article  PubMed  Google Scholar 

  40. Ellervik C, Kvetny J, Christensen KS, Vestergaard M, Bech P (2014) Prevalence of depression, quality of life and antidepressant treatment in the Danish General Suburban Population Study. Nord J Psychiatry 29. doi:10.3109/08039488.2013.877074

  41. Gandek B, Ware JE Jr (1998) Methods for validating and norming translations of health status questionnaires: the IQOLA Project approach. International Quality of Life Assessment. J Clin Epidemiol 51(11):953–959

    Article  CAS  PubMed  Google Scholar 

  42. Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, et al. (2004) Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum, Nov 16 31(6):1105–1117

    Article  Google Scholar 

  43. Joanna Briggs Institute (2012) Caregiver burden of terminally-ill adults in the home setting. Nurs Health Sci 14(4):435–437

    Article  Google Scholar 

  44. Frank L (2000) Epidemiology. When an entire country is a cohort. Science 31 287(5462):2398–2399

    Article  CAS  PubMed  Google Scholar 

  45. Guldin MB, Vedsted P, Zachariae R, Olesen F, Jensen AB (2012) Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Support Care Cancer 20(8):1679–1685. doi:10.1007/s00520-011-1260-3

    Article  PubMed  Google Scholar 

  46. Statistics Denmark (2015). Dødsfald og middellevetid [Deaths and average lifespan]. Available at: http://www.dst.dk/da/Statistik/emner/doedsfald-og-middellevetid/doedsfald.aspx. Accessed 05 May 2015.

Download references

Acknowledgments

We wish to extend our profound gratitude towards patients and caregivers who participated in this study. Thanks to the staff at the Research Unit for General Practice, in particular IT specialist Hanne Beyer for setting up the database, professor Peter Vedsted and IT specialist Kaare Rud Flarup for providing us with access to the registry data from the Cancer in Primary and Secondary Sector (CAPS) database, statistician Anders Helles Carlsen for statistical assistance, and language editor Lone Niedziella for proof reading the manuscript.

This work was supported by the Danish Cancer Society, the Danish foundation TrygFonden, and the Danish Health Foundation (Helsefonden).

Author information

Authors and Affiliations

  1. Research Unit for General Practice, Aarhus University, Bartholins Allé 2, 8000, Aarhus C, Denmark

    Mette Kjaergaard Nielsen, Flemming Bro & Mai-Britt Guldin

  2. The Palliative Team, Department of Oncology, Aarhus University Hospital, Noerrebrogade 44, 8000, Aarhus C, Denmark

    Mette Asbjoern Neergaard & Mai-Britt Guldin

  3. Department of Oncology, Aarhus University Hospital, Noerrebrogade 44, 8000, Aarhus C, Denmark

    Anders Bonde Jensen

Authors
  1. Mette Kjaergaard Nielsen
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mette Asbjoern Neergaard
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Anders Bonde Jensen
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Flemming Bro
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Mai-Britt Guldin
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Mette Kjaergaard Nielsen.

Ethics declarations

According to the Committee on Health Research Ethics of the Central Denmark Region, the Danish Act on Research Ethics Review of Health Research Projects did not apply to this study as questionnaire surveys generally do not require ethical clearance. The study was approved by the Danish Data Protection Agency (File no. 2013–41-2603).

Disclosures

None

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Nielsen, M.K., Neergaard, M.A., Jensen, A.B. et al. Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study. Support Care Cancer 24, 3057–3067 (2016). https://doi.org/10.1007/s00520-016-3120-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-016-3120-7

Keywords

Search

Navigation