SpringerLink
Log in

Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.

Methods

We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures.

Results

36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being.

Conclusions

Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.

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

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

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. Calvo-Perxas, L., Vilalta-Franch, J., Litwin, H., Turro-Garriga, O., Mira, P., & Garre-Olmo, J. (2018). What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries. PLoS ONE, 13(3), e0194232. https://doi.org/10.1371/journal.pone.0194232.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  2. Kaschowitz, J., & Brandt, M. (2017). Health effects of informal caregiving across Europe: A longitudinal approach. Social Science & Medicine, 173, 72–80. https://doi.org/10.1016/j.socscimed.2016.11.036.

    Article  Google Scholar 

  3. Verbakel, E., Tamlagsronning, S., Winstone, L., Fjaer, E., & Eikemo, T. (2017). Informal care in Europe: Findings from the European Social Survey (2014) special module on the social determinants of health. European Journal of Public Health, 27, 90–95. https://doi.org/10.1093/eurpub/ckw229.

    Article  PubMed  Google Scholar 

  4. Gately, M., & Ladin, K. (2018). Family and other caregivers. In T. Daaleman & M. Helton (Eds.), Chronic illness care. Cham: Springer.

    Google Scholar 

  5. Pinquart, M., & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250–267. https://doi.org/10.1037/0882-7974.18.2.250.

    Article  PubMed  Google Scholar 

  6. Verbakel, E. (2014). Informal caregiving and well-being in Europe: What can ease the negative consequences for caregivers? Journal of European Social Policy, 24(5), 424–441. https://doi.org/10.1177/0958928714543902.

    Article  Google Scholar 

  7. Berglund, E., Lytsy, P., & Westerling, R. (2015) Health and wellbeing in informal caregivers and non-caregivers: A comparative cross-sectional study of the Swedish a general population. Health and Quality of Life Outcomes. https://doi.org/10.1186/s12955-015-0309-2.

    Article  PubMed  PubMed Central  Google Scholar 

  8. De Oliveira, D. C., & Hlebec, V. (2016). Predictors of satisfaction with life in family carers: Evidence from the third European Quality of Life Survey. Teorija in Praksa, 53(2), 503–523.

    Google Scholar 

  9. Rafnsson, S., Shankar, A., & Steptoe, A. (2017). Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing. Aging & Mental Health, 21(1), 104–112. https://doi.org/10.1080/13607863.2015.1088510.

    Article  Google Scholar 

  10. Litzelman, K., Kent, E., Mollica, M., & Rowland, J. (2016). How does caregiver well-being relate to perceived quality of care in patients with cancer? Exploring associations and pathways. Journal of Clinical Oncology, 34(29), 3554–3554+. https://doi.org/10.1200/JCO.2016.67.3434.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Sullivan, A. B., & Miller, D. (2015). Who is taking care of the caregiver? Journal of Patient Experience, 2(1), 7–12. https://doi.org/10.1177/237437431500200103.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Adelman, R., Tmanova, L., Delgado, D., Dion, S., & Lachs, M. (2014). Caregiver burden—A clinical review. JAMA-Journal of the American Medical Association, 311(10), 1052–1059. https://doi.org/10.1001/jama.2014.304.

    Article  CAS  Google Scholar 

  13. Bastawrous, M. (2013). Caregiver burden—A critical discussion. International Journal of Nursing Studies, 50(3), 431–441. https://doi.org/10.1016/j.ijnurstu.2012.10.005.

    Article  PubMed  Google Scholar 

  14. Maguire, R., Hanly, P., Hyland, P., & Sharp, L. (2018) Understanding burden in caregivers of colorectal cancer survivors: What role do patient and caregiver factors play? European Journal of Cancer Care (England). https://doi.org/10.1111/ecc.12527.

    Article  Google Scholar 

  15. Verbakel, E. (2018). How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms. Scandinavian Journal of Public Health, 46(4), 436–447. https://doi.org/10.1177/1403494817726197.

    Article  PubMed  Google Scholar 

  16. Ruppanner, L., & Bostean, G. (2014). Who cares? Caregiver well-being in Europe. European Sociological Review, 30(5), 655–669. https://doi.org/10.1093/esr/jcu065.

    Article  Google Scholar 

  17. O’Reilly, D., Rosato, M., Maguire, A., & Wright, D. (2015). Caregiving reduces mortality risk for most caregivers: A census-based record linkage study. International Journal of Epidemiology, 44(6), 1959–1969. https://doi.org/10.1093/ije/dyv172.

    Article  PubMed  Google Scholar 

  18. Roth, D., Fredman, L., & Haley, W. (2015). Informal caregiving and its impact on health: A reappraisal from population-based studies. Gerontologist, 55(2), 309–319. https://doi.org/10.1093/geront/gnu177.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Inagaki, T., & Orehek, E. (2017). On the benefits of giving social support: When, why, and how support providers gain by caring for others. Current Directions in Psychological Science, 26(2), 109–113. https://doi.org/10.1177/0963721416686212.

    Article  Google Scholar 

  20. Leventhal, H. O. R., Brissette, I., & Leventhal, E. A. (2003). The common-sense model of self-regulation of health and illness. In L. Cameron & H. Leventhal (Eds.), The self-regulation of health and illness behaviour (pp. 42–65). New York: Routledge.

    Google Scholar 

  21. Chambers, S., Baade, P., Youl, P., Aitken, J., Occhipinti, S., Vinod, S., Valery, P., Garvey, G., Fong, K., Ball, D., Zorbas, H., Dunn, J., & O’Connell, D. (2015). Psychological distress and quality of life in lung cancer: The role of health-related stigma, illness appraisals and social constraints. Psycho-oncology, 24(11), 1569–1577. https://doi.org/10.1002/pon.3829.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Maguire, R., Hanly, P., Drummond, F. J., Gavin, A., & Sharp, L. (2018). Expecting the worst? The relationship between retrospective and prospective appraisals of illness on quality of life in prostate cancer survivors. Psychooncology, 27(4), 1237–1243. https://doi.org/10.1002/pon.4660.

    Article  PubMed  Google Scholar 

  23. Moskowitz, J., Wrubel, J., Hult, J., Maurer, S., & Acree, M. (2013) Illness appraisals and depression in the first year after HIV diagnosis. PLoS ONE. https://doi.org/10.1371/journal.pone.0078904.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Hanks, R., Rapport, L., & Vangel, S. (2007). Caregiving appraisal after traumatic brain injury: The effects of functional status, co** style, social support and family functioning. Neurorehabilitation, 22(1), 43–52.

    Article  Google Scholar 

  25. Scheier, M. F., Carver, C. S., & Bridges, M. W. (2001). Optimism, pessimism, and psychological well-being. Optimism and Pessimism: Implications for Theory, Research, and Practice, 1, 189–216.

    Google Scholar 

  26. Dias, R., Santos, R. L., Sousa, M. F., Nogueira, M. M., Torres, B., Belfort, T., & Dourado, M. C. (2015). Resilience of caregivers of people with dementia: A systematic review of biological and psychosocial determinants. Trends in Psychiatry Psychotherapy, 37(1), 12–19. https://doi.org/10.1590/2237-6089-2014-0032.

    Article  PubMed  Google Scholar 

  27. Conditions. EFftIoLaW (2018) European Quality of Life Survey integrated data file, 2003-2016 [data collection] (3rd ed.). https://doi.org/10.5255/UKDA-SN-7348-3

  28. Topp, C., Ostergaard, S., Sondergaard, S., & Bech, P. (2015). The WHO-5 Well-Being Index: A systematic review of the literature. Psychotherapy and Psychosomatics. https://doi.org/10.1159/000376585.

    Article  PubMed  Google Scholar 

  29. Burnham, K., & Anderson, D. (2002). Model selection and multimodel inference (2nd ed.). New York, NY: Springer.

    Google Scholar 

  30. Xu, R. (2003). Measuring explained variation in linear mixed effects models. Statistics in Medicine, 22(22), 3527–3541.

    Article  Google Scholar 

  31. Little, R. J., & Rubin, D. B. (2014). Statistical analysis with missing data, vol 333. Hoboken: Wiley.

    Google Scholar 

  32. Lorah, J. (2018). Effect size measures for multilevel models: Definition, interpretation, and TIMSS example. Large-Scale Assessments in Education, 6(1), 8.

    Article  Google Scholar 

  33. Lee, V. E. (2000). Using hierarchical linear modeling to study social contexts: The case of school effects. Educational Psychologist, 35(2), 125–141.

    Article  Google Scholar 

  34. Kamradt, M., Krisam, J., Kiel, M., Qreini, M., Besier, W., Szecsenyi, J., & Ose, D. (2017). Health-related quality of life in primary care: Which aspects matter in multimorbid patients with type 2 diabetes mellitus in a community setting? PLoS ONE, 12(1), e0170883.

    Article  Google Scholar 

  35. van Wijngaarden, E., van der Wedden, H., Henning, Z., Komen, R., & The, A. M. (2018). Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. PLoS ONE, 13(6), e0198034. https://doi.org/10.1371/journal.pone.0198034.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  36. Maguire, R., Hanly, P., Balfe, M., Timmons, A., Hyland, P., O’Sullivan, E., Butow, P., & Sharp, L. (2017). Worry in head and neck cancer caregivers: The role of survivor factors, care-related stressors, and loneliness in predicting fear of recurrence. Nursing Research, 66(4), 295–303. https://doi.org/10.1097/NNR.0000000000000223.

    Article  PubMed  Google Scholar 

  37. Hellman, C. M., Worley, J. A., & Munoz, R. T. (2018). Hope as a co** resource for caregiver resilience and well-being. In W. Bailey & A. Harrist (Eds.), Family caregiving. emerging issues in family and individual resilience. Cham: Springer.

    Google Scholar 

  38. Halinski, M., Duxbury, L., & Higgins, C. (2018). Working while caring for mom, dad, and junior too: Exploring the impact of employees’ caregiving situation on demands, control, and perceived stress. Journal of Family Issues. https://doi.org/10.1177/0192513X18777839.

    Article  Google Scholar 

  39. Lou, S., Carstensen, K., Jorgensen, C. R., & Nielsen, C. P. (2017). Stroke patients’ and informal carers’ experiences with life after stroke: An overview of qualitative systematic reviews. Disability and Rehabilitation, 39(3), 301–313. https://doi.org/10.3109/09638288.2016.1140836.

    Article  PubMed  Google Scholar 

  40. Elliott, T., Berry, J., Richards, J., & Shewchuk, R. (2014). Resilience in the initial year of caregiving for a family member with a traumatic spinal cord injury. Journal of Consulting and Clinical Psychology, 82(6), 1072–1086. https://doi.org/10.1037/a0037593.

    Article  PubMed  Google Scholar 

  41. Roen, I., Stifoss-Hanssen, H., Grande, G., Brenne, A. T., Kaasa, S., Sand, K., & Knudsen, A. K. (2018) Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers. Palliative Medicine. https://doi.org/10.1177/0269216318777656.

    Article  PubMed  Google Scholar 

  42. Limardi, S., Stievano, A., Rocco, G., Vellone, E., & Alvaro, R. (2016). Caregiver resilience in palliative care: A research protocol. Journal of Advanced Nursing, 72(2), 421–433. https://doi.org/10.1111/jan.12829.

    Article  PubMed  Google Scholar 

  43. Lloyd, J., Muers, J., Patterson, T. G., & Marczak, M. (2018). Self-compassion, co** strategies, and caregiver burden in caregivers of people with dementia. Clinical Gerontologist. https://doi.org/10.1080/07317115.2018.1461162.

    Article  PubMed  Google Scholar 

  44. Helgeson, V., Jakubiak, B., Van Vleet, M., & Zajdel, M. (2018). Communal co** and adjustment to chronic illness: Theory update and evidence. Personality and Social Psychology Review, 22(2), 170–195. https://doi.org/10.1177/1088868317735767.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Psychology, Maynooth University, Maynooth, Co. Kildare, Ireland

    Rebecca Maguire

  2. School of Business, National College of Ireland, Dublin, Ireland

    Paul Hanly

  3. Department of Computer Science, Maynooth University, Maynooth, Co. Kildare, Ireland

    Phil Maguire

Authors
  1. Rebecca Maguire
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Paul Hanly
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Phil Maguire
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Rebecca Maguire.

Ethics declarations

Conflict of interest

All authors declare that they have no conflicts of interest.

Ethical approval

Ethical approval to conduct the current analysis was granted by Maynooth University (Reference Number SREC-2018-084). For the EQLS, all procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the EQLS survey (see [26] for details).

Research involving human and animal participants

This article does not contain any studies with human participants or animals performed by any of the authors; however, this does involve secondary analysis performed on a dataset that involved human participants.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Online Appendix 1 (DOCX 24 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Maguire, R., Hanly, P. & Maguire, P. Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe. Qual Life Res 28, 2135–2146 (2019). https://doi.org/10.1007/s11136-019-02122-y

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-019-02122-y

Keywords

Search

Navigation