nach oben

Quality of Life Research

Erschienen in:

04.02.2019

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

verfasst von: Rebecca Maguire, Paul Hanly, Phil Maguire

Erschienen in: Quality of Life Research | Ausgabe 8/2019

Einloggen, um Zugang zu erhalten

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.

Nur mit Berechtigung zugänglich

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRefPubMed

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

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMedPubMedCentral

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.

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.CrossRef

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

24.

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

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.

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.CrossRefPubMed

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.CrossRefPubMed

29.

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

30.

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

31.

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

32.

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

33.

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

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.CrossRef

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

37.

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

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.CrossRef

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

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.CrossRefPubMed

43.

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

44.

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

Titel: Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe
verfasst von: Rebecca Maguire
Paul Hanly
Phil Maguire
Publikationsdatum: 04.02.2019
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 8/2019
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-019-02122-y

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 8/2019

Factors associated with health-related quality of life (HRQoL): differential patterns depending on age

Comparison of three generic quality-of-life metrics in peripheral arterial disease patients undergoing conservative and invasive treatments

Comparing internet and face-to-face surveys as methods for eliciting preferences for social care-related quality of life: evidence from England using the ASCOT service user measure

Factors associated with low health-related quality of life among younger and older Thai patients with non-valvular atrial fibrillation

Correction to: Main and interactive effects of inflammation and perceived neighbourhood cohesion on psychological distress: results from a population-based study in the UK

Food-related quality of life in patients with inflammatory bowel disease and irritable bowel syndrome