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Burden of informal care giving to patients with psychoses: A descriptive and methodological study

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  • Lena Flyckt
  • Anna Löthman
  • Leif Jörgensen
  • Anders Rylander
  • Thomas Koernig

Abstract

Background: There is a lack of studies of the size of burden associated with informal care giving in psychosis. Aims: To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden. Method: Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2. Results: One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems. Conclusion: Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.

Suggested Citation

  • Lena Flyckt & Anna Löthman & Leif Jörgensen & Anders Rylander & Thomas Koernig, 2013. "Burden of informal care giving to patients with psychoses: A descriptive and methodological study," International Journal of Social Psychiatry, , vol. 59(2), pages 137-146, March.
    • Handle: RePEc:sae:socpsy:v:59:y:2013:i:2:p:137-146
    DOI: 10.1177/0020764011427239
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    References listed on IDEAS

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    1. van den Berg, Bernard & Brouwer, Werner & van Exel, Job & Koopmanschap, Marc & van den Bos, Geertrudis A.M. & Rutten, Frans, 2006. "Economic valuation of informal care: Lessons from the application of the opportunity costs and proxy good methods," Social Science & Medicine, Elsevier, vol. 62(4), pages 835-845, February.
    2. Bernard Berg & Werner Brouwer & Marc Koopmanschap, 2004. "Economic valuation of informal care," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 5(1), pages 36-45, February.
    3. Bernard van den Berg & Pol Spauwen, 2006. "Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving," Health Economics, John Wiley & Sons, Ltd., vol. 15(5), pages 447-460, May.
    4. Franks, Peter & Muennig, Peter & Lubetkin, Erica & Jia, Haomiao, 2006. "The burden of disease associated with being African-American in the United States and the contribution of socio-economic status," Social Science & Medicine, Elsevier, vol. 62(10), pages 2469-2478, May.
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    1. Lena Flyckt & Helena Fatouros-Bergman & Thomas Koernig, 2015. "Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders," International Journal of Social Psychiatry, , vol. 61(7), pages 684-692, November.
    2. Masayuki Noguchi & Hisateru Tachimori & Yoichi Naganuma & Xianghua Zhao & Toshiaki Kono & Shigeo Horii & Tadashi Takeshima, 2016. "Families’ opinions about caring for patients with psychiatric disorders after involuntary hospitalization in Japan," International Journal of Social Psychiatry, , vol. 62(2), pages 167-175, March.

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