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. 2025 Apr 17.
doi: 10.1007/s10198-025-01776-5. Online ahead of print.

Deterioration of health-related quality of life: the hidden health burden of informal caregiving

Syed Afroz Keramat  1 , Prianka Maria Sarker  2 , Tracy Comans  3 , Deborah Brooks  4 , Nadeeka N Dissanayaka  4
Affiliations

Deterioration of health-related quality of life: the hidden health burden of informal caregiving

Syed Afroz Keramat et al. Eur J Health Econ. .

Abstract

Informal caregiving is physically and mentally demanding and may lead to poor health and impaired well-being. We aim to check the effects of informal caregiving on health-related quality of life (HRQoL). We utilised longitudinal data from the most recent sixteen waves of the Household, Income and Labour Dynamics in Australia (HILDA) Survey. We measured HRQoL through the physical component summary (PCS), the mental component summary (MCS), the short-form six-dimension (SF-6D) utility index, and the eight dimensions of the SF-36 health survey. The primary exposure variable is informal caregiving. The variable was categorised into not a caregiver, lighter (< 5 hours [h]/week), moderate (5-19 h/week), and intensive (≥ 20 h/week) caregiving based on the hours of providing informal care per week. We have found that informal caregiving negatively affects HRQoL. We found that moderate (β = -0.0035, standard error [SE] = 0.0012) and intensive caregiving (β = -0.0074, SE = 0.0020) reduced SF-6D utility value. We also found that lighter (β = -0.29, SE = 0.07), moderate (β = -0.55, SE = 0.12), and intensive (β = -1.53, SE = 0.19) caregiving lowered MCS scores. Moreover, our results revealed that lighter, moderate and intensive caregiving decreases the scores of mental health-related dimensions (e.g., role emotional, social functioning, and mental health) of the SF-36 health survey. Our study findings have significant policy implications for improving the HRQoL and well-being of caregivers. To effectively support the health and well-being of informal carers, it is crucial to implement strategies that address their diverse needs, including supporting work-life balance, providing financial assistance and social security measures, ensuring access to community-based services, providing access to relevant information and training, and offering respite care options.

Keywords: Australia; Health-related quality of life; Informal caregiving; MCS; PCS; SF-6D utility index.

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Conflict of interest statement

Declarations. Ethics approval: The HILDA Survey commenced in 2001 and since then has been conducted annually following the University of Melbourne’s ethical guidelines. This research project has been approved by the Human Research Ethics Committee of The University of Melbourne. The ethics ID number of the research project (HILDA Survey) is 1647030. This paper uses unit record data from the HILDA conducted by the Australian Government Department of Social Services (DSS). This study did not require ethical approval as the analysis used only de-identified existing unit record data from the HILDA Survey. Consent to participate: Informed consent to participate in the HILDA Survey was gained through the use of an information letter to all potential respondents. This letter described the voluntary nature of participation in The Survey and outlined that informed consent would be implied when participants agreed to be interviewed. Further, more detailed information about the purposes of the HILDA was sent after the interview to Wave 1 respondents (and any new sample members at later waves), along with further information about the way the data are being held, what is being done with the data, and how individuals can, on request (but after undergoing a range of security checks), access that information. Competing interests: The authors declare that they have no conflicts of interest.

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