Care Recipient Perceived Burden to Others: Assessing Measurement to Inform Health and Social Care

In the context of chronic illness care and aging, two critical concepts emerge: caregiver burden and the care recipient's self-perceived burden (CR-SPB) to caregivers. CR-SPB refers to the perceived impact of the care recipient's illness and care needs on the physical, social, emotional, and financial well-being of the caregiver. This burden can adversely affect the care recipient's quality of life and influence decision-making, including end-of-life care. However, CR-SPB remains an overlooked and understudied aspect within the caregiver-care recipient relationship. The overarching goal of this paper-based dissertation was to enhance the understanding of the theoretical foundations and measurement of the quality of life and well-being of caregivers and care recipients, with a focus on CR-SPB, ultimately advancing clarity on its roles and potential applications within health and social care contexts. This dissertation research comprised four studies that used mixed methods approaches to address specific research questions and objectives. Study 1 explored caregiver burden through qualitative research, identifying its components from the patient's perspective and assessing its importance in healthcare decision-making. The study developed a CR-SPB instrument with face and content validity, capturing the multidimensional nature of CR-SPB. Study 2 examined the construct validity of a new set of items forming the new CR-SPB Scale from two proxy-perspectives: one perspective is directly from the care recipients themselves (CR-SPB-CR). The other perspective represents the caregiver's perceived burden, as interpreted by care recipients when asked to imagine themselves in the caregivers' shoes (proxy-CB). Psychometric testing supported the construct validity of the CR-SPB items. Study 2 additionally examined whether CR-SPB as a construct differs from caregiver burden and other health and social care constructs. The findings established CR-SPB as a distinct construct, while the proxy-CB perspective aligned closely with the caregiver's assessment. Study 3 evaluated the agreement between caregiver burden (self-assessed by the caregiver) and CR-SPB from two proxy-perspectives: CR-SPB-CR and proxy-CB. The results showed varying levels of agreement across burden domains, with financial burden demonstrating substantial agreement. The care recipient's proxy-CB perspective aligned more closely with the caregiver's assessment. Lastly, Study 4 evaluated the comparative performance of health and well-being measures for caregivers and assessed the psychometric properties of the EQ Health and Well-being measures (EQ-HWB/EQ-HWB-S) within the caregiver population in the United States. The study demonstrates the construct validity of EQ-HWB and EQ-HWB-S, highlighting their comparable performance to existing caregiver-based outcome measures. In conclusion, this dissertation significantly advances the understanding of caregiver and care recipient well-being by focusing on CR-SPB within the caregiver-care recipient dyad. CR-SPB emerges as a unique construct, separate from caregiver burden and other health and well-being constructs. The Care Recipient Self-perceived burden Scale (CR-SPB-Scale) is introduced as an invaluable tool for measuring CR-SPB from the care recipient view and can serve as a proxy for caregiver burden. The findings have implications for health economics and outcomes research field and clinical practice in informal caregiving, aiming to improve the well-being and quality of life for caregivers and care recipients.