Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument

Abstract

BackgroundInformal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.MethodsData was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.ResultsClinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.ConclusionsConstruct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol

“…Moreover, parents described themselves to be fairly happy, scoring more than a 7 on a 0–10 scale of happiness. This result is consistent with previous findings (Brouwer et al 2006; Hoefman et al 2011a, b, 2013b; Payakachat et al 2011). …”

“…low subjective burden or high family Qol). Other construct validation tests of the CarerQol instrument also show the diversity of problems that affect well-being among caregivers (Brouwer et al 2006; Hoefman et al 2011b, c, 2013b); however, whether the influence of the caring problems we found in this study are only specific for the care situation of children with an ASD, or apply to children with other care needs as well, is not yet clear. Further research into associates of well-being of parents of children suffering from other disorders or illnesses is needed.…”

“…The ability of the CarerQol to measure the impact of caring is supported by several construct validation studies, mostly performed in populations of caregivers for adults (Brouwer et al 2006; Hoefman et al 2011b, c, 2013b). To date, one set of validity tests of the CarerQol has been conducted among caregivers for children, in the specific context of children with craniofacial malformations (Payakachat et al 2011).…”

Burden on Informal Caregivers of Elderly Cancer Survivors: Risk Versus Resilience

“…According to previous studies of caregivers of elderly people with chronic disease, subjective or perceived burden appears more highly associated with caregiver distress, therefore this study aimed to specifically attend to this type of assessment (Pitceathly & Maguire, 2003;Schoenmakers, Buntinx, & Delepeleire, 2010). In addition, the BASC is specific to those caring for people with chronic illness (devised from 55% cancer caregivers), so it was highly relevant to the current sample, and furthermore, it isolated "burden" from assessment of QOL (a multidimensional construct other burden measures sometimes prefer to combine, for instance, see Hoefman, van Excel, & Brouwer, 2013). This was ideal for the current study given the intent was to assess QOL separately utilizing one of the most commonly used measurement systems in cancer (the FACIT system).…”

Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation

“…The importance of close-persons has been highlighted within EoL reports globally 12,[30][31][32] . Although a growing body of research seeks to include informal carers within economic evaluation 8,[33][34][35][36][37][38][39] , this is not yet the case for close-persons, yet the impacts of EoLC extend beyond carers to closepersons 40 . Important aspects of EoLC for those close to the dying are likely to lie outside the health domain as reflected in a recent analysis of complaints from relatives about EoLC 41 .…”