Who cares for the caregivers? A mixed methods investigation: employing in-depth interviews and an online survey to determine the factors impacting on caregivers' capacity to care

Abstract

New Zealand, as with the rest of the world, faces challenges in the future provision of long-term care. As demand surpasses the supply of formal support services, there is an increasing international trend for informal carers to provide most of this care. Global ageing populations, deinstitutionalisation, ageing-in-place, the changing role of women and advances in healthcare all increase the importance of the role of informal caregivers within the wider continuum of health and disability support. However, informal caregiver resources are finite and therefore to optimise the productivity of this group, ways to support and value caregivers must be clearly identified. This research seeks to identify the factors that support or are detrimental to caregivers by focusing on caregiver quality of life, burden and depression. Methods: A mixed method approach was utilised to identify ways to support and enable caregivers to continue to provide care. The research was undertaken in two sequential phases; the first phase involved face-to-face interviews with five caregivers of people with disabilities and the second phase comprised a national self-completed online (SurveyMonkey®) survey (n=663). Interviews from the first phase were recorded, transcribed verbatim and analysed using a general inductive method of enquiry. Themes from the interviews informed the development of the survey, which was augmented by well-validated scales: Carer Reaction Assessment (CRA, Centre for Epidemiologic Studies Depression Scale-10 item version (CESD10) and The World Health Organization Quality of Life-Brief Instrument (WHOQoL-Bref). Survey data were analysed using a combination of univariate and multivariate ANOVA. Findings: Three distinct models were developed for each of the scales (WHOQoLBref, CRA and CESD10) using statistically significant variables identified through univariate analysis. Factors that were associated with WHOQoL-Bref, CRA and CESD10 respectively, were: (i) Caregiver QoL, p=<0.0001, p=0.002, p=<0.0001; (ii) Worry about finances, p=<0.0001, p=0.049, p=<0.0001; (iii) Reduced support, p=0.049; p=0.025; p=0.008. For both WHOQoL-Bref and CRA another shared significant variable was Caregiving support p=0.001, p=0.009 respectively. Results from the qualitative and quantitative phase were consistent with one another. Conclusions: This study offers insights into the challenges faced by New Zealand caregivers and offers recommendations to government and society on the types of investment required to build and sustain an unpaid carer workforce. This research contributes to the ongoing debate about providing informal care to those who need it.