Current methods in economic evaluations of informal care are mainly concerned with outcome costs, such as loss of caregivers' leisure time, reduction of labour force participation, and physical or emotional strains. Aspects of the caregiving process are often not addressed in such analyses and thus, were examined in this study and incorporated into a carer experience scale. The Carer Experience Scale developed in this study can be used by homecare providers, decision makers, and policy leaders as a performance indicator to evaluate the experience of unpaid carers in the home setting, relative to that of carers in other settings.

Background: To develop a simple tool useful for economic evaluations of the caregiving process, the authors reviewed previously published qualitative studies and used semi-structured interviews with unpaid caregivers to compile key attributes of the caring experience. As the focus shifts towards caregiving in the home and community settings, there is an incentive to understand both the outcome and the process of informal care. Current methods used in the economic evaluation of informal care are concerned with outcome costs, such as loss of caregivers' leisure time, reduction in labour force participation, and physical or emotional strains. However, aspects of the caregiving process are often not addressed in these evaluations due to a lack of appropriate tools for assessing these experiences.

Methods: Based on six qualitative studies, from Australia, the UK and the US, key attributes of the caring experience were identified and grouped into three categories: descriptors of caring, outcomes of caring and other aspects of the caring process. Concepts related to aspects of the caregiving process were then used as a guide in semi-structured interviews to evaluate their importance in understanding the caregiving process. Sixteen interviews were conducted between 2006 and 2007, primarily with unpaid carers of older individuals.

Findings: Six attributes of the caring experience comprise the final measure; (1) Activities outside caring (limited outside activities was often experienced as a result of providing care). (2) Social support (practical and emotional support from family, friends and support groups were highly valued). (3) Assistance from organizations and the government. (4) Fulfillment from caring (many carers experience positive feelings from caring, such as being appreciated, gaining new skills and contributing to the care of a loved one). (5) Control over caring (carers prefer involvement in decisions regarding the quality of care received). (6) Getting along with the person you care for (ability to communicate and avoid arguments was highly valued).

Conclusions: The Carer Experience Scale can be used by home care providers, decision makers and policy leaders as a performance indicator to evaluate the welfare of unpaid caregivers in their jurisdictions relative to others and to identify areas to improve the caring experience. This measurement tool is comprised of one item for each of six attributes of the caregiving process. According to the authors, the Carer Experience Scale provides a more direct assessment of unpaid carers' welfare and is suitable for use in economic evaluations, since aspects of the caring process - such as getting assistance from outside organizations, taking a key role in decision-making about the recipient's care, and feelings of fulfillment from caring for a loved one - are often not included in economic evaluations. Understanding aspects of the caring process will allow policy analysts to more accurately estimate the impact of informal care on caregivers' quality of life.

Comments

Be the first to comment on this!