Continuation of caregiving among partners who give total care to spouses with multiple sclerosis.

Abstract

As is expressed in the term 'caregiving career', caregiving is a dynamic phenomenon. The present study addresses the total care phase in which spouses give direct and ongoing personal care to their partners with multiple sclerosis (MS). The dyadic nature of caregiving is stressed by examining the roles which both spouses play in establishing a commitment that results in the continuation of caregiving. For this purpose, 17 couples facing MS were selected in the Netherlands and Belgium. Ten females and seven males were disabled, and all were living with partners who provided a full range of care. Both partners were interviewed separately about their motivation to give care, dependency on help, the continuation of caregiving and their relationship. The analysis consisted of fragmenting and connecting the data, and involved close reading and constant comparison. The present findings support those previous studies, i.e. that continuation of caregiving is the result of an interchange between the partners. The commitment that is established can be expressed in terms of inevitability, shared misfortune, reciprocity and the desire to prevent admission to a nursing home. Three aspects appear to contribute to the creation of commitment and the ensuing continuation of caregiving: namely, marital loyalty, and the arbitrariness of the disease and its serious nature. For community care, it is important to consider the negotiations between partners and the impact of caregiving on their relationship.