Quality of Care and Quality of Life from the Perspective of Patients and Parents

Although easily used the concept of quality is rather complex, ambiguous, and difficult to measure. Consequently, this applies to the concepts of ‘quality of care’ and ‘quality of life’, being constructs which as such are difficult to determine and to measure. Although it is supposed that the first contributes to the second, they are often considered as ‘opponents’ rather than ‘friends’. ‘Quality of care’ refers to the process as well as to the results of care related to specific goals for a specific type of care as judged by the groups involved. Daily functioning and the appraisal of someone's health or well-being are integral parts of the ‘quality of life'. An often neglected standpoint concerning quality of care is that of the group of patients, their parents or partners which contributes to the opposing characteristics of both concepts. In case of a chronic condition, they will make use of professional help and care for a long period of time, affecting their quality of life. Therefore, insight into their standpoint concerning the quality of the care delivered to them is urgently needed. In this article both concepts and their possible relationship will be discussed and illustrated with some examples derived from a research among adult patients with epilepsy, all members of the Dutch Patient Organization and from two researches among parents of a child with epilepsy. From these studies it appears that a) the quality of care provided is often judged as unsatisfactory, that b) the quality of care as experienced by parents may help them in handling their child with epilepsy, and finally, that c) it influences the behaviour of the child via parental child rearing practices. It may be concluded that in this sense, the quality of care provided is not always as optimal as it should be and that it affects the quality of life of parents and child.