When Time is Not on Your Side: Patient Experiences with Waiting for Home Care and Admission to a Nursing or Residential Home

Background: Waiting for care is common in many countries as a result of supply-side rationing. The effects that waiting has on patients and their environment have not received much attention thus far. We discuss the literature and present the results of a study on patient experiences with waiting for home care or admission to a nursing or residential home. Methods: Late in 2003 we recruited people on a waiting list in the Waardenland and Midden-Holland regions in the Netherlands to participate in a survey. People were randomly selected from waiting lists for home care or admission to a nursing or residential home. A structured questionnaire was administered to either the patient or their proxy. Respondents answered questions about socioeconomic status, health, well-being, intermittent care use, care providers, and additional costs associated with waiting. Furthermore, the survey included questions addressing waiting (time) perceptions Health status, well-being (or happiness), and different measures of the burden of waiting were assessed using a visual analog scale (VAS). Finally, respondents were asked to evaluate five statements regarding changes in health status and feelings of uncertainty, dependence, stress, and autonomy as a result of waiting for care, using a Likert-type scale (four categories ranging from `totally agree' to `totally disagree'). Data were analyzed using SPSS (version 12.0.1). Differences in means between people waiting for home care and admission were tested using one-way ANOVA; differences in proportions were tested using the Chi-squared test. Multivariate analysis was conducted to explore associations of the burden of waiting with background variables and characteristics of intermittent care received, using a forward conditional regression model. Results: We found that waiting for care may have far-reaching consequences for patients and their families, and that approximately half of the patients waiting for care considered their current waiting time to be unacceptable. However, the mean burden of waiting is moderate and associated with the extent to which shortages in care are supplemented by support from informal caregivers, volunteers, or a domestic help. Conclusions: Differences in how waiting time is perceived between individuals and care sectors are helpful building blocks for the development of more tailor-made policies aimed at reducing the burden of waiting time. These policies include additional support or quicker access to support at home for those most in need, and setting waiting time guarantees in order to reduce uncertainty.