Using mixed methods to assess how cancer patients' needs in relation to their relatives are met in the Danish health care system: a report from the population-based study "The Cancer Patient's World"

The aims of this paper were to validate four items assessing how patients' needs regarding support to and from their relatives are met and to investigate patients' evaluation of this support. Items were validated by patient-observer agreement and cognitive interviews. Adequacy of support was assessed in a cross-sectional study of 1,490 Danish cancer patients; 147 of these also answered an open-ended question. All items performed well in the validation. Only 4 % reported lack of support from their relatives, whereas 9 and 11 % had lacked support from the health care professionals regarding how to tell the relatives about the disease and regarding the relatives in general, respectively. Although the patients' expectations are not unequivocal, a large proportion (35 %) reported that the health care professionals had shown little interest in how the relatives were doing. This was most pronounced for female patients and patients sampled in urban areas. Compared to older patients, younger patients lacked more support with respect to the relatives in general and regarding how to tell them about the disease. Divorced patients were less satisfied than married patients on all measures. While most patients felt well-supported by their relatives, the oldest, the divorced, and those without children may be a vulnerable group. Many patients reported that the health care staff showed insufficient interest in the well-being of the relatives. Thus, it may be beneficial for both the patient and the relatives if health care professionals acknowledge and support the relatives in fulfilling their important role as caregiver and companion.