TY - JOUR
T1 - Using mixed methods to assess how cancer patients' needs in relation to their relatives are met in the Danish health care system
T2 - a report from the population-based study "The Cancer Patient's World"
AU - Ross, Lone
AU - Petersen, Morten Aagaard
AU - Johnsen, Anna Thit
AU - Lundstrøm, Louise Hyldborg
AU - Lund, Line
AU - Grønvold, Mogens
PY - 2012/12
Y1 - 2012/12
N2 - Aim 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. Method 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. Results 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. Conclusion 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 wellbeing 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.
AB - Aim 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. Method 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. Results 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. Conclusion 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 wellbeing 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.
U2 - 10.1007/s00520-012-1466-z
DO - 10.1007/s00520-012-1466-z
M3 - Journal article
C2 - 22531878
SN - 0941-4355
VL - 20
SP - 3211
EP - 3220
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 12
ER -
