Advanced home care: patients' opinions on quality compared with those of family members

Background. Advanced medical care in the patient's home setting is becoming more common. Many of the patients who receive this kind of care have severe illnesses and are unable to respond to questions about the quality of care. The research question was: are the patients' opinions congruent with those of family members? Aim: To explore and compare the relationship between patients' perception of the quality of care and close family members' perception of this care as well as their perception of the patients' perception. Methods. Sixty-seven patients receiving advanced home care, 82 family members (54 matched patient + family member pairs) participated. Data were collected using a short version of the quality from the patient's perspective questionnaire modified to advanced home care. Results. A high degree of perceptual congruence was found between patients and their family members. The similarity was also high between family members' own opinion and their appraisal of how the patient perceived the care. A subgroup of family members who met the patient once a week or less often deviated from this pattern. Conclusion. Patients' views on the quality of care are congruent with the opinions of family members if they meet every day (live together) and share the same everyday and care-related experiences. The results can be understood in the light of empathic accuracy theory. Relevance to clinical practice. The findings of this study have important implications for clinical nursing practice. Family members' perception of the quality of care may be a valuable data source for nurses in the case of advanced home care if the patient and family member share the same everyday, care-related experiences, otherwise family members' perception tend to be more critical than those of the patients themselves.