Methods: Two groups of participants took part in the study: patients and one of their family members (the person whom the patient reported as the closest family member). Fifty-four matched patient-family member pairs from palliative care and advanced home care units in Sweden participated. During a five-month period in 2002, data was collected using a modified version of the Quality from the Patient's Perspective questionnaire (QPP). The modified QPP consisted of 21 items designed to measure two of the four quality-of-care dimensions: medical-technical competence (5 items, example: "I receive effective pain relief") and identity-oriented approach (16 items, example: "The personnel are respectful to me"). Each item was evaluated in two ways by the patients; 1) a measure of the perceived reality of the quality of care and 2) a measure of the subjective importance the patient ascribes to the various aspects of care. Family members evaluated each item on the same two dimensions from both their own perspective, and their perception of the patient's perspective. The QPP was sent out to all family members and the responsible nurse provided the patients with the QPP in their home. Patients and family members responded to the questionnaire independently.

Findings: In the context of an advanced home care setting, patients and their close family members appeared to similarly perceive the quality of care. This applied to the assessments of the medicaltechnical competence of the professional caregivers, as well as to the identity-orientation in their attitudes and actions. Regarding evaluation of the subjective importance ascribed to the different aspects of care, close family members overestimated the importance of medical-technical aspects when compared with the ratings given by the patients themselves. Patients and family members gave the identity-orientation of care almost identical importance ratings. On the items measuring the medicaltechnical competence of professional caregivers, family members who met the patient every day had significantly lower scores than those who met the patient once a week or less. There was also a difference on the items designed to map the identity-oriented approach of the professional caregivers, but in the opposite direction. Family members who met the patient every day had significantly higher scores than those who met the patient once a week or less.

Conclusion: Family members who see patients every day appear to be good proxies for patient's views on quality of care. This is not the case with family members who see the patient once a week or less. Family members' perception of the quality of care may be an important data source for the nurses in the case of home care if the patient and family member share the same everyday, care-related experiences. Otherwise, family members' perceptions tend to be more critical than those of patients'.

Reference: Larsson BW, Larsson G, Carslong SR. "Advanced Home Care: Patients' opinions on quality compared with those of family members", Journal of Clinical Nursing, 2004, 13: 226-233.

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