Participatory control in chronic hospital-based hemodialysis patients

The purpose of this study was to determine chronic hospital-based hemodialysis patients' perceptions of control over selected aspects of hemodialysis care and to compare the patients' ratings with the global ratings of nurses caring for them. Two versions of a 14-item Hemodialysis Control Questionnaire (HCQ) were developed, one for patients (HCQ-P) and one for nurses (HCQ-N). Forty-seven patients and 32 nurses rated both perceived and desired control for each aspect of hemodialysis care on the HCQ. Reasons for their ratings were elicited and recorded. High test-retest reliability was established for both perceived and desired control on the HCQ-P and the desired control component of the HCQ-N. Patients rated their overall perceived and desired control as moderate, likewise the nurses' global score for desired control was rated as moderate. Item-by-item analysis revealed that nurses overestimated the patients' desired control over technical aspects of care but underestimated the patients' desire for more control over nontechnical aspects of care. The content analysis of the verbatim responses supported the quantitative findings.