Information to the relatives of people with ostomies: is it satisfactory and adequate?

The aim of this study was to evaluate how relatives of patients with an ostomy rated the various aspects of care, how they perceived the quality of the care provided, and how they ranked their involvement in the care. Patients' satisfaction was also sought, particularly their perception of relatives' involvement.

Descriptive cross-sectional.

The study comprised a colostomy group (32 pairs) and an ileostomy group (28 pairs). All patients attended a stoma outpatient clinic.

Quality of care was assessed using the identity-oriented dimension of the validated questionnaire Qualityof Care from the Patient's Perspective. Questionnaires were mailed to patients and their relatives.

Relatives and patients in both study groups considered most topics covered by the questionnaire to be important. Half of the patients with an ileostomy and their relatives and approximately 30% of those in the colostomy group were dissatisfied with the information they received, however. Moreover, a greater proportion (41-89%) of the patients were unhappy with the opportunities they were offered to participate in the decision-making process. Patients with an ileostomy and their relatives tended to be more dissatisfied with the quality of care than the colostomy group, but the difference was not statistically significant.

The topics covered by the questionnaire were considered important to both patients and their relatives. Information and counseling offered by the ET nurses and the colorectal surgeons were judged to be unsatisfactory, indicating the need for frequently assessing and improving general standards of quality of care.