A new life with a stoma and quality of care among patients and their partners

Information, education, and counselling are essential elements in stoma care. It istherefore important to take the necessary time to explain to patients and their partnerwhat to expect when living with a stoma.Aim: To describe the perception that patients and their spouses have of their lifesituation after stoma surgery, with particular emphasis regarding their personal viewson the importance of various aspects of care and how they felt about the quality ofcare that was provided.Methods: Nine patients were interviewed about their feelings and life experiences 6-12 weeks after stoma surgery. A qualitative method was used to collect and analysethe data. In addition to the interview procedure, quality of care of patients and theirrelatives was assessed using the identity-oriented dimension of the well-establishedquestionnaire Quality of Care from the Patients Perspective . A colostomy group of49 patients and 32 couples and an ileostomy group of 42 patients and 28 couplescompleted the questionnaire. Focus group interviews comprised of spouses to patientsafter surgery for rectal cancer were conducted as method of data collection.Qualitative content analysis was used to analyse the implicit meanings embeddedwithin the interview material.Results: The altered body image had an adverse impact on the sexual life of thepatients and their spouses. Social life and leisure activities were also affectedadversely and thus the couples had to adapt to their new live style accordingly. Thetopics covered by the questionnaire were considered important to both the patientsand their relatives. Information given on results from medical examinations andlaboratory tests was judged to be unsatisfactory in about one-half of the ileostomypatients and their relatives and in about one-third of the patients and their relatives inthe colostomy group. Furthermore, their dissatisfaction with the possibility ofparticipating in the decision-making process or to discuss sexual matters was evengreater. Although the majority of the patients in both study groups considered theattitudes of the ET nurse and the treatment they received as satisfactory, the relativeswere observed to be less content with these issues. Ileostomy patients and theirrelatives tended to be more displeased with the quality of care than the colostomypatients and their relatives.Conclusion: Despite access to stoma therapy and modern stoma appliances, anileostomy as well as a colostomy, were found to adversely affect the daily life ofpatients and their spouses and relatives. Concerning the quality of care, a largediscrepancy still exists between what form of care is offered and what is actuallygiven, particularly regarding patient participation and information needs. An attitudechange that is more accommodating and that encourages spouses and relatives totake part in consultations might serve to facilitate the ostomy patient s long-termadjustment to living with a stoma