Quality of Care after Ostomy Surgery: A Perspective Study of Patients
A stoma operation involves a major life change for the patient. Physical damage, disfigurement, loss of a bodily function, and a change in personal hygiene are cause for concern and make heavy demands on the provision of quality of care.1-3 In order to facilitate patient adaptation to new life with a stoma, detailed oral and written pre- and postoperative information that explains how to live with a stoma must be provided — eg, how to manage leisure activities, diet, the stoma appliance, and sexual activity.1-3
In many cases, seeing an ostomy appliance before the operation helps alleviate patient fears.4 Most importantly, clear communication and information and the ability to participate and be actively involved in the treatment are prerequisites for patient satisfaction with care.5,6 One study7 used open-ended interviews to evaluate how well nursing care met the needs of patients undergoing ostomy surgery. Patients perceived that physical, but not psychological, needs had been met. Another study8 showed that enterostomal therapists (ET) often believed they delivered the best possible ostomy care within the given time and financial constraints. This was evaluated by studying patient’s perceptions of quality of care. A subsequent study found that satisfied patients seemed more willing to follow professional advice and instructions.9
Quality of care is a multidimensional concept with various meanings. The definitions in the literature seem to focus on two major domains: 1) desirable characteristics of care, criteria, standards, and policy issues; and 2) evaluations of the outcome of care.10,11 Patients’ views on what is important in connection with the care they receive may be seen as one aspect of quality of care; patient satisfaction is increasingly used as an indicator of this quality.9,12,13 Patient satisfaction has been defined as the patients’ subjective evaluation of their cognitive and emotional reaction as a result of the interaction between their expectations regarding ideal nursing care and their perceptions of the actual nursing care.14
The purpose of this prospective, descriptive study was to examine ostomy patients’ perceptions of quality of care in terms of their evaluation of actual care conditions, as well as the subjective importance they ascribe to those conditions.
Subjects and procedure. The survey was carried out over 3 months in 1997 at nine small and middle-sized Swedish hospitals. Patients were eligible to participate if they had undergone surgery for the creation of a colostomy, ileostomy, or urostomy during the present hospitalization, were 16 years of age or older, communicative, able to understand Swedish, and willing to participate.
The ET nurse responsible for care provided oral and written information about the study to eligible patients after their surgery and obtained oral informed consent from them. The patients received the questionnaire and answered it anonymously in the hospital the day before discharge. The questionnaire was returned in a postage-paid envelope to a nurse at one of the hospitals.
The study was conducted according to the Ethical Guidelines of the Nordic Nurses Sciences Association.
Measures. Using a grounded-theory approach with a qualitative method of analysis, Wilde et al12 developed a theoretical model of quality of care from a patient perspective. The model stipulates that patients’ perceptions of what constitutes quality of care are formed by their encounter with an existing care structure and by their system of norms, expectations, and experiences. In this model, quality of care is understood in light of two conditions: the resource structure of the care organization and patient preferences. The resource structure of the care organization consists of person-related, as well as physical, administrative, and environmental qualities. The patient’s preferences have a rational and human aspect. Within this framework, patient’s perceptions of quality of care may be considered from four dimensions: the medical-technical competence of the caregivers, the degree of identity-orientation in the attitudes and actions of the caregivers, the physical-technical conditions of the care-organization, and the socio-cultural atmosphere of the care organization.
An instrument was developed from the theoretical model using a conventional factor-analytic approach: the Quality from the Patient’s Perspective (QPP) questionnaire. All items can be traced back to specific factors and dimensions of the model.15,16
Data on patients’ perceptions of the quality of care were collected using the QPP questionnaire modified to include stoma care.15 In addition to socio-demographic data, the adapted QPP questionnaire contained 49 items designed to measure the 17 QPP factors. These are described in relation to the model’s four dimensions and each factor is exemplified with one item. An additional 13 items were designed to assess ostomy-specific aspects of care. These items have shown face validity by patients and ET nurses. The different aspects in the instrument were seen as important by the patients in this study as well in earlier studies using the same instrument.17 Patient perception of medical-technical competence was assessed using 11 items representing the following two factors: physical caring (six items — eg, help available for toileting) and medical care (five items — eg, the best possible medical treatment as far as the patient can determine). Patient perception of physical-technical conditions was assessed using 10 items representing the following three factors: personal necessities (four items — eg, access to well-cooked tasty food); care equipment (three items — eg, access to technical aids such as wheelchairs and walking aids); and care-room characteristics (three items — eg, a comfortable bed). Patient perception of the identity-oriented approach was assessed by 18 items representing the following eight factors: being personal (three items — eg, feeling he/she was treated with respect by the ET nurse); interest in psychological situation (one item — the ET nurse was interested in his/her experiences, such as desires, needs, uplifts, concerns, and hassles); sympathy (one item — the ET nurse shows interest in the patient’s outlook on life); interest in the patient’s view-of life (one item — the perception the ET nurse showed interest in the patient’s spiritual needs); participation (three items — eg, the patient believes he/she can participate in decisions regarding his/her personal care); mental preparation (five items — eg, receiving satisfactory information regarding medications in order to understand their effects and how they should be administered); trust and understanding (two items — eg, the ET nurse truly understands the patient’s situation); and commitment (two items — eg, the ET nurse exhibits a sense of commitment and responsibility toward the patient).
Patient perception of socio-cultural atmosphere was assessed by 10 items representing the following four factors: secluded environment not directed by routines (five items — eg, patient desires and needs were not restricted by the organization, such as with regard to wake-up time); positive treatment of significant others (one item — patient family and friends are treated in a positive manner by the ET nurse); meaningful occupation (one item — access to a form of meaningful recreation during the day); and general atmosphere (three items — eg, a care situation that is efficiently organized and runs well) (see Table 1).
The respondent evaluated each item in two ways. The first measure was perceived quality of care, with each item related to the statement “I have…” (for instance, “I have the feeling that the ET nurse treats me with respect”). A 4-point response scale was used, ranging from 1 (“Do not agree at all”) to 4 (“Fully agree”), as well as “not applicable.” The second set of evaluations concerned the subjective importance the person ascribed to the various aspects of care. In this section, each sentence was related to the statement “This is how important it is for me to have…” (for instance, “This is how important it is for me to have the feeling that the ET nurse treats me with respect“). A 4-point response scale was used, ranging from 1 (“Of little importance”) to 4 (“Of very great importance”).
Statistical analysis. Factor scores were calculated by totalling the raw scores on the items representing the factor divided by the number of items in the scale. Thus, scores could range from 1-4 on factor scales. This procedure was done separately for the perceived reality and the subjective-importance scales. In the present study, Cronbach alphas for perceived reality factors ranged from 0.62 to 0.79 (except for one factor scale in the physical-technical dimension — personal necessities — where it was 0.39). For subjective-importance, Cronbach alphas ranged from 0.67 to 0.90. Cronbach’s alphas have varied across different investigations but tend to range between 0.70 to 0.90 on the factor scales and from 0.76 to 0.93 on the dimensional scales.18
All data were entered in a computer database and analyzed by using SPSS 10.1 (SPSS Inc. Chicago, IL). Data were reported using descriptive statistics.
Demographic data. During the study period, 105 patients had an operation resulting in an ostomy. Of these patients, 42 did not participate in the study: eight failed the language criteria, 20 were not able to participate due to their physical or mental health, four were not willing to participate, three died during the study period, and seven were missing at follow-up. The questionnaire was provided to the remaining 63 “consecutive” patients, of whom 49 replied (a 78% response rate); 25 were men, 20 were women, and four patients did not respond to the question about gender. Most patients were older than 65 years (n = 22) and retired. Eight patients were between 16 and 50 years of age and six were between 51 and 65 years. Information about age was missing from the questionnaires of three patients.
Assessment of the demographics of patients not participating showed no difference from the participating patients regarding age and sex. Of the 49 participants, 32 lived with their spouse. The most common self-reported diagnosis was cancer (n = 26); seven patients had ulcerative colitis; two had Crohn’s disease; and six had some other diagnosis. The diagnoses were unclear for four of the patients and four did not answer the question. Of the 40 patients answering the question about stoma type, an equal number (n = 19) had ileostomies and colostomies; two patients had a urostomy. The number of permanent and temporary ostomies was the same.
Quality of care. The factors “medical care,” “personal necessities,” “being personal,” and “physical caring” received the highest perceived reality scores; whereas, “interest in view-of-life,” “care-room characteristics,” and “participation” received the lowest scores. On the subjective importance questions, “medical care,” “physical caring,” and “care equipment” received highest scores ratings; “interest in view-of-life” and “care-room characteristics” scored lowest. Mean factor scores and standard deviations on the QPP factor scale are presented on Table 1.
On the stoma-specific portion, “where to get advice and support regarding the ostomy” received the highest perceived reality and subjective importance scores. “Satisfactory information regarding the stoma appliance” and “the possibility to practice handling my stoma in private” also received high perceived reality scores. “Satisfactory dialogue with ET nurse about sexual life together” received the lowest scores on perceived reality and subjective importance. Means and standard deviations on the stoma-specific items are presented in Table 2.
The majority of patients regarded most aspects of care as important and the perceived quality of care received was generally high. Medical care received a high perceived reality score, possibly because the patients had recently undergone an operation, often as a result of a serious diagnosis, most often cancer.
Items that measure care-room characteristics received low scores on perceived reality. One item in this factor concerns beds. Studies have shown that the beds available play an important part in medical treatment and therapy for patients in a surgery ward19 and that patients’ sleeping habits may change while they are hospitalized.7
“The caregiver’s interest in the patient’s view-of-life” received the lowest scores on both perceived reality and subjective-importance scales. Another Swedish quality-of-care study20 with elderly patients also observed low scores on these items, possibly because in Sweden, a highly secularized country, most people do not place high value on this psycho-social variable with regard to healthcare.
The factor “participation” also received a low score on the perceived reality scale; similar results have been found in other quality-of-care studies.17,21 The patient’s role has evolved from a passive to an active one and healthcare should, as much as possible, be provided in close collaboration with the patient, taking into account personal desires and needs. Patients have explained the importance of participating in discussions about their bodies. If decisions are left to the doctor, they want to be informed about what is happening and have the opportunity to voice their feelings.12,22 According to this study, patients’ expectations in this regard are not being met.
“Information from the ET nurses” received high scores on perceived reality. The highest score was obtained regarding “where to get advice and support concerning the stoma.” At each of the study hospitals, the ET nurse usually met the patients one or more days before the operation, and then again at the hospital after surgery to help and support them. Other studies of patient perception of quality of care have shown the importance of ET nurses in helping patients adapt to their new life situation.8,23-25
“The possibility to talk with the ET nurse about sexual life” received the lowest score on perceived reality. Problems often arise with sexual life after a stoma operation,26-28 making it important for patients to be able to voice their concerns.27,28 However, this factor also received a low score on subjective importance, perhaps because the questionnaire was completed at the hospital, soon after the operation. According to the literature, nurses often view sexuality as insignificant and not their responsibility to address. However, post-graduate training in counseling and communication in this subject has been shown to give the ET nurse more confidence to handle sexuality related issues appropriately.29 Caregivers need to be able to identify which patients need help and support in this area and need to be better able to handle questions about sexuality.
Although the study’s strength was the use of an internationally documented instrument to measure quality of care and internal consistency of most of the scales was acceptable, the Cronbach alpha was low on one of the perceived reality scales (‘personal necessities”). As the items designed to measure this factor deal with highly concrete issues, it could be assumed that the individual items are reliable, although the internal consistency of the aggregate factor score is weak.
It is also important to note that instruments like the QPP are only useful with patients who are able to communicate fully. Also, no data are available on the actual care provided; all observations are based on the patients’ perceptions.
Another limitation of the study is the small sample. The response rate was 78%, which is acceptable. Although the questionnaire was answered confidentially and returned by mail, patients may have felt dependent on their ET nurses; thus, they were reluctant to evaluate their performance. For that reason, an upward bias may be reflected in the scores received.
The items and factors in the QPP questionnaire seem to reflect patients’ point of view, since most received high scores on subjective importance. This was also true for the ostomy-related questions, which were tested for the first time in this study. Although a larger sample would be required, interesting and useful results might be derived through diagnosis-related analysis. It seems reasonable to assume that patients with severe illnesses and those in much need of care might rate care conditions as more important than patients with less serious problems.
Although the patients in this study were generally satisfied with the care they received, similar evaluations in other settings might help further improve ostomy care.
The authors acknowledge the following ET nurses from eight hospitals in Sweden administered, together with one of the authors of the questionnaire: Elisabeth Aveborn, Eva Bengtsson, Gisela Fridstedt, Elisabeth Hansson, Vibeke Kaufmann, Gunni Ohlsson, Christina Pettersson and Eva Törnblom-Andersson. Their assistance is gratefully acknowledged, as is financial support from Coloplast AB, which enabled the clinicians to meet.