Self- Care Knowledge and Practice for Patients with Permanent Stoma and their Effect on Their Quality of Life and Self Care Efficacy

Background: Quality of life (QOL) and self-care efficacy especially for patients with permanent stoma are importance. Addressing knowledge and self-care practice and their relationship with QOL is needed especially for patients in different age groups. This would serve as a base for developing a culturally competent educational intervention for these specific population. The aim of present study was to assess the level of knowledge and selfcare practice for patients with permanent stoma and its effect on their QOL and self-care efficacy. Methods: A descriptive correlational cross-sectional design was utilized to collect data from Clinical Oncology and Nuclear Medicine Department and its relevant outpatient's clinic of Tanta Main University Hospital and Outpatient's Clinic of General Surgical of Emergency Hospital at Tanta University . A convenience sampling of 140 adults and adolescents’ patients with permanent stoma were interviewed. The study questionnaire included a self-reported checklist that include sociodemographic data, knowledge of stoma and stoma self-care practice that was developed by the researchers. A modified version of the Stoma Quality of Life Scale (SQOL) and Stoma self - Efficacy Scale were also utilized. Results: Majority of the adolescents were males, singles and in age group 16 to 21. The main cause of stoma among adolescents was cancer, 90% had the operation within 6 months and 57% reported having difficulty with self-care. Regarding adults, 67% were in age group 31 to 60, 50% were married males, 47% were university graduates with a majority were working. Causes of stoma were mainly abdominal trauma, 46% were smokers, 57% had the operation within 6 months and 43% reported having difficulty with self-care. Two thirds of adolescents and 41% of adults reported fair level of knowledge of stoma definition, causes, types, complication and risks. More than half of the adolescents reported fair knowledge and more than one third reported good knowledge regarding stoma pouch, appliance for stoma, criteria of changing pouch of stoma. Fifty-eight percent of the adults reported good knowledge and 27% reported fair knowledge regarding same item. 64% of the adolescents and 50% of adults reported fair knowledge of diet, fluids and activity. Knowledge of self-care practice was presented as fair among 50% of the adolescents and 43% of adults. Meanwhile, good level of knowledge was reported among 52.9% of adults and 28.6% of adolescents for the same item. Total QOL and all subscales except for sexual aspect were reported as fair with statistically significant association between both groups. Self-care efficacy was negative among majority adolescents and positive among most of the adults. Conclusion and recommendations: The current study provided an evidence of unsatisfactory level of knowledge and self-care practice among adolescents and adults patients with permanent stoma. Quality of life and self-efficacy were also alarming. There is a need for culturally competent intervention with larger sample and qualitative methods of research to deeply explain this area. important to deliver individualized and appropriate care that improve QOL and enhance self-efficacy among patients with colostomy. The current study displays the actual needs of these type of patients, further educational studies are needed with larger and randomly selected samples. The need for qualitative approach to further and deeply explain the lived experience of patients with permanent stoma is important to uncover factors that is hard to be explained in a quantitative method.


Introduction
Stoma is a surgical procedure to divert the physiological way of elimination through a temporary or permanent opening (Racella et al. 2013;Bartle. et al., 2013). Stoma takes its name according to its location. Intestinal stoma classified as colostomy and ileostomy, and urostomy for diversion of the urinary stream (Sasaki et al., 2012). Stoma is performed for management of bowel dysfunction due to various causes that are not limited to cancer (Carlson et al., 2010;Marquis, et al., 2003). Many other causes include acute diverticulitis, trauma or injury, imperforate anus, partial or complete intestinal blockage, inflammatory bowel disease which manifest during childhood or adolescence for about 20-25% of patients (Mohamed, et al., 2018;Taylor et al., 2012). Inflammatory bowel disease is the most common causes of the creation of stoma especially in adolescents (Grant et al., 2004). The American Cancer Society, 2017 reported that colorectal cancer is the third common cancer type and became the second cause of death worldwide (American Cancer Society, 2017). The number of patients performed stoma surgery is increasing with about one million people living in North America with permanent stoma, and more than 120,000 new stomas are performed each year (Putri, et al., 2018). According to the National Cancer Institute in Egypt, approximately 650,000 adults in Egypt currently have a stoma and about 3000 new surgeries are performed each year with colostomy (El Sayed et al., 2018). Also, approximately 2400 adolescent had undergone colostomy More than half of the adolescents reported fair knowledge and more than one third reported good knowledge regarding stoma pouch, appliance for stoma, criteria of changing pouch of stoma portrayed. Fifty-eight percent of the adults reported good knowledge and 27% reported fair knowledge regarding this item. 64% of the adolescents and 50% of adults reported fair knowledge of diet, fluids and activity. In this regard, 18% of adolescents and 41% of adults reported good knowledge. Knowledge of self-care practice was presented as fair among 50% of the adolescents and 43% among adults. While good level of knowledge was reported among 52.9% of adults and 28.6% of adolescents for this item.
Chi square test of association showed that there is no statistical significance association between adolescents and adults regarding knowledge of definition, causes, types, complications and risks of stoma (Χ 2 = 1.67, p = .79). No statistical significance association between adolescents and adults regarding knowledge of stoma & stoma pouch, appliance for stoma, criteria of changing pouch of stoma (Χ 2 = .681, p = .95). In addition, there was no statistical significance association between adolescents and adults regarding knowledge of diet, fluids and activity (Χ 2 = 2.95, p = .56), and knowledge of self-care practice (X 2 = 1.652, p = .49). Self-care practice of stoma: Table 3 display that two thirds of the adolescents reported satisfactory level of practice regarding stoma self-care practice (pouch change and peristomal skin care) while one third reported unsatisfactory level regarding the same item. In addition, 71% of the adolescents reported unsatisfactory level of practice regarding stoma irrigation and hygienic care. Adults on the other hand showed a satisfactory level of self-care practice of stoma as 81.4% reported satisfactory level of practice regarding stoma care (pouch change and peristomal skin care) and 67% reported satisfactory level of practice of stoma irrigation and hygienic care Chi square was also performed to test the association between adolescents and adults regarding stoma selfcare practice. Results displayed that there were no statistical significance association between adolescents and adults regarding self-care practice of stoma care (pouch change and peristomal skin care), X 2 = 3.616, p = .46 while there were statistical significance association between adolescents and adults regarding self-care practice of stoma irrigation and hygienic care, X 2 = 3.269, p = .03. Regarding stoma self-efficacy, 88.6% of adolescents showed negative self-efficacy and 11.4% showed positive self-efficacy. In the same context, 93% of adults reported positive self-efficacy while 7% reported negative stoma self-efficacy.
Results of quality of life, self-efficacy and association between adolescents and adults are presented in table 4. 88.6% 93% 7% Independent sample t-test was conducted to text if there is a relationship between demographic variables such as age, gender, marital status, education and the study variables; knowledge of stoma, knowledge of stoma selfcare practice, self-efficacy and QOL. Results showed that age, knowledge of selfcare practice and self-efficacy reported significance association with QOL as presented in table 5.

Discussion
The current study aimed at assessing the level of knowledge of stoma and stoma self-care practice and their relationship to self-care efficacy and QOL among adolescents and adults with permanent stoma. High percentage of adolescents and considerable percentage of adults reported fair and poor level of knowledge in all the knowledge questionnaire items. These variations did not provide statistical significance differences among the 2 groups. This result was supported by previous works of Kumer (2016;Ran, et al, 2016;Cheng et al. 2013). The possible reasons for lack of knowledge among participants in this study would be due to their demographic characteristics. One quarter of both groups were illiterate, and majority did not receive any training for the stoma that would have raised their awareness. Adults reported a pit higher level at some aspects of knowledge than adolescents. This variation would be because of the majority of the adults were university graduates who are working in professional work. Such factors would contributed to variations of level of knowledge. Stoma self-care practice was satisfactory among adults and unsatisfactory among adolescents especially for stoma irrigation. This piece of result was supported by Cheng et al (2013;Parker, 2012). Adults in our study were well educated, have professional jobs, have established their families and can manage their care independently. Adolescents are more likely to be dependent on someone else in their families to care of them. That is supported by the fact that majority of adolescents in this study reported not having difficulty with self-care.
Adolescents reported fair total QOL and all the subscales while considerable percentage of adults reported levels of good and fair of total QOL and all subscales. There were statistically significant association between adolescents and adults regarding all QOL subscales except for sexual aspect which could be due to cultural issues. In addition, age knowledge and self-efficacy reported association with QOL. Adults and those with positive selfefficacy showed better QOL. Self-efficacy is the learned ability to perform self-care and is influenced by many factors such as knowledge and readiness. This was congruent with many previous researches who indicated that self-efficacy is a predictor of psychological and physiological wellbeing among patients with stoma. (Mohamed et al., 2017;Culha, & Bolluk, 2016, Pandey & Dhungana, 2013. Kit-Man et al., 2007Lai & Kin, 2014).
Adolescents and adults in this study reported fair and good satisfaction with sexual QOL and there was no statistical association between them. This was not consistence with Liao & Qin (2016;Neuman, et al., 2011) who reported that sexual activity was a concern for their sample. Participants from this study either adolescents or adults had their stoma initiated with 6 months. At this stage of recovery, the focus is more on adaptation to the stoma as a huge change in their life and body rather than sexual activity that might be obvious later. Stoma related concerns also would be different for cultural reasons.

Conclusion and Recommendations:
The current study provided an evidence of unsatisfactory level of knowledge and self-care practice among adolescents and adults patients with permanent stoma. This in turn affected QOL and self-efficacy among this kind of patients. To provide a holistic care for such patients, assessment of all aspects related to stoma are important to deliver individualized and appropriate care that improve QOL and enhance self-efficacy among patients with colostomy. The current study displays the actual needs of these type of patients, further educational studies are needed with larger and randomly selected samples. The need for qualitative approach to further and deeply explain the lived experience of patients with permanent stoma is important to uncover factors that is hard to be explained in a quantitative method.