A Study to Identify the Level of Knowledge and Self Care Performance of the Colostomy

A STUDY TO IDENTIFY THE LEVEL OF KNOWLEDGE AND SELF CARE PERFORMANCE OF THE COLOSTOMY PATIENTS AND ITS EFFECTS ON THEIR QUALITY OF LIFE.

Hanan Gaber**, Aida El-Gamil* *Lecturer in medical-surgical nursing department Alexandria university **Lecturer in medical-surgical nursing department Banha University. ABSTRACT

The impact of a stoma on a patients life is little discussed and is often underestimated, as well as the contribution of stoma therapy to health-related quality of life colostomy patients were dissatisfied with the information they received about the colostomy care, complications and lifestyle changes. Information and counseling for those patients appeared to be deficient and require continuous evaluation and revision. The study was carried out to determine the level of knowledge and self-care performance of the colostomy patients and its effect on their quality of life. The study was conducted in out patients unit at Institution of oncology and Gastro enterology Surgery Department at Messratta, Lypia. The study comprised 50 adult patients who performed colostomy and ileostomy within 3-6 months from the beginning of the operation. The study findings revealed that only half (54%) of subjects were trained about stoma care and 60% of them received oral instruction by doctors. As regards self-care performance the highest mean scores were obtained in performing irrigation and removal of old pouch, moreover a high significant difference was found between the patient’s knowledge about self-care performance and the majority of quality 2. of life domains. The study recommended that colostomy patients assessment of self care performance, knowledge and quality of life is needed, so specialist ostomy care nurses is particularly important during the first 3 to 6 months following surgery to improve patient’s quality of life.

INTRODUCTION

Physical illness is a multifaceted phenomenon that includes biological, psychological, social, environmental, familial, psychosocial and psychosexual factors. It is an existential crises involving issues of identity and daily life.(1) Stoma patients have a surgically created opening on the abdomen involving parts of the gastrointestinal tract. Colostomy involves discharging feces from the large intestine through the surgical opening. Due to this major change in physical appearance and bodily function, patients with stoma are challenged with a number of quality of life (QOL) issues.(2)

Various studies have shown that, the colostomy patients were facing many problems after colostomy operation due to lack of knowledge, preoperative preparation and post operative management. So, those patients were suffering from direct and indirect complications. It may be related to stoma itself as stenosis prolapsed, retraction, stomal necrosis, laceration, bleeding and parastomal hernia.(3) Furthermore the bowel alteration as diarrhea, constipation, impaction of stool and/or excessive gases consider source of problems for ostomy patients. As well as skin irritation, irrigation of colostomy and application of pouching system correctly, problems of 3. leakage and/or presence of bad odour.(4) Additionally, the presence of stoma itself considered as a big problem which affects the body image of those patients and create a psychological problems.

As regard the deprivation of normal control and alteration in physical appearance can have profound psychological impact. The fear of offending others because of the malodorous secretions and physical disfigurement can make ostomates avoid family and friends.(3) The coping with new lifestyle need to compliance with new patterns of behavior requiring a life long process of self care. Self-care for stomates is considered the most important factor that minimizes the complains and complications rate as well as providing good health state.(5)

Previous studies have ensured that patients with a colostomy have a poorer quality of life, and found that a stoma operation causes profound changes in a patients life because of resulting physical damage disfigurement, loss of bodily function, change in personal hygiene restrictions in their level of social functioning and sexual functioning impairment. Such changes are a cause of major concern for patients and raise important issue for quality of care.(6,7)

Moreover, quality of life is an important issue for patients with stomas. They have undergone mutilating surgery that can cause permanent change in body image and affect quality of life. Most patients who receive stoma surgery have colorectal cancer, therefore, they have to cope with having cancer as well as the impact of extensive surgery, both can 4. significantly influence quality of life. Enterstomal therapists help such patients come to terms with their situation and help care for them throughout their life with a stoma.(8,9)

Clients will experience emotional and psychological changes after ostomy surgery, when instruction is provided to clients and their families effectively, it promotes understanding, instills confidence and increases clients ability to manage indepently.(9)

In a study conducted to assess the quality of care in colostomy patients seen from a patients perspective, it was found that vast majority of colostomy patients, rated many aspects of their quality of care as unsatisfactory and they were dissatisfied with the information they received about the colostomy care, complications and lifestyle changes.(10)

Another study done by turns, revealed that information and counseling for patients having ostomies, both on the part of specialist nurses and colorectal surgeons, appeared to be deficient, suggesting that standards for quality of care require continuous evaluation and revision.(11)

Naget confirmed that colostomy has a profoundly negative impact on QOL. Specialized counseling of these patients by a dedicated team improves QOL significantly.(12)

An instrument of measurement in the clinical setting, QOL is defined functionally by patient’s own perceptions of their performance in physical, occupational, psychological, social, financial, and somatic areas.(4,5) 5.

Nurses caring for individuals with colostomy have an important role to play in relation to information provision and reassurance. This nursing role in the management of patients with colostomy has become increasingly significant within healthcare provision due to increased incidence and prevalence of this condition. It is important that the nurse understands the impact that colostomy can have upon an individual. quality of life.(9) Thus the aim of the present work was to identify the colostomy patient's knowledge and self care performance and its effect on patient's qualify of life.

Aim of The Study

 The aim of this study are: 1- To determine the level of knowledge and self care performance of the colostomy patients. 2- Assess effect of patient’s knowledge and self care performance on their quality of life.

Materials and Methods

Design

Descriptive research.

Setting

This study was conducted in outpatients unit at Institution of Oncology and Gastroenterology Surgery Department at Messratta, Lypia. 6.

Subjects

This study comprise 50 adult patients from both sex who performed colostomy and ileostomy within 3-6 months from the beginning of the operation and willing to participate were included in the study. All patients with chronic illness (cardiac diseases, diabetes and renal disease) were excluded from the study.

Four tools were included in this study as follows:

Tool I. A questions to assess knowledge of ostomy patientss consists of two parts

Part 1: It include the personal characteristics of the patients, type and causes for ostomy, pre and post operative teaching and training was taken.

Part 2: Questions to assess the patient’s knowledge. It stresses the definition of colostomy, causes of colostomy, anatomy and physiology, types of ostomy, complication of ostomy types of pouch and appliance for stoma as well as questions related to self care. A three point likert scale of responses was used such as No Understand=0, understand the Basic=1, Good Understand=2, and Excellent Understand=3.

The total score of the questionnaire was 36 marks: (It comprised 13 sub items) - Definition of ostomy. (3) 7.

- Causes of ostomy. (3) - Anatomy and physiology. (3) - Complication of ostomy. (3) - Complications of mucus membrane. (3) - Abnormal skin condition. (3) - Types of pouch and appliance for stoma and (3) - Self care information (5 items). (15)

Tool II. Self care performance checklist of ostomy patients

It was developed to assess the performance of ostomy self care. It includes preparation of the pouch, removal of the old pouch, clean stoma and skin around the stoma, apply the pouch, empty the pouch, clean pouch and stoma irrigation. Each step of the performance was rated from 0-3 [not done =0, weak performance =1, acceptable performance =2, and Good performance =3].

The total score of the self care performance was 93 designed as follow: - Preparation of the pouch. (6) - Removal of the old pouch. (12) - Clean stoma and skin around the stoma. (15) - Apply the pouch. (12) - Empty the pouch. (12) - Clean pouch. (9) - Stoma irrigation (27) 8.

Tool III. Quality of Life Index Instrument (QLII)

This instrument was adopted from Montreux Study.(13) It consisted of

33 items in the quality of life related questions were pooled into seven domains: psychological wellbeing, physical well being, body image, pain, sexual activity, nutrition, and social Concerns. Additional questions measuring patient satisfaction and confidence were pooled into others domains. The questionnaire can be divided into three main sections: quality of life (consisting of 22 items in 7 domains).

- Satisfaction (consisting of 6 items in 3 domains).

- Self efficacy (consisting of 5 items in 2 domains).

Each questions is answered on a 6 point rating scale with end points

(from 0 to 5) labeled with opposite extreme responses (such as “none” at all versus a great deal” “extremely poor” versus “ excellent” and the like).

Experts in jury changed these score to be measured on a 6-point scale ranging from never =0, often =1, sometimes =2, occasionally =3, frequently =4 and always =5. Also, the item of improvement integrated into the area of patient’s satisfaction. Score 0 was allocated to the items response choice never, indicating greater impact of quality of life. Some items response choice always, indicating greater impact. The total score of this instrument was 165. 9.

Tool IV. Stoma assessment sheet

It is used to assess the general condition of the stoma, skin and mucose membrane as an indicators of the patient’s knowledge and self care performance.

Methods

- Permission from Hospital directors was obtained to conduct the study. - A structure questionnaire and observational checklist performance were developed by the researchers based on the review of current related literature(9) to assess the patient’s knowledge and self care performance. - Content validity of the tools (I,II, III) was done through jury of 10 experts in this field. The recommended changes were carried out and the tool (III) was adapted according the culture and translated into Arabic. - Test-retest of reliability for too II was done by the researcher, cronbach's alpha =0.80. Test- retest of reliability for tool III was done by Marquis(13) cronback's alpha = 0.92. - A pilot study was carried out on 10 patients selected randomly to ensure the clarity of the questionnaire (I, II, III). Modification were done based on the findings. - Data were collected from the patients by individual interviews in the outpatients using the developed questionnaire (tool I,III) and observational checklist (tool II) as well as assessment sheet (tool IV). Each interview took a time of about one hour. The data were collected in 6 months, from January until June 2007. 10.

Statistical analysis

The EPI INFO statistical program was utilized for data presentation and statistical analysis of the results and correlation between variables. The statistical measures used were: a. descriptive measures included were number, percentage, arithmetic mean, standard deviation, b. statistical tests used were t. test. The level of significance selected was P equal to or less 0.05.

RESULTS

Table (1): Shows distribution of the studied sample according to the colostomy patient’s characteristics. As regards sex two thirds (64%) of the studied sample were females, the majority 70% of the studied sample, their age were more than 40-55 years. Very few of patients were divorced, single and widow (2%, 4%, 8%) respectively, the rest of the sample were married. Regarding the socio-economic status more than half of the studied sample (52%) were moderate. Concerning educational level the majority of the studied sample were illetrate or read and write (34%, 28%) respectively. More than two third of the studied sample (68%) were not working.

Table (2): Shows distribution of colostomy patient’s concerning types of stoma and causes of colostomy, around three quarter (74%) of the studied sample were had permanent colostomy, while 48% were due to cancer colon.

Table (3): Illustrates the colostomy patient’s concerning the previous teaching and training received, around two third (62%) of the studied sample were received teaching about types of stoma and defecation process while only 10% received teaching about types of clothes needed. Around half (45%, 11.

50%) respectively, of the studied sample were trained about How put empty pouch and remove dirty one, and clean the skin and stoma care. However 60% of the studied sample were received teaching orally by Doctors, while 20% of patients did not received any instruction.

Table (4): Illustrates the total mean scores and standard deviation of colostomy patient’s knowledge as regard colostomy. It was observed that the highest mean score which patients obtained were in the following area: definition of colostomy, types of pouch, and causes of colostomy (1.70 ± . 544, 1.70 ± .462, and 1.54 ± .645) respectively.

Table (5): Illustrates the total mean scores and standard deviation of the colostomy patient’s knowledge as regard their self care. It can be seen that the highest mean score which patients obtained were in the following items: Types of clothes should wear, precaution should followed during food intake and prescribed food (1.45 ± .760, 1.50 ± .646, 1.48 ± .708) respectively.

Table (6): Presents the total mean score of the colostomy patient’s performance as regard their self care for the skin and stoma care. It ws observed that the highest mean score (10.34, 7.68) respectively were in performing irrigation of stoma and removal of old pouch while the lower mean score (3.46, 5.62) respectively were in performing preparation of equipment and application of pouch and fixation.

Table (7): Shows the total mean score of the colostomy patients regarding their quality of life, satisfaction and self efficacy. As regards the quality of life the patients stated that they were physically and 12. psychologically wellbeing, with the highest mean score (10.30 ± 2.53, 8.82 ± 2.38) respectively while the lowest mean score were obtained in relation to their sexual activity (1 ± 1.04). Regarding the patient’s satisfaction the study revealed that the patients were satisfied for medical care provided with the highest mean score (11.54 ± 2.92), on the other hand the patients mentioned that the medical care provider had a lack of experience with colostomy patient’s problems with the lower mean score 3.34 ± 823, concerning the self efficacy the patient perceived themselves as self efficient with the highest mean score (8.68 ± 2.26), while they were obtained lowest mean score (2.42 ± .78) regarding getting help or instructions.

Table (8): Shows the relation between the colostomy patient’s knowledge and their quality of life, satisfaction and self efficacy. This table illustrates a highly significant difference between the patient’s knowledge about self care performance and the following domains in quality of life (psychological well being, physical well being, body image, pain, sexual activity and nutrition concerns), in addition to patient’s satisfaction, self efficacy and teaching, (P = .000 for each and .012 for sexual activity) followed by high significant difference between the patient’s knowledge about definition of colostomy and all domains of quality of life and self efficacy except sexual activity (P = .032, .003, .002, .000, .025, .001, .001, . 013) respectively. It was observed that complication of mucus membrane of the stoma significantly affect the quality of life of the following domain, body image, pain, sexual activity, nutritional status, social activity and self efficacy. As regards the significant relation between patient’s knowledge and 13. their quality of life, satisfaction and self efficacy, it could be ranked as follows: self care performance, definition of colostomy, complications of mucus membrane, (complication of stoma and abnormal skin condition), types of pouch, anatomical and physiological bases finally causes of colostomy, Also the study revealed that there were not significant difference between patient’s knowledge about causes of colostomy and quality of life.

Table (9): shows the relation between the colostomy patient’s self care performance and their quality of life, satisfaction and self efficacy, this table revealed that there were a high significant difference between patient’s self care performance regarding removal of pouch and irrigation of stoma and quality of life, patient’s satisfaction and self efficacy (P ranged from 0.000, 0.03, 0.003 and 0.05). Moreover a high significant difference were found between self care performance regarding clean skin and stoma and quality of life, patient’s satisfaction and self efficacy (P=.00 in each) except the experience of medical care provider. As regards the significant relation between self care performance and patient’s quality of life, satisfaction, and self efficacy, it could be ranked as follows, remove old pouch and irrigate stoma, clean skin and stoma, clean and dry pouch and apply pouch and fixation, empty pouch, and equipment preparation.

DISCUSSION

An ostomy may be the best and safest form of treatment for number of conditions such as cancer of colon and rectum, trauma, obstruction of the bowel, complications of diverticulosis, and Grohn’s disease.(14) Patients with stomas face many difficulties both physical and psychological. Little is known 14. about the long term problems and the impact on patient lifestyle of a permanent stoma.(15) Stoma patient quality of life, knowledge and self care performance can be assessed, as they changes over the time, and that patient access to specialist ostomy care nurses is particularly important during the first 3 to 6 months following surgery.(16) Quality of life is an important issue for patients with stomas, both knowledge and self care performance can significantly influence it.(15) The present study showed that two thirds of patients received only oral instructions about the types of stoma and defecation process, How put empty pouch and remove dirty one and clean the skin and stoma care, it could be related to lack of stoma nurse intervention and absence of such specialty. In agreement with Oueda study(17) found that non of colostomy patients received any written instruction, while secord C.(18) Stated that adjusting to the life with an ostomy requires education and support during all phases of a patient’s episode of care.

The findings of the present study showed that colostomy patient’s knowledge were acquired only in the following areas: definition of colostomy, types of pouch and causes of colostomy, which reflects the low level of knowledge among colostomy patients. Doughtily,(19) reinforces the importance of teaching basic stoma pouching principles, to enhance the client’s sense of control over the situation.

Regarding patient’s knowledge about self care the patient’s were acquired knowledge related to types of clothes they should wear, precaution should followed during food intake and skin and stoma care. 15.

The study revealed that the majority of patients were performing irrigation of stoma and remove old pouch but they did not prepare the equipment and apply the new pouch. Because the patient mainly depend on one of his family members. Secord C.(18) Stated that managing stomas and their output can be challenging, but patient with stomas need knowledge base of their function and effect. Thorough teaching helping client to master pouch procedure. Moreover, Oueda mentioned that after six months of training and follow up, the colostomy patients were success fully independent related to assemble all material needed, remove the old pouch and put it in disposable bag, clean the stoma and dry it gently, prepare the pouch and empty it correctly and irrigate the stoma.(17)

Furthermore, the finding of the present study found that patients perceived themselves as physically and psychologically well being and self efficient but the sexual activity was affected. Also the patients mentioned that they were satisfied with medical care provided. In consistent with the finding of the present study Sprangers M.(15) found that many patients cope extremely well with a stoma, however, some patients experience some change in lifestyle and considerable difficulty and distress. Improved assessment and counseling with longer follow-up by the stoma department would be helpful in the management of these patients and probably would contribute to improvement in the quality of their lives. Another study found that one third of colostomy patients were dissatisfied with the information they received.(10) 16.

The study showed a significant relation between patient’s knowledge about self care performance and the following domains in the quality of life (psychological well being, physical wellbeing, body image, pain, sexual activity and nutrition concerns, in addition to patient’s satisfaction, self efficacy and teaching), also it was found that patient’s knowledge related to definition of colostomy and complication of mucus membrane of stoma had a significant relation with the majority of quality of life domains. It means that when the patients knowledge increased about stoma it had its effects of patients psychological, physical and social well being and his satisfaction and self efficacy it might be related to patients more understanding to his condition.

In congruent with this findings Karadag A.(20) confirm that colostomy has a profoundly negative impact on quality of life. Specialized counseling of these patients by a dedicated team improves quality of life significantly.

The study revealed that there were a significant relation between self care performance regarding removal of pouch and irrigation of stoma and quality of life, patient’s satisfaction and self efficacy.

The ability to perform self care reflects the individual’s power of agency. To engage in self care activities, the individual must have the ability and skills to initiate and sustain self care efforts. Moreover, knowledge and understanding of care practices and their relation to health and disease are needy.(21) 17.

CONCLUSION

The present study suggest that colostomy patient’s quality of life, knowledge and self care performance can be assessed, as they changes over the time, so specialist ostomy care nurses is particularly important during the first 3 to 6 months following surgery to identify potential concerns that can be addressed to help improve overall quality of life.

RECOMMENDATIONS

Results of this study calls for the following recommendations:

- Colostomy patients should receive adequate education, simulation and counseling regarding ostomy self care, lifestyle changes and self efficacy. - Assessment of patients, self care performance, knowledge and quality of life during first six months after operation considered as evidence to his educational needs and concern. - Training program for nurses to be well prepared to provide instructions and training for colostomy patients. 18.

Table (1): Personal characteristics of the colostomy patients.

Variables No. % Sex Male 18 36.0 Female 32 64.0 Age From 25-40 15 30.0 More than 40-55 35 70.0 Marital status Married 43 86.0 Widow 4 8.0 Single 2 4.0 Divorced 1 2.0 Socio-economic Low 14 28.0 Moderate 26 52.0 High 10 20.0 Level of education Illiterate 17 34.0 Read and write 14 28.0 Primary 8 6.0 Preparatory 3 6.0 Secondary 8 16.0 Occupation No work 34 68.0 Employer 8 16.0 Teacher 4 8.0 Worker 4 8.0 19.

Table (2): Distribution of colostomy patient’s concerning types of stoma and causes of colostomy

Variables No. % Types of stoma Permanent colostomy 37 74.0 Temporary colostomy 13 26.0 Causes of colostomy Cancer colon 24 48.0 Cancer colon and rectum 12 24.0 Ulcerative colitis 8 16 Trauma 6 12.0 20.

Table (3): Distribution of colostomy patient’s concerning types of stoma and causes of colostomy

Variables No. % Previous teaching - Types of stoma and defecation 31 62.0 process - Types of diet 6 12.0 - Types of cloths 5 10.0 - Non 8 16.0 Previous training - How put empty pouch and remove 27 54.0 dirty one - Skin and stoma care 25 50 - Clean the pouch 13 26 - Non 10 20 Sources - Doctors 30 60.0 - Nurses 10 20.0 - Not received 10 20.0 Teaching aids - Pouch sample 10 10 - Orally 30 60.0 - non 10 20.0 21.

Table (4): Total mean score of the colostomy patients ‘knowledge as regard colostomy

Total number =50 Variables Total score Mean SD - Definition of colostomy 3 1.70 ±0.544 - Causes of colostomy 3 1.54 ±0.645 - Anatomical and physiological bases 3 0.720 ±0.783 - Complication of stoma 3 1.34 ±0.688 - Complication of mucuse membrane 3 0.660 ±0.557 - Abnormal skin condition 3 1.12 ±0.593 - Types of pouch 3 1.70 ±0.462 - Total mean score 21 8.78 ±3.49

Table (5): Total mean score of the colostomy patients’ knowledge as regard their self care

Total number =50 Variables Total score Mean SD Types of clothes should wear 3 1.540 ±0.760 Types of skin application 3 1.32 ±0.745 Prescribed food 3 1.48 ±0.708 Amount of fluids intake daily and why? 3 1.040 ±0.781 Precaution should follow during food intake? 3 1.50 ±0.646 Total mean score 15 6.880 ±2.42

Total mean score for patient’s knowledge (Table 4 and 5) = 36 . 22.

Table (6): Total mean score of the colostomy patients’ knowledge as regard their self care for the skin and stoma care

Total number =50 Variables Total score Mean SD - Equipment preparation 6 3.46 ±1.15 - Remove old pouch 12 7.68 ±2.04 - Clean skin and stoma 15 7.62 ±2.62 - Apply pouch and fixation 12 5.62 ±1.59 - Empty pouch 12 7.50 ±1.15 - Clean and dry pouch 9 6.36 ±1.69 - Irrigate stoma 27 10.34 ±2.94 Total mean score 93 42.965 ±13.18

Table (7): Total mean score of the colostomy patients’ regarding their quality of life, statisfaction and self efficacy.

Total number =50 Variables Total score Mean SD Quality of life (110) (47.8) (±14.51) - Psychological wellbeing 25 8.82 ±2.38 - Physical wellbeing 25 10.30 ±2.53 - Body image 20 8.44 ±2.70 - Pain 10 6.00 ±1.86 - Sexual activity 5 1.00 ±1.04 - Nutrition 15 7.46 ±2.24 - Social concern 10 5.78 ±1.76 Patient’s statisfaction (30) (14.88) (±3.743) - Patient’s statisfaction for medical care 25 11.54 ±2.92 - Experience 5 3.34 ±0.823 Self efficacy (25) (11.1) (±3.04) - Self efficacy 20 8.68 ±2.26 - Help and instruction 5 2.42 ±0.78 Total mean score 165 73.78 ±21.293 23.

Table (8) 24.

Table (9) 25.

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