Colorectal cancer (CRC) remains one of the most common malignant tumours worldwide. In recent years, the incidence of CRC in Egypt has increased, with CRC now constituting 3.47% of male cancers and 3% of female cancers. It is expected that incidence and mortality rates will continue to rise in the near future due to the lack of screening, a higher proportion of advanced-stage cancer at the time of diagnosis, and the lack of specialised care outside of major cities (Ibrahim et al, 2014; Metwally et al, 2018).
A colostomy is the opening of the colon onto the abdominal wall. The stoma lacks any form of sphincter which controls flatus and faecal output in the anus. Therefore, the patient is rendered incontinent as they pass bowel contents into a bag without being able to control the timing. This can lead to odour and leakage, and physical discomfort may be of concern (Moya-Muñoz et al, 2019). As a result, colostomy patients often have a poor body image and low self-esteem, while also battling with cancer, and may suffer from fear of potential rejection by partners, family and friends. Colostomy and CRC surgery complications have been found to have a substantial and detrimental effect on health-related quality of life (HRQoL), which is a valuable indicator of outcomes for cancer patients (Turkmen and Ozbas, 2019; Miller and Peck, 2020).
HRQoL and resilience appraisals are important features of cancer care and are a predictor of the health status of patients, their adaptation to their illness, and preparations for future nursing interventions (Liu et al, 2017; Mosleh, 2018; de Oliveira et al, 2018). HRQoL can be defined as a subjective view of the essential elements of the life of a person and the person's opinion of their level of satisfaction and wellbeing. A stoma patient's HRQoL may be affected by positive factors, such as having a good knowledge of their illness, being able to deal with stressful circumstances and to self-care, and having affordable health care. It will also be affected by negative factors, such as the side effects of medication, disease development and loneliness (Zhang et al, 2019).
Resilience is described as the ability of people subjected to stressful events to sustain relatively safe and stable psychological and physical places, along with the ability to cope with new problems and obstacles and produce positive experiences despite these problems (Babanataj et al, 2019). The resilience of permanent colostomy patients is directly affected by their attitude, adaptability and QoL, which is affected by the disease and procedure (Temprado Albalat et al, 2020). Moreover, studies have demonstrated that people with high levels of resilience can see positive elements in the problems they face, experience fewer depressive episodes and have more positive feelings (Scardillo et al, 2016; Babanataj et al, 2019).
Nurses are important members of the healthcare team and have a significant role in caring for patients with a colostomy, in identifying the needs of patients and their families, limiting complications associated with a colostomy, and improving HRQoL. Nurses can use HRQoL and resilience assessments to plan, implement, and evaluate evidence-based care for patients with a permanent colostomy. An accurate and appropriate assessment of the patient's problems enables the nurse to implement care based on the best available evidence and enhance adaptability and coping behaviours (Dehvan et al, 2019).
Several researchers have examined HRQoL and resilience among colostomy patients, but there have been few studies about HRQoL and resilience among colostomy patients in middle income, developed countries, such as Egypt, hence the authors wanted to conduct the present study. As the community of surviving CRC patients rises, it is becoming increasingly important to understand and develop HRQoL and resilience in these patients. This research was therefore carried out to investigate the relationship between resilience and HRQoL in permanent colostomy patients.
Methods
Study design
This research used a descriptive correlational cross-sectional design.
Sample
A purposive sample of permanent colostomy patients with malignant disease, who had undergone surgery more than 3 months previously, were recruited. This period after surgery has proved to be a significant parameter for determining the HRQoL and resilience because it takes patients time to accept the changes that have occurred and to adjust to life with a stoma, and return to socialising and prior activities. The sample consisted of 158 colostomy patients.
Inclusion and exclusion criteria
Eligible adult patients were expected to have colon cancer, as shown in their medical reports following a doctor's diagnosis, be willing to enrol in the study, and be self-sufficient prior to surgery, with at least 3 months having elapsed since the surgery. Patients with a psychiatric illness, patients scheduled to undergo chemotherapy, those with metastases, and debilitated patients were excluded.
Setting of the study
This study was carried out in the province of Damietta, Egypt. The environment for the current research was a government hospital run by the Ministry of Health. Currently, the Damietta Oncology Institute is the only specialist tertiary hospital in the delta region. It offers treatment to more than half of the cancer patients in Egypt. Hence, this study was conducted at this hospital due to the increased possibility of identifying suitable patients to be included in the sample.
Research instruments
A set of questions regarding demographic and basic medical information variables (sex, age, marital status, and education level) was developed.
Instrument
For quantitative details, the City of Hope Quality of Life Ostomy (COH-QoL-Ostomy) questionnaire was used (Grant et al, 2004). It is multidimensional and consists of 43 elements that investigate the health status and quality of life associated with the health of patients with a colostomy. The four subscales are graded as physical (1–11), psychological (12–24), social (25–36), and spiritual (37-43). Each question is answered with a 0–10 ranking on a Likert scale where zero represents the lowest result and 10 the highest. These values were then used to determine separate subscale and total QoL scores.
Prior to data entry, the following items were reverse-coded to ensure accuracy of result: items 1–12, 15, 18–19, 22–30, 32–34, and 37. The standard ‘forward-backward’ procedure was applied to translate the questionnaire from English into Arabic by an official bilingual translator, who also did the back-translation into English. The back-translation was then compared with the original questionnaire and a reasonable match was found. A pilot test was subsequently carried out to evaluate the logical and perceptual concerns in the Arabic edition of the questionnaire. Ten patients were questioned about the questionnaire's complexity, any complicated terminology, and the likelihood of misunderstandings in each section. Cronbach's alpha was observed in this analysis to be 0.85. The questionnaire can be downloaded from the City of Hope website (City of Hope and Beckman Research Institute, 2022).
Resilience scale
The resilience scale, adapted from Wagnild and Young (1993), measures the ability to tolerate life stressors. It is a 25-item scale with a 7-point ranking (1–disagree; 7–agree). The scores range between 25 and 175. Based on the estimated standard distribution, 147 and higher values were seen as strong resilience values, 121 to 146 were deemed mid-range, and less than 121 were deemed low resilience values. Cronbach's alpha for the scale was 0.86.
Procedures
Patients were interviewed and completed the questionnaire at the surgical clinic when they came to obtain colostomy supplies during the postoperative period. The researchers administered the questionnaires used for analysis during face-to-face interviews that lasted 45–60 minutes, which took place at the Damietta Oncology Institute.
Researchers also measured the weight and height of each patient, and calculated their body mass index (BMI) (Dudek, 2017).
Ethical considerations
Written approval from the ethical committees of the hospital where the research was conducted was sought before gathering data. In addition, information on the study and the fact that participation was voluntary were communicated to patients and their oral consent was obtained. Patients who were enrolled in the study were informed that they were free to participate or not, without taking on the duties of a researcher and also assured that their care would not be affected whether they took part or not.
Statistical analysis
For the interpretation of the collected data, the SPSSv23.0 statistical package for Windows was used.
To define the sample characteristics in terms of demographics (age, marital status, sex) and other data from the study, descriptive statistics, including frequencies and percentages, were used. The correlation coefficient of Pearson (Pearson's r) was used to define relationships between each of the independent variables and the dependent variable (QoL). During statistical assessment, significance was evaluated as P<0.05.
Results
One hundred and fifty-eight colostomy patients took part in the study. Around half (50.6%) were female and the mean age was 58.20 years (standard deviation (SD)=8.70). The mean time after formation of stoma was 4.34 years. The majority were not working (90.0%). In addition, all participants were low-income earners (Table 1).
Table 1. Sociodemographic characteristics of study patients (n=158)
| Sociodemographic characteristics | n (%) |
|---|---|
| Age (mean ± SD) | 58.2±8.70 |
| Sex | |
| Male | 78 (49.4%) |
| Female | 80 (50.6%) |
| Marital status | |
| Married | 113 (71.5%) |
| Divorced | 28 (17.7%) |
| Widowed | 17 (10.8%) |
| Education | |
| Illiterate | 3 (1.9%) |
| Can read and write (basic skills) | 7 (4.4%) |
| Primary education | 26 (16.5%) |
| Preparatory education | 95 (60.1%) |
| Secondary education | 27 (17.1%) |
| BMI (mean ± SD) | 32.2 ± 5.7 |
| Time elapsed since formation of the stoma (years) | 4.34 ± 2.49 |
| Received any education about colostomy care* | |
| Yes | 85 |
| No | 15 |
HRQoL is a multidimensional term that incorporates and transcends the concept of wellbeing. It is made up of different realms, including physical, psychological, social and spiritual spheres. The mean (SD) HRQoL score of colostomy patients was 129.61±98. Among the various domains, the highest median score was 38 for the psychological domain (interquartile range: 26–54), followed by 32 for both the physical and social domains (interquartile ranges: 18–44 and 21–44, respectively). The lowest median score of 29 was obtained for the spiritual domain (interquartile range: 19–39) (Table 2).
Table 2. Quality of life domains in colostomy patients
| Health Related Quality of Life Scale (HRQoL) | Mean ± SD | Median | Minimum | Maximum |
|---|---|---|---|---|
| Physical domain | 31.30 ± 4.41 | 32 | 18 | 44 |
| Psychological domain | 38.14 ± 4.99 | 38 | 26 | 54 |
| Social domain | 31.35 ± 4.92 | 32 | 21 | 44 |
| Spiritual domain | 28.82 ± 3.07 | 29 | 19 | 39 |
| Total quality of life scale | 129.61 ± 98 | 130 | 109 | 148 |
SD=standard deviation; minimum=minimal value; maximum=maximal value
Table 3 demonstrates the relationship between resilience and HRQoL, where no significant differences were observed. However, the total resilience scale score showed a positive correlation with all aspects of HRQoL.
Table 3. Correlation between total resilience and HRQoL domain
| Physical | Psychological | Social | Spiritual | Total HRQoL | ||
|---|---|---|---|---|---|---|
| Total resilience scale(106.05± 8.09) | Pearson correlation | 0.019 | 0.022 | 0.011 | 0.080 | 0.039 |
| P value | 0.81 | 0.78 | 0.88 | 0.31 | 0.63 |
Discussion
The present study revealed that colostomy patients gave both their resilience and HRQoL low ratings against the scales used. Similar results were reported by Scardillo et al (2016) and Ratjen et al (2018), who found that colostomy-related complications had negative effects on HRQoL and resilience. However, the findings of the present study are inconsistent with those of Zhang et al (2019), who suggested that colostomy patients tended to be more resilient and self-reliant with the passage of time. Colostomy resilience is a complex mechanism in which a person seeks to cope with problems linked to colostomy, alleviate negatives, and maintain influence over their lives. Colostomy patients need time to adapt and manage colostomy-related complications (Turkmen and Ozbas, 2019). Ito et al (2010) reported no correlation between the timing of colostomy formation, improved HRQoL, the acceptance of change and resilience.
The lower resilience and HRQoL lower ratings given by the patient population surveyed in this study (mean age 58.20 years) were in contrast to the findings of Zhang et al (2019), who concluded that increasing age had a protective effect. This is because older patients had feelings of increased subjective wellbeing and perceived their physical status differently to younger individuals. In a study by Xu et al (2018), younger colostomy patients (aged under 55 years) were found to have lower HRQoL scores, especially in the psychological domain.
The findings of the present study are consistent with those of Dehvan et al (2019), who reported that the display of resilient behaviours to overcome life restrictions and an ability to adapt were related to improved HRQoL in patients with a permanent colostomy. These findings indicate that patients who have high levels of resilience more frequently engage in health-promoting behaviours and have a greater ability to adapt successfully to their health challenges compared with individuals who report lower levels of resilience (Liu et al, 2017).
Spiritual wellbeing helps colostomy patients to accept change and choose a healthy and productive lifestyle, which can improve HRQoL and resilience (Zare et al, 2019). Despite the importance of spiritual wellbeing, the present study revealed that scores in the spiritual domain were the lowest in relation to other HRQoL domains. Several studies have found that a feeling of comfort resulting from a perceived relationship with a higher power was more strongly associated with a better HRQoL (Repić et al, 2018; Dehvan et al, 2019; Zare et al, 2019). However, some researchers have suggested that a colostomy negatively impacts certain religious practices due to perceptions of ‘uncleanliness’ when engaging in certain faith-based activities, and some patients with a permanent colostomy may experience difficulties in conducting their religious worship (Bulkley et al, 2013; Cavdar et al, 2013; Repić et al, 2018).
The results of the present study showed that the colostomy patients had lower scores for resilience and poor HRQoL scores in the physical domain due to loss of bowel function control (Reinwalds et al, 2018). This result can be interpreted as the consequence of colostomy care and the attendant limitations on daily living activities. In addition, individuals with a colostomy experience unforeseen defecation timings owing to the absence of an internal/external sphincter, and a resultant lack of sensations. This may have a negative effect on patients' QoL and resilience (Moya-Muñoz et al, 2019; Zhang et al, 2019).
Therefore, nurses and colostomy patients should develop a plan of care with attainable goals, assess the appropriateness of routine colostomy irrigation as a method to improve management, and strive to re-establish a sense of normality following colostomy surgery and reduce the negative effects of having a stoma on HRQoL. Stoma care nursing education and training should include preparing nurses to problem solve, address issues of immediate concern, and offer opportunities to practise new skills for colostomy care, to improve the overall quality of life of colostomy patients. Many authors argue that it is essential to educate colostomy patients in the proper management of their bodies so that they become autonomous in caring for themselves and can adapt successfully to their altered health status (Xu et al, 2018; Moya-Muñoz et al, 2019; Miller and Peck, 2020).
The findings of the present study show that many of the patients were obese and experienced leakage. Although the leakage was due mainly to insufficient skills related to the care of their colostomy and improper selection of stoma flange, it was also linked to difficulties in adherence related to obesity. In Ratjen et al's study (2018), it was found that colostomy patients with a lower BMI had a higher HRQoL.
The present research shows that colostomy patients in this study had received health education about colostomy care despite their poor HRQoL and resilience. It is important to acknowledge that providing patients with education and information alone does not necessarily mean that knowledge is retained. Several factors can affect the relationship between patients' knowledge, resilience and HRQoL (Andersson and Nordgren, 2019). In turn, education and information alone do not necessarily suggest the existence of improved HRQoL and greater resilience. Factors such as the patient's experiences and their view of their body, as well as resilience when problems occur, are likely to affect the relationship between the patient's knowledge and HRQoL (El Sayed et al, 2018). The voices of patients are often unheard in studies and more research looking at the issues from a patient's point of view is needed.
Colostomy patients face a daunting condition that impacts their lives, and health services provide a first line of assistance and knowledge related to colostomy. If patients have the information they need to maximise their HRQoL and cope with their condition, their adherence with recommended colostomy care and willingness to problem solve will improve.
The present study found that ratings for colostomy patients in the psychological domain were comparatively higher than in other HRQoL domains, which indicates the ability of colostomy patients to tolerate their bowel symptoms: this is because they see a colostomy as ‘the cost of survival’, an ‘incentive to be around despite pain’, and a way to ‘continue to cope despite difficulties’. Several reports have shown that having an altered body image is a good indicator that a patient may experience fear, depression and discomfort, and eventual anxiety and distress. It can be argued that resilience training can increase people's level of ability to accept changes to their body image (Tao et al, 2014a; Repić et al, 2018; Sharour et al, 2020).
In the present study, the low scores in the social domain were linked to decreased social activities among colostomy patients due to concerns about incontinence while awake or sleeping, odour and peristomal skin problems. These factors are often associated with negative feelings and can lead to social isolation (Sharour et al, 2020). In Arab culture, treatment of sick family members is deemed a spiritual responsibility, but the colostomy patients in this study did not rely on this support, even if it was offered, and felt that they should take charge of their own colostomies (Konstantinidis et al, 2016). Patients reported that they felt it was unfair to let someone else empty and change the stoma equipment since dealing with excrement is unpleasant. The results of the current research indicate that more primary care support for stoma patients is needed.
A study performed by Mosleh (2018) concluded that the amount of social care for cancer patients declined as the time after surgery increased. Medical and nursing support is a form of social support which entails the sharing of information. Although Egypt has limited medical resources, the government provides free appliances for ostomy patients. Low income and financial difficulty are important issues that negatively impact patients' HRQoL and adaptation to life with a stoma. It is therefore important for nurses to consider this by ensuring that patients choose appropriate ostomy supplies with regard to their economic status, while bearing in mind that peristomal skin protection is the priority of ostomy product selection. In addition, there are small palliative care units, structured support groups, home-care nursing networks, and social support in Egypt. Colostomy patients are most likely to need physical and mental health care to treat problems arising from living with a colostomy (Tao et al, 2014b). Moreover, effective therapies are often limited to hospitalised patients and yet the majority of discharged patients still require nursing care for their lifelong colostomy.
Implications for practice
This study indicates that nurses have a responsibility to provide information, advice, counselling and assessment of HRQoL, which can help patients cope with their colostomies. Nurses can also organise and conduct support groups for colostomy patients, where they can share their experiences and coping strategies to help improve self-reliance and QoL. Moreover, continuous support by nurses and enrolment into support groups for colostomy patients is necessary for the prevention and management of patients' negative reactions towards their stoma and improvement in their QoL. Therefore, multidisciplinary intervention programmes, based on empirical facts and containing information and procedures, need to be designed to promote resilience and offer preventive steps against potential complications. This would make it easier for patients to react more positively to their condition and boost HRQoL.
Conclusion
The results of the present study indicate that there was a positive correlation between each aspect of HRQoL and resilience. Therefore, the assessment of HRQoL and resilience in colostomy patients is important because it provides nurses with a reference to facilitate decision-making regarding patient care. The present study revealed that patients with a colostomy had low resilience and HRQoL scores, which probably suggests that colostomy patients allow the loss of bowel function to control their lives. Multidisciplinary, research-based intervention programmes containing information and protocols need to be designed to promote resilience, along with measures to prevent potential complications and increase HRQoL.
KEY POINTS
- The findings of this study, which focused on colostomy patients' health-related quality of life and resilience in a hospital in Egypt, provide nurses with a reference to facilitate decision-making with regard to patient care
- Patients with a colostomy often allow the loss of bowel function to control their lives
- Patients commented that having a colostomy was the price they had to pay for survival and that they continued to cope despite the challenges living with a stoma brings
- Appropriate assessment of patients with a permanent colostomy enables the nurse to implement care based on the best available evidence and enhance the patient's adaptability and coping behaviours
CPD reflective questions
- In your practice, consider which factors may be related to patients reporting lower resilience and poor health-related quality of life (HRQoL) when living with a stoma
- Reflect on what the stoma care nurse can do to improve stoma patients' resilience and HRQoL
- Participants in the present study had low scores in the spiritual domain. Think about how you could discuss with patients how a stoma affects spiritual aspects of their life and help them to adapt to life with a permanent stoma