Quality of life of ostomates at a teaching and referral hospital in Kenya

The purpose of an ostomy is to correct developmental anomalies, for decompression and lavage of the intestinal tract, stool diversion with obstruction and exteriorisation of the elimination passage, and also on a temporary basis to treat and reduce patients’ pain and discomfort related to disease. However, the creation of an ostomy alters a patient’s elimination patterns and can affect an individual both physically and psychologically.

Patients undergo ostomy surgery (colostomies, ileostomies and urostomies) for both permanent and temporary maintenance of gastrointestinal/urinary function. However, in Kenya, there is a general lack of knowledge about or experience of ostomy surgery and the implications of living with an ostomy among both patients and clinicians, an issue that is often observed during a patient’s hospitalisation. This lack of knowledge is compounded by the social stigma associated with ostomy care in most Kenyan communities.

There is limited documentation on quality of life (QoL) of ostomates in Kenya and equally little information on how ostomies affect patients’ QoL, as well as the interventions undertaken in public hospitals to improve ostomates’ QoL.

Following ostomy surgery, patients may experience severe distress (Sukhpal et al, 2012), with psychological consequences that include mood changes and an inability to relax and changes to their self-perceptions of their sexuality. Patients may also have fears about how the long-term effects of the disease may affect close family members in future (Dabirian et al, 2010).

There is therefore a need for a paradigm shift from the traditional emphasis on curing symptoms in ostomates to include approaches to maximise a patient’s overall QoL (Sinha et al, 2009).

A wound and ostomy care (WOC) nurse can support patients with both the physical gastrointestinal and nutritional aspects of living with an ostomy (Susanty and Rangki, 2016), and help them adjust to the psychological effects of living with a stoma, including adjusting to their altered sexuality. Body image changes can make it difficult for ostomates to discuss feelings surrounding their sexuality, but it is important to note that patients can still have a fulfilling sex life (Susanty and Rangki, 2016). The WOC nurse is well placed to support ostomates to adapt to changes in body image and sexual confidence (Black, 2004).

This study aimed to evaluate ostomates’ QoL with a focus on nutritional challenges, sexuality issues and the psychosocial effects of living with an ostomy, as well as to improve patients’ education about their stoma, and how psychological and social support could be enhanced.

Materials and methods

This was a descriptive study that employed an interviewer administered-questionnaire to gather information on QoL issues, including nutrition, psychosocial aspects and issues around sexuality. The researchers adapted the QoL of ostomates questionnaire developed at the City of Hope National Medical Centre in Duarte California, tailoring it to local needs. The tool is based on evidence-based research and comprises a total of 89 items. It is subdivided into a number of sections:

• Social demographic, 46 items
• Physical wellbeing, 11 items
• Psychological wellbeing, 13 items
• Social wellbeing, 12 items
• Spiritual wellbeing, 7 items.

The researchers selected the City of Hope tool because its validity and reliability has been proven with a range of international ostomate cohorts: Croatian, Persian, Iranian, Chinese and Malayalam ostomates (Grant et al, 2004; Gao et al, 2013; Anaraki et al, 2014; Mayadevi, 2019; Konjevoda et al, 2020). The tool was developed into a 47-item questionnaire to cover the areas of study in the Kenya context. Testing and modification of the tool was undertaken to ensure it was appropriate in the local context.

The authors identified potential participants among ostomates from the surgical wards, the surgical outpatient clinic, the oncology clinic and the palliative care clinic within their place of work, Moi Teaching and Referral Hospital (MTRH). The patients were informed of the study and invited to participate. Ostomates were also identified from the hospital health records and information system to reach out to patients who were not attending the clinics. Patients were recruited to the study while they were inpatients or attending one of the clinics, and the questionnaire was administered 6 months after discharge.

After making telephone contact, the researchers visited patients willing to take part in their home. All those who consented to participate signed a written consent form. No eligible ostomate with whom the researchers made contact rejected the invitation to take part. However, 15 ostomates for whom the researchers found telephone records had died as reported by relatives who responded to the call and in 32 cases the researchers were unable to establish contact.

Interviews were conducted by the three researchers. Ostomates who had agreed to take part were given an explanation of the study, following which a printed questionnaire was issued with a consent form attached. Those able to read and write signed the consent form, completed the questionnaire and handed it back during the encounter with the researcher. In the case of ostomates who were unable to read and write, the researcher read out the consent form and the questions to elicit and document their responses; after receiving an explanation of the study, these ostomates signed the consent form using an ink thumbprint before the questionnaire was then administered.

A total of 81 ostomates at various stages of adjustment, preparation for closure, as well as those with permanent ostomies participated. Patients were older than 14 years and attended the hospital between 2014 and 2019. The researchers found that there was variation in the duration of time that patients had had an ostomy. Ostomates were eligible to participate for 6 months following discharge home from hospital after ostomy creation. At MTRH they are discharged home after they have been educated and have practised ostomy self-care independently or, for those unable to manage on their own, with the assistance of a carer.

Analysis of the data collected was undertaken using the SPSSv20 statistical software package.

Ethical considerations

Approval was given by MTRH/Moi University Institutional Research and Ethics Committee, and permission was then granted by the MTRH chief executive officer for the researchers to conduct the study in the hospital.

Results

Patients were identified as residing in 19 of Kenya’s 47 counties. A total of 81 respondents participated, of whom (54%) were males and most respondents (25%) were aged between 35 and 44 years (Table 1).

Classification of ostomies

The proportion of patients with a colostomy was 69% (56/81), 30% (24/81) had an ileostomy and 1% (1/81) did not know the kind of ostomy they had (Table 2). By the end of the study, 26 (32%) of the patients had a permanent ostomy, 24 (30%) had a temporary ostomy—and were aware that it would be reversed at an appropriate time—and 30 (37%) had already successfully undergone reversal. The researchers were able to continue follow-up for inpatient admission and pre-operative management for those who had undergone a reversal procedure.

Diseases/conditions associated with ostomy creation

The ostomy creation surgery had been due to a range of diseases and conditions (Table 3). The highest numbers were for colorectal cancer (28/81), intestinal obstruction (22/81) and traumatic injury (13/81). Other causes included ovarian mass (2/81), Crohn’s disease (2/81) and adhesions after an operation (1/81).

Duration of ostomy

The majority of patients (21/81) had been ostomates for less than 6 months, with the next largest group having had an ostomy more than 48 months (15/81) as shown in Table 4.

Marital status

A common observation at MTRH is that a majority of nurses, and more so the younger ones, find it difficult to offer stoma care, including demonstrating the emptying of drainable pouches. Some wonder how young ostomates will cope with their spouses after discharge. However, according to Altschuler et al (2009), spouses are a source of positive psychosocial adjustment for ostomates. Further understanding of ostomates’ social history, including marital status, can enable the clinical team to better address ostomates’ potential psychosocial adjustment needs and improve their overall wellbeing. Marital status was therefore an area of study the researchers wanted to explore.

A paired t test was run for a sample of 80 patients, yielding the following results: mean for a patient’s marital status after surgery (1.99) and mean before surgery (1.88). The difference between the means was 0.113, so the mean after surgery was greater than before. The P value for marital status was 0.095, meaning that there was no statistically significant difference in the marital status of patients prior to and after surgery. Ostomy creation therefore had no impact on marital status.

Health insurance

The correlation between variables in health insurance and QoL showed a statistically significant relationship (R=-0.011; P=0.922). Patients whose medical cover paid for all their ostomy supplies had a better QoL because they were able to get regular and sufficient supplies compared with the QoL of those whose medical insurance did not cover their supplies or did not have any medical cover.

Sexuality and body image

Regarding the mean score for sexual activity, the question ‘Was/is your sexual activity satisfying with an ostomy’ showed statistical significance (P=0.002). This indicated that patients no longer felt that sexual relations with an ostomy were enjoyable. Despite this, and the fact that they did not feel sexually attractive, they resumed having sex (Table 5).

Psychological concerns

The study findings showed a correlation between the QoL of patients who had an ostomy and their psychological concerns. The majority felt depressed after having the procedure (P=0.003). Suicide attempts by patients following creation of an ostomy correlated negatively (−0.104) with QoL, indicating a higher risk that patients with a poor QoL after ostomy surgery will attempt to take their own life (Table 6).

Clothing

There was a significant relationship between QoL and how patients dressed after having the ostomy procedure (R=0.123; P=0.275). The findings indicated that all patients changed how they dressed afterwards, irrespective of where their device was positioned or whether they perceived QoL to be better or worse with an ostomy.

Diet

The correlation between questions relating to diet and QoL showed a weak relationship (R=0.065), which is statistically significant (P=0.564). This indicated that after having an ostomy, the patients changed/adjusted their diet regardless of whether they perceived QoL to be satisfactory/excellent or poor.

Overall quality of life

Cronbach’s alpha was set at 0.849 to check for the reliability and consistency of variables for QoL. The mean for the ten variables found to be reliable was 27.47, with SD=6.730. Overall, 84.9% of the variance score was found to be reliable, with error variance calculated at 15.1%.

The mean and standard deviation for the effects of all the variables examined on QoL are presented in Table 7. The study found that:

• About two-thirds of patients experienced fatigue when undertaking daily activities: 41% reported this was ‘sometimes’ and 22% ‘always’
• Most patients had interrupted sleep with a stoma in place, with 57% reporting that it ‘sometimes’ interrupted sleep and 28% that it ‘always’ interrupted sleep
• One-third (33%) of patients experienced difficulties with constipation (31% ‘sometimes’; 2% ‘always’), and 46% reported that this was rare
• Just under half of patients (49%) were embarrassed about having an ostomy, with one-fifth (20%) saying it did not affect them
• Almost half (46%) reported that they always experienced anxiety living with ostomy, with 23% reporting that they did not experience any anxiety
• A majority (58%) perceived that their ostomy always interfered with their social life, with just 14% reporting that it did not
• A vast majority reported that their friends and family provided sufficient support, with 40% responding that this was ‘always’ the case and 41% ‘sometimes’.

About one-fifth (22%) of participants rated their QoL as ‘excellent’, with 9% rating it ‘poor’. The largest group (38%) rated their QoL as ‘fair’, with just under one-third (31%) as ‘good’.

Discussion

The largest age group among ostomates was 35-44 years (25%), followed by those aged 55-65 years (17%). The mean age was 42 years, which is much lower than the mean of 55 years reported for an Iranian population of ostomates (Sarabi et al, 2017) and a little higher than an earlier Iranian study among a similar population that recorded that the average as 53 years±12.3 years (Anaraki, 2012). The average age for ostomates reported in Ireland is 61 years (Davidson, 2016) and 73 years in Australia (Ketterer et al, 2021).

In the present study, the most prevalent type of ostomy was the colostomy, recorded for 69% of participants. This finding is similar to that reported in other studies (Kwiatt and Kawata, 2013). A colostomy was the procedure reported by 59% of patients in a study by Krouse et al (2016) and 55% in a study reported by Jansen et al (2015). In the authors’ study reported in this article, the proportion of ileostomies was 30%, which is comparable with the figure of 31% in Jansen et al (2015).

The leading cause for ostomy creation was colorectal cancer, which affected 35% of participants. This was much lower than found by studies undertaken in other regions. In the USA, ostomies created due to rectal cancer stood at 60.5% (Krouse et al, 2016) and in the Netherlands 80% of patients (Jansen et al, 2015). Other leading causes for ostomy creation in MTRH were intestinal obstruction (27%), traumatic injury (16%), typhoid disease perforation (4%) and intestinal alcoholic mucosal damage or necrosis (4%) (Table 3).

The results of the study indicate the need to support patients to adjust to living with a stoma across all the parameters studied. This is comparable with the findings of Hu et al (2014), whose study found out that most patients (96.9%) achieved only low to moderate adjustment to normal life after having ostomies.

All patients reported needing to make adjustment to their diets after ostomy formation, due to a variety of gastrointestinal difficulties: 73% experienced flatulence (59% ‘sometimes’; 14% ‘always’), 33% constipation (31% ‘sometimes’; 2% ‘always’) and 32% diarrhoea (22% ‘sometimes’; 10% ‘always’). This is comparable with the numbers reported in other studies (Krouse et al, 2016; Vonk-Klassen et al, 2016).

The responses to our study showed that 72% of participants experienced anxiety (26% ‘sometimes’; 46% ‘always’) and 73% experienced depression (33% ‘sometimes’; 40% ‘always’) (Table 7). This is consistent with, although a little higher than, Shaffy et al’s (2014) finding that 53% of ostomy patients experienced severe stress. However, it is much higher than the finding of 20% of ostomates experiencing anxiety as reported in an Australian study (Knowles et al, 2013). Knowles et al (2013) added that 31% of those with Crohn’s disease experienced depression to an extent that psychological support and follow-up were required. Similarly, a study by Gautam and Poudel (2016) found that having an ostomy affected patients psychologically.

This study showed that 41% of ostomates experienced fatigue ‘sometimes’ and 22% ‘always’ in all their daily activities (Table 7). In addition, social interactions were always affected in the lives of 58% of ostomates, which is in line with the findings that social isolation is among the key effects of ostomies (Dabirian et al, 2010), with 26% reporting that having a stoma ‘sometimes’ interfered with their social life.

The results indicated that, despite resumption of sexual activity following ostomy creation, patients were not happy with their experience of sex (P=0.002). This is in line with the findings of other studies, that sexual relationship issues were key concerns for ostomates (Çakmak et al, 2010; Dabirian et al, 2010; Neuman et al, 2011; Jansen et al, 2015; Vonk-Klaassen et al, 2016).

Kiliç et al (2007) reported that ostomates have various ostomy-related disruptions in their day-to-day lives. Although the QoL of patients with ostomies attending MTRH resonates with ostomists’ experiences documented elsewhere, it was generally poorer than that reported in other studies. In the present study, 47% of ostomates had poor to fair overall QoL after ostomy creation, compared with 25% reported by Pringle and Swan (2001).

Ostomates with a medical insurance cover in the present study experienced a better QoL compared with those who did not have cover because they benefited with financial help towards managing their ostomies.

Implications of findings

Compared with the findings of studies undertaken in other countries—Iran (Anaraki et al, 2014; Sarabi et al, 2017), Ireland (Davidson, 2016) and Australia (Ketterer et al, 2021)—ostomates in the present study had a lower mean age, despite colorectal cancer being the leading cause for ostomy formation. The age distribution can be attributed to the corresponding lower life expectancy in developing countries.

The other main causes for ostomy creation in the present study were: intestinal obstruction (27%), traumatic injury (16%), typhoid disease perforation (4%) and intestinal alcoholic mucosal damage (4%). This was significant because:

• Intestinal obstruction is a surgical emergency that, if well managed and there are no complications, is not an indication for ostomy creation. However, poor infrastructure and limited healthcare provision at local health facilities in Kenya mean that more than 48 hours may pass before patients are referred and able to access surgical intervention. Consequently, ostomy creation is frequently necessary to improve outcomes, which would not necessary for similar cases in developed countries, with good infrastructure and efficient health systems
• Ostomy creation is often required to repair abdominal and pelvic organs following traumatic injury caused by an accident or violence against a person. Such injury may be due to road traffic accidents, domestic violence assaults, intertribal/clan violence and attacks by wild animals. Some of these events, such as attack by wild animals, are less likely in developed countries
• Poor sanitary conditions and lack of early identification and comprehensive treatment for typhoid fever may necessitate an ostomy
• Although rare, another indication is intestinal mucosal damage in our region, due to consumption and abuse of illicit alcoholic brews, which is associated with liver cirrhosis, pancreatitis and other adverse health effects including intestinal mucosal damage.

The researchers consider that the findings should to be explored further and on a larger scale, which will require further collaborative research. The findings have shown that ostomates in Kenya have low QoL, which is compounded by unaffordable ostomy supplies, fatigue, need for dietary adjustment, inability to resume and undertake daily activities and lifestyles, all of which can be more problematic than in developed countries. Ostomates report unfulfilling sexual relations, anxiety and depression. The study highlights that these are significant issues that must be tackled by healthcare leaders. To enable this, it is vital that the government allocate resources for ostomy care, a health area that deserves no less attention than diseases such as HIV, cancer, chronic and non-communicable diseases.

In view of the findings that having medical insurance cover has a positive effect on ostmates’ QoL, the Kenyan government must prioritise the implementation of its Universal Health Coverage agenda—and ensure a focus on ostomy care services, including the enrolment of the country’s ostomate patients into the National Hospital Insurance Fund.

Conclusion

Ostomates are experiencing low QoL. The identified effects can be alleviated by focusing on individualised ostomy care services for ostomates after discharge from hospital. This can be improved by enhancing stomatherapy trainings and initiation of ostomy clinics alongside other mainstream services in public hospitals, as well as support towards enrolment into the country’s National Hospital Insurance Fund.

KEY POINTS

• Colorectal cancer is the leading indication for surgery, leading to ostomy creation. Flatulence, constipation and diarrhoea are the most commonly reported gastrointestinal problems reported by ostomates
• Stoma supplies can be an issue and affect ostomates’ quality of life (QoL). In the case of patients in Kenya, those enrolled in the national health insurance scheme had a better QoL compared with those who were not
• Anxiety and depression were found to be common among ostomate and wound and ostomy nurses are well placed to support ostomates to adapt to living with a stoma

CPD reflective questions

• Reflect on how an ostomy can change a patient’s quality of life. Which key pre-operative aspects of ostomy care could be improved by your local ostomy and continence teams to support patients in adapting to living with a stoma?
• Consider the importance of providing patients with information. What information-giving would you improve, for example regarding diet, to ostomates on discharge from hospital?
• What are the most frequent concerns ostomates in your care raise in the immediate pre- and post-operative periods? How can you support them?