Abstract
The presence of an ostomy causes numerous alterations in the lives of individuals with ostomy. There is limited information on the experiences of persons with ostomy in Nigeria. This study aimed to explore the lived experiences and the coping strategies utilized by individuals with ostomy. A mixed method of qualitative and quantitative design was adopted. Using Johnson Behavioral Model, a semi structured interview guide was utilized to elicit responses on the experiences of participants while living with an ostomy. The Brief COPE inventory was employed to identify coping strategies utilized by ostomates. Consecutive sampling method was used to select participants for this study and data saturation was reached at 15 participants. Qualitative data was analyzed using thematic content analysis while descriptive statistics was used to analysed quantitative data. Socio-demographic profile of the participants showed that 33.3% were within the age of 45–55 years and majority (60%) had a colostomy. Also, 66.6% of the participants had a temporary ostomy. Findings from this study revealed that on the first sighting the stoma, ostomates experienced feelings of sadness, shame and disgust. A good number (10 of 15) of the participants had the support of family and friends which aided their adaptation process. Just less than half of the participants had difficulty carrying on with work as the presence of the stoma reduced their ability to work effectively. The study provided evidence that Johnson Behavioural Model is useful in assessing the effect of ostomy in the lives of patients and also gave insight into the coping strategies used by them. The information generated from this study will be useful in creating a more holistictic approach in pre- and post-operative management of individuals with ostomy thus improving their health quality of life.
Keywords: Ostomy, Quality of life, Colostomy, Ileostomy, Nursing, Adaptation
Ostomy; Quality of life; Colostomy; Ileostomy; Nursing; Adaptation.
1. Introduction
A stoma is an artificial surgical opening between organs such as the intestine or bladder and the external environment for feeding, drainage and elimination (Pearson et al., 2020). There are various types of ostomies, however the most common are colostomy, ileostomy and urostomy. Based on the origin and complication of the disease, an ostomy may be temporary or permanent (Sena, 2018). The presence of a stoma requires individuals to depend on an ostomy pouching system for collection of feces or urine. An ostomy is constructed; due to malignant or benign reasons, congenital anomalies such as anorectal malformations, inflammatory bowel diseases, intestinal blockage and internal injury (Silva et al., 2019). The incidence of colorectal cancer (CRC) in Nigeria is 3.4/100,000, a good number of these patients end up needing an ostomy (Irabor et al., 2010). In a South Western State in Nigeria, colorectal cancer was the most common indication for stoma creation (Osinowo et al., 2018).
The purpose of an ostomy is to divert body waste via a surgically created opening on the abdomen, unfortunately, studies have shown that the presence of a stoma greatly affects the lives of individuals causing them stress and discomfort in major areas of their lives thereby reducing their health-related quality of life (Sena, 2018; Campos et al., 2017; El-Tawil and Nightingale, 2013). The existence and functioning of a stoma are affiliated with dramatic changes in the patient's life that may affect the physical, social, emotional and mental health. Ostomates experience psychological challenges such as depression, anxiety, body image changes, low self-esteem, sexual problems, denial, loneliness, hopelessness and stigmatization (Ayaz-Alkaya, 2019; Sena, 2018; Salomé et al., 2014).
Postoperatively, ostomates are faced with new challenges and have to develop coping strategies to deal with difficulties related to the loss of anal or bladder control. The individual's well-being and daily activities are compromised by the loss of control over elimination of feces and urine, the possible leaks from the pouch and loud flatulence (Bonill-de-las-Nieves et al., 2014). Ostomates may have difficulty returning to their daily activities and this could cause them to avoid interactions with people, become introverted and over time can resort to social isolation as a form of hiding their bodies (Kittscha et al., 2022; Gautam et al., 2016). These psychological effects can prompt self-deprecating experiences that has been linked to feelings of mutilation, reduced self-efficacy and incapacitation (Silva et al., 2019).
Ostomized patients go through gradual changes over time, from a period of fear and anxiety to a period of acceptance, during this process ostomates develop coping strategies to deal with the problems or changes that occur (Petersén and Carlsson, 2021; Bonil-de-las-Nieves et al., 2014). According to Sena (2018), up to 80% of patients do not receive the desired amount of information before their discharge from the hospital and this results in lack of confidence and inadequate knowledge on how to properly manage the ostomy. Due to the numerous changes experienced by ostomates there is an urgent need to explore the lived experiences of patients and the different coping strategies they adopt, which is the focus of this study.
2. Theoretical framework
The Transactional Theory of Stress by Lazarus and Folkman (Lazarus and Folkman, 1984) and Johnsons Behavioural Model (Johnson, 2011) are the two theories that were used in this study. The Transactional Theory was chosen to guide the quantitative part of the study while the Johnson Behavioural Model served as guide for the qualitative part of the study.
The transactional theory suggests that how an individual's response to stress is influenced by the role of appraisal and cognitive process through which meaning is ascribed to stimuli/stress (Lazarus and Folkman, 1984; Biggs et al., 2017). The transactional theory of stress is useful in describing the primary and secondary appraisal of ostomates to their living with an ostomy. It describes to what degree the ostomy (transaction) affects the well-being of the individual. Furthermore, the theory can be used to describe what coping strategy is utilized by ostomates and whether the individuals utilize a problem-focused approach or an emotion-focused approach in managing the cause of the stress (ostomy). An ostomates choice of appraisal (primary or secondary) will lead to a choice of a coping style used to adapt to the situation.
On the other hand, the Johnson Behavioural System Model identifies an individual as a behavioural system that acts in a patterned, purposeful and repetitive way (Johnson, 2011). For application to the study, an ostomate is seen as a behavioural system having a disruption in six of the subsystems identified in Johnson Behavioural System Model. The presence of a stoma may cause situations that distort the aggressive, dependency, ingestive, eliminative, sexual and aggressive subsystems. A stoma is a stressor capable of causing stress that affects the behavioural individual. How an ostomate appraises stress (stoma) determines whether coping strategies are initiated to manage the stressor. If a primary appraisal is made, the ostomate evaluates how the stoma affects his/her life. When a secondary appraisal is made, the ostomate then determines what coping strategies can be adapted to cope with the stressor. Furthermore, the ostomate may develop an adaptive or maladaptive coping strategy to deal with the stress.
3. Methods
3.1. Study design and setting
For this study, a mixed-method of research design was used. This study employed a concurrent triangulation design that generally involves the concurrent, but separate collection and analysis of quantitative and qualitative data.
The study was conducted at the Surgical Outpatient Department (SOPD) of a University Teaching Hospital in Kwara State, Nigeria. The hospital serves as a training institution for medical and paramedical personnel and as a referral center to other hospitals around it.
3.2. Target population
For the purpose of this study, the target population were ostomy patients who had been living with an ostomy for up to one month and are attending the ostomy clinic during the duration of the study. Records from the hospital showed that an estimated 20 ostomates visit the ostomy clinic every two months, therefore the population of this study comprised of all ostomates that visited the clinic during the time of data collection.
3.3. Sampling technique and inclusion criteria
For the quantitative aspect of the study, the sampling method used was probability sampling technique. For the purpose of this study all ostomates who met the inclusion criteria and attend the ostomy clinic during the duration of the study were invited to participate.
For the qualitative aspect of the study, purposive sampling technique was employed to recruit participants. Sample size for the study was determined by saturation of data. Saturation was adjudged when no new information is gathered when recruiting more participants. Saturation was attained after 15 interviews. However, 3 more interviews were conducted to ensure there were no new or lost information.
The inclusion criteria for this study include ostomates: with a temporary or permanent stoma, that have been living with an ostomy for at least one month, that are above the age of 18 and who are willing to participate in the study. The following ostomates were excluded from the study: ostomates with disabilities and ostomates less than 18 years.
3.4. Data collection
For the quantitative aspect, the instrument for data collection was an adapted questionnaire. The questionnaire consisted of two sections. Section A was used to obtain the participant's demographic profile, while section B assessed the frequency of coping styles utilized by the participant. The questionnaire consisted of 18 items that cut across the subscales of the Brief COPE inventory and was measured on a scale of 1–4. The quantitative aspect of this study focused on the coping strategies utilized by the ostomates (Table 1).
Table 1.
Coping style scores of ostomates.
| Coping styles | Mean |
|---|---|
| Venting of Emotions | 4.0 |
| Acceptance | 4.0 |
| Religious coping | 3.40 |
| Use of emotional support | 3.13 |
| Positive reinterpretation and growth | 3.0 |
| Active coping | 2.93 |
| Use of Instrumental support | 2.80 |
| Substance use | 1.80 |
| Behavioral disengagement | 1.73 |
| Mental disengagement | 1.4 |
| Denial | 1.1 |
| Humor | 1.00 |
In the qualitative aspect, data was collected through individual interviews with the help of an interview guide, digital recorder and field notes. An interview guide was developed to explore the participant's lived experience with an ostomy. The questions of the interview were developed based on the systems from the Johnson's behavioral model and the objectives of the study. The interview was conducted based on the language preference of the participant.
3.5. Reliability, validity and data quality
For this study, the reliability of the data was determined using the test-retest method. The questionnaire was pre-tested on 5 participants with similar characteristics to the study population. Their results were however not added in the final data presentation. To ensure reliability, triangulation was facilitated.
To ensure data quality, the criteria of credibility, transferability, dependability and confirmability were. To ensure credibility, only participants who met with the inclusion criteria were selected for the study. For transferability, a full description of participants responses was documented in the data report.
3.6. Data analysis
The quantitative data collected for the study were firstly checked for errors, cleaned and analyzed using the Statistical Package for Social Sciences (SPSS), version 25. Frequencies and percentages were calculated for demographic characteristics and responses of study participants. The Mann-Whitney U test and the Spearman rank correlation were respectively used to determine the statistical difference and relationship between different variables of the study. The level of significance was set to P < 0.1. The interviews were transcribed verbatim and data was transcribed by making use of an audio-recording device and a notebook. The findings were organized according to the pre developed themes from the subsystems listed in the Johnsons Behavioral Systems model thereafter, the data was analyzed using Tesch's content analysis approach (Tesch, 2013). Coding was done without the use of any qualitative data analysis software.
3.7. Ethical considerations
Before the commencement of the study, the study proposal was submitted to the Ethical Board of the University of Ilorin Teaching Hospital, Ilorin, Kwara State, Nigeria and approval was obtained. After securing the ethical approval, patients were met at the SOPD of the hospital. Before participating in the study, consent forms were provided to willing participants where the reason for the research was clearly stated. Participants were also informed that they were not compelled to participate in the study and their refusal to participate will not put them at any disadvantage. Furthermore, request was also obtained from participants to have the interview recorded in order to ensure proper data analysis. Throughout the research process, steps were implemented to ensure the study complied with all other ethical principles of research.
4. Results
4.1. Socio-demographic profile of participants
The socio-demographic characteristics of participants revealed that eight male participants and seven female participants were interviewed with their ages ranging between 18 and 65 years. Majority (66%) of the participants were married. With regards to duration of living with the ostomy, majority (33.7%) of the participants had spent about 6–12 months with the stoma. The most common indication for ostomy was colorectal cancer as indicated by 40% of the participants (Table 2).
Table 2.
Socio-demographic profile of participants.
| Variables |
Frequency (n = 15) |
Percentage (%) |
|---|---|---|
| Age | ||
| 18–24 | 2 | 13.3 |
| 25–34 | 3 | 20 |
| 35–44 | 2 | 13.3 |
| 45–54 | 5 | 33.3 |
| 55–64 | 1 | 6.7 |
| 65 and above | 2 | 13.3 |
| Gender | ||
| Male | 8 | 53.3 |
| Female | 7 | 46.6 |
| Marital status | ||
| Single | 2 | 13.3 |
| Married | 10 | 66.6 |
| Widowed | 2 | 13.3 |
| Separated | 1 | 6.7 |
| Duration of living with ostomy | ||
| 1–3 months | 3 | 20 |
| 4–6 months | 1 | 6.7 |
| 7 months to 1 years | 5 | 33.3 |
| Above 1 year | 6 | 40 |
| Type of ostomy | ||
| Colostomy | 9 | 60 |
| Urostomy | 2 | 13.3 |
| Ileostomy | 3 | 20 |
| Colostomy & urostomy | 1 | 6.7 |
| Status of ostomy | ||
| Temporary | 10 | 66.6 |
| Permanent | 5 | 33.3 |
| Indication | ||
| Colorectal cancer | 6 | 40 |
| Bladder cancer | 1 | 6.7 |
| Trauma | 3 | 20 |
| Other causes | 4 | 26.6 |
| Unknown | 1 | 6.7 |
4.2. Testing of hypotheses
Table 3 shows the comparison between participants’ gender and the coping strategy utilized. Results showed that there is no significant difference in the coping strategy between males and females (P = .303). We therefore accept the null hypothesis which states that there is no association between the gender and the coping strategies utilized by ostomates in University of Ilorin Teaching Hospital, Ilorin, Kwara State.
Table 3.
Gender and status-based differences in Coping Strategy.
| Mann-Whitney U | Z | P-value | |
|---|---|---|---|
| Gender | 19.500 | −1.030 | .303 |
Table 4 shows the relationship between duration of living with ostomy and coping strategies utilized by the participants. It was observed that participants with longer duration of living with ostomy had significant maladaptive coping strategy (r = -0.46; p = .008) as a negative correlation exist between the two variables. We therefore fail to accept the hypothesis.
Table 4.
Relationship between Duration of living with ostomy and Coping Strategy.
| Characteristic | r | p value |
|---|---|---|
| Duration | −0.46 | .008∗ |
r: Correlation coefficient; ∗: p < 0.1.
A total of 6 themes and 16 categories were generated from the study (Table 5).
Table 5.
Main themes and categories.
| Main themes | Categories |
|---|---|
| Attachment subsystem |
|
| Aggressive subsystem |
|
| Ingestive subsystem |
|
| Eliminative subsystem |
|
| Sexual subsystem |
|
| Maintaining equilibrium in the system |
|
4.2.1. Theme 1: attachment subsystem
The theme, attachment subsystem was explored to discover the effect of ostomy on participants relationships with families and friends, as well as the effect on their social lifestyles. Three categories were realized under this theme. These were relationship with family and friends, stigma face by ostomates, effects of ostomy on work life and participation in social activities.
In response to the question “how has having an ostomy affected your relationship with family and friends?" a good number (66.7%; n = 10) of the ostomates had the support of their families and friends and also stated that the support was crucial to their healing process
“Well, it affected me partly, but with the help of my brothers I got the support I needed they helped me do everything, they bathed for me, cooked for me and did all the things I needed. But all this was at the initial part of the surgery now I can do everything myself” participant 2, Male
“It did not affect me much because I chat with my friends on social media, I do not allow them come to visit me” participant 15, Female
Less than half (40%; n = 6) of the participants had difficulty in carrying on with work as the presence of the stoma reduced their ability to work effectively.
“My work I am not able to work well like before sometimes when I want to carry a bag of rice or something like a table, I cannot carry it well because the nylon can burst. The plaster I use to hold it sometimes does not stay so if I carry things with weight the nylon will burst. I have to call the small boy close… I usually use perfume to kill the smell but you know how feces smell sometimes the smell is too strong and the perfume cannot kill the smell” participant 4, Female
“I don't do any work, I am already old my wife and children at home do everything for me they clean me up, they bath me and they change the bag for me” participant 5, Male
A total of 9 of 15 participants attested that they reduced social engagements due to the presence of the ostomy. While others devised other means of engaging in social activities. Some of their responses include:
It has not affected my social life at all. Only my husband and my mum know about my condition, most people i know sell goods in the market, so we don't mix very well. I go to work and sell my market, I don't mind anyone” participant 6, Female
“I had to caution myself, I don't go out, I had to rent another house somewhere and i have avoided going for any occasion since the surgery. Some of my family members visit sometimes but they don't care about me except my first daughter” participant 1, Male
4.2.2. Theme 2: aggressive subsystem
The aggressive subsystem was explored to identify the threats caused by the presence of ostomy and the defense responses initiated by the participants to protect and preserve their territory. Categories that emerged from this theme include; initial reaction to ostomy, coping with ostomy, challenges caused by ostomy appliance, crucial lifestyle modification and financing the ostomy.
In response to the question, “How did you feel when you were told about the ostomy” Findings show that the participants had an array of emotions, some of the participants had time to process their emotions while others only woke up post operation to find out they had a stoma.
“I almost died, I cried and cried. The doctor said I have cancer and I will poo from a bag. After the surgery when I saw the bag and the feaces inside I cried for a long time” participant 1, Female
“I felt bad o, very bad because I know it will affect my job. I sell food. I was thinking how I will sell food in this my condition “participant 4, Female
“Well, I am a person that accepts my faith. Immediately they told me about it I was scared, but when they explained to me that it would not last forever and they will reverse it, I felt better” participant 2, Male
Having a stoma posed various challenges in the lives of ostomates. This category realized four other sub-categories namely; disruption in the sleep pattern, travel challenges, clothing challenges and challenges with the stoma appliance.
“I could not sleep well. I slept on my side for 10 months and it was not comfortable at all. At times I sleep sitting down. When I turn in my sleep; the colostomy makes loud noises. One time when I was sleeping, the bag burst and feaces spread everywhere, my son had to carry mop to clean everywhere. Oh God, i have really suffered” participant 1, Female
“Oh yes very much I love lying down on my chest or side and colostomy is on the right side so there is no way I will lie on my side that the feces will not run to my back so I have to lay on my …Every midnight I change the nylon about twice then if I eat late that's a problem, I will be up all-night changing nylon and disturbing everyone” participant 2, Male
In response to the question “how has the ostomy affected your travelling?” Most (80%; n = 12) of the participants reported that they had to schedule their travelling and avoided staying out of their homes for long periods.
“As regards traveling, I travel based on calculations if I eat around 8 AM that means I have four hours until the bag gets filled up so I schedule my outing so that I will be back home before the nylon gets full. …Also, I do not go to far places when I have to travel I do not eat I only take little snacks and I eat foods like rice because they make the feaces hard” participant 2, Male
Some of the participants complained about how having an ostomy affected their wardrobe choices. Many of them had to wear certain type of clothes
“The bag usually swells up in my clothes, so I cannot wear anything tight, I have to use a wrapper to hold the polytene bag” participant 4, Female
“I use to be someone who loves fancy clothes. But since the colostomy, I chose just 5 clothes that I have been wearing. Sometimes I wear like two underwear and a tight boxer so that when the nylon leaks, the clothes can absorb the feaces” participant 2, Male
Almost all (73.3%; n = 11) the participants used polythene bags to collect effluents from the ostomy. The participants described the challenges they faced using the stoma appliance. Some of their responses include:
“The pouching system is not available like the doctors told me, the bag is not available in Nigeria, we checked everywhere. I had to order for the bag from the United States. The hospital needs to make the bag available so that people can buy, I have to use nylon bag and it is not all that comfortable, then I use plaster to hold the edges and this makes my skin red” participant 2, Male
“I don't know about any bag; I only use a nylon and I am okay with it. The doctor spoke about one bag like that, but it is very expensive. I wrap the nylon with gauze and plaster. It is not comfortable at all because sometimes the nylon is not strong, but I try to double the nylon”. participant 12, Female
When asked about the most crucial modification the ostomy has made to their lifestyle, the participants responded thus:
“The most difficult part has been my psychological well-being and my religion sometimes I feel so upset I have to sit down and cry until I feel better… There was a time I was going to the mosque for Friday prayer I was about to enter the mosque when the nylon i packed just burst, I had to go back home, I could not say my prayers and I felt ashamed” participant 3, Male
“I am in party woman, I had to leave my house and come here and since the surgery I have not gone back. I got an apartment close to the hospital so I can be coming to see the doctor. I have not traveled back home I miss my home, I miss my friends but it is better to stay here than to go and meet them there” participant 1, Female
Most participants noted that having an ostomy was a financial burden. This category explains the challenges faced by ostomates in procuring ostomy supplies.
“I don't know how I will have coped without the support of my daughter. for the past one-year i have spent 50 thousand naira on ostomy appliances every week” participant 1, Female
“The disease is an expensive one, it requires so much money, it dictates what you eat, how you live and how you function as a human being “participant 3, Male
4.2.3. Theme 3: dependency subsystem
The dependency subsystem was explored to identify how the ostomy affected the physical ability of the ostomate. Categories that emerged from this theme include Ability to perform activities of daily living, physical ability of ostomates and effects of ostomy on the skin integrity.
Participants noted that at the initial stage, having an ostomy deterred them from performing activities of daily living. Most participants were able to function only with the assistance of family members.
“After the operation, I did not bath, the nurses said I should use a damp towel to clean my body. I am still afraid of pouring water on my whole body, so I don't bath completely” participant 15, Female
“Actually, I have two wives and plenty children, so I don't do any work. My wife and children do everything for me, they clean me, change the bag for me. They take care of me well” participant 10, Male
This subtheme explains the overall physical ability of the participants following the stoma surgery. Almost all (n = 14) the participants could not perform the same activities they are used to before the ostomy.
“I use to hustle a lot, go to the warehouse and travel to buy goods. Since the stoma was created, I have to sit at home because I don't have the strength to do the things I use to do before” participant 12, Female
“I cannot do the kind of work I use to do before the surgery. Although I can still do some work on the cows for sale but I am not strong like before” participant 10, Male
This subtheme explains that how having an ostomy caused discomfort to the peristomal skin. A good number (66.7%; n = 10) of the participants noted that when effluents from the stoma come in contact with their skin it caused skin irritations.
“My skin reacts to the plaster I use to hold the nylon, it itches and gives me rashes and injuries around the stoma area” participant 8; Female
“The skin around the stoma use to itch a lot, especially when feaces leaks from the bag. The itching is usually intense and painful “participant 7, Male
4.2.4. Theme 4: ingestive subsystem
The ingestive subsystem was explored to identify how having an ostomy affected the feeding pattern of ostomates. In response to the question “How did having an ostomy affect the food you eat” some participants had to make dietary modifications why others maintained their feeding pattern.
“My food? no it does not affect my feeding at all if I package myself, I go to my shop I don't eat much normally so the colostomy did not disturb me. Any food I eat will just flow inside the nylon bag and then I enter my shop and change the nylon” participant 4, female
“Some foods produce more feces than the others for example vegetables. when I eat vegetable, the feaces comes out the more. so, I avoid eating vegetables” participant 5, Male
4.2.5. Theme 4: eliminative subsystem
The eliminative subsystem was explored to find out the conditions in which waste products were beings eliminated from the body. Findings show that the ostomy changes the elimination pattern of participants as most of them had no control over the behavior of the ostomy. One category was realized from this theme; frequency of bag change.
As regards changing of the bag, most (86.6%; n = 13) ostomates changed their bags at home before leaving, while some needed to take breaks during work to change. One of the ileostomy patients mentioned that he once decided not to use a bag due to the frequency at which the bag got filled.
“I change the nylon about 4–5 times every day. Sometimes when I eat beans, I can change the bag up to 6 times. participant 15, Male
“The way I change the bag varies, sometimes 3 times sometimes 4 times during the day, but at night, the bag can open in my sleep. It depends on what I eat, when the bag gets full at night, I wake up and change the bag” participant 13, Male
4.2.6. Theme 5: sexual subsystem
Sexuality is a crucial part in the life of an adult. Findings from this study suggests that quite a number (46.6%; n = 7) of ostomates could not have optimum sexual relations with their partners after the creation of the ostomy. Few participants attributed this to lack of confidence about their body due to the presence of the ostomy.
“Having a colostomy affected me and my girlfriend, because at a point the was the one helping me change the bag. After a while she got tired, when she gets irritated, she shouts at me and so i began to hate her… I have not had intercourse since i had the colostomy, my girlfriend knew about the limits, most times we just had foreplay” participant 2; Male
Some participants had no issues with sexual relations as they still have relations with their partners
“Once I clean myself and package myself well, I still meet with my husband, although it's not all the time hut once the bag is not full and I am clean I meet with my husband” participant 4; Female
Participants narrated that they were not given adequate counseling before the stoma surgery neither were, they given information on how to manage the difficulty that came with having a stoma. For some other participants, they attested that no amount of counseling could prepare them for their new body reality.
“Yes, they told me, they told me they will perform a surgery and I will poo from my side. I asked them if it's permanent and they said they don't know. I cried so much, I was always crying, I lost so much weight and I looked like a chicken” participant 1, Female
“They did not talk to me before the surgery, although I was in pain so I couldn't understand all they said. It was when I woke up from the surgery that they told me that had to save my life and that's why they gave me a colostomy. I was not prepared for it” participant 2, Male
4.3. Coping styles used by ostomates
Analysis of the coping styles was carried out by calculating the mean and median of the coping styles utilized. A total of 12 coping styles were studied. The most frequently used coping strategies were venting of emotions (100%), acceptance (100%), religious coping (60%) and use of emotional support (Table 6). Rating of the rating the coping style was based on a scale of “I usually don't do this at all” to “I usually do it a lot”.
Table 6.
Coping style scores of ostomates.
| Coping styles | Mean |
|---|---|
| Venting of Emotions | 4.0 |
| Acceptance | 4.0 |
| Religious coping | 3.40 |
| Use of emotional support | 3.13 |
| Positive reinterpretation and growth | 3.0 |
| Active coping | 2.93 |
| Use of Instrumental support | 2.80 |
| Substance use | 1.80 |
| Behavioral disengagement | 1.73 |
| Mental disengagement | 1.4 |
| Denial | 1.1 |
| Humor | 1.00 |
Grouping of the coping styles adopted by the participants revealed that a good number utilized adaptive coping styles while living with the ostomy. However, findings suggest that participants with permanent ostomy mainly utilized maladaptive coping styles (Figure 1).
Figure 1.
Groupings of the different coping styles.
5. Discussion
Findings from this study suggest that the most common cause for ostomy creation was colorectal cancer. However, it is worthy of note that other indications such as intestinal obstruction and trauma also rank as leading causes of ostomy surgery among the participants. In a study conducted by Sirimarco et al. (2021) rectal and colon cancer was the most frequent cause of placement of ostomy while less frequent causes included intestinal obstruction, rectum or colon perforation due to foreign body or trauma and inflammatory bowel disease.
This study showed that there is no gender-based difference in experience and coping strategies of patients with ostomy. Both male and female participants experienced despair and imbalance in all the subsystems highlighted and utilized venting of emotions, acceptance and religious coping as strategies to cope with ostomy. Some studies identified that women are more concerned about their appearance, more diligent in stoma care but demonstrate higher levels of depression and fear than men living with ostomy (Liao and Qin, 2014; Sasaki et al., 2012). On the contrary, another study noted that characteristics of ostomy such as leakage, smell and noise could increase negative emotions among men and cause impaired adjustment since cultural dynamics equates power and control to the male body (Dellafiore et al., 2022; Gautam and Poudel, 2016).
As regards their relationship with family and friends, participants reported that they had the support of their loved ones. Stating that family and friends offered physical, emotional and financial assistance to them in their time of need. Furthermore, ostomates highlighted that social media enabled them to interact with their loved ones without physical contact. This highlights the crucial role of family members in assisting individuals with ostomy to adapt. In a study by Cengiz and Bahar (2017), participants with ileostomy and colostomy stated that good family functioning is an important factor in the adapting to the use of ostomy.
Participants could not effectively perform their daily activities as they used to. This finding is consistent with a study by Campos et al. (2017) where a considerable number of the participants who returned to work post-ostomy period had a decline in the performance of their professional activities. Conversely, a study has shown that ostomates go through anger and panic due to the need to check for leaks and these emotions could lead to anxiety and social isolation (Nafees et al., 2018). One participant however did not experience any decline in work activities. This is because this ostomate is aged and claimed that his wives and children did all the work that need to be done on his behalf.
A good number of the study participants restricted their social engagement. Their self-image was impaired and they did not feel comfortable mingling with other people during social events. This could be because most ostomates feared that they will be stigmatized by the society if people are aware that they had an ostomy. This finding is in line with a study by Sena (2018) where participants avoided social activities because they did not want to embarrass themselves with the odor and sound of the stoma. Almost all the participants restricted informing others about the existence of the ostomy, participants only revealed their condition to close/nuclear family. Similar findings were observed in some studies were participants feared disclosing information related to the ostomy with others due to fear of how they will react if they know about the existence of their ostomy (Sena, 2018; Gautam et al., 2016).
Almost all the participants in this study had their sleep pattern altered due to the ostomy. They had trouble finding a good sleep position and also had to wake up several times during the night to change the pouching system. While some ostomates woke up to empty the ostomy pouch, others woke up to re-apply adhesive tapes around the polythene bags used as a substitute to the ostomy pouch. Participants also had to eat dinner at earlier hours in order to change the pouching system before going to sleep, they noted that eating late supper could result in more frequent pouching system changes which shorten their sleep duration. This is consistent with similar studies where participants reported that having to avoid some sleeping positions dues to the site of the stoma which aggravated their sleep disturbances (Sena, 2018; Choudhary and Kaur, 2020).
Participants had travel restrictions due to the ostomy. Some participants completely avoided travelling while others only travelled short distances in order to avoid the need for bag change during the course of the journey. The process of changing the pouching system is embarrassing for participants because of the unpleasant sight and odor of the effluents. Hence, most participants will rather avoid circumstances that lead to pouch change in public. This finding is further corroborated by findings from a study conducted by Choudhary and Kaur (2020) where difficulty changing bag and fear of passing flatulence in a public transport restricted ostomates from long travels. Having an ostomy affected the wardrobe choices of participants, most of them had to wear loose fitting clothes to prevent the pouch from protruding. Some other ostomates reported that they had to double their underwear in order to absorb effluents in case of leakage. This finding was similar to a study where participants had to modify their wardrobe choices to accommodate big and loose clothes that conceal the stoma bag (Thorpe et al., 2016).
Majority of the participants in this study created a makeshift ostomy pouch by using a polythene bag commonly called “Moi-Moi nylon” and using a plaster to hold it in place. This is likely due to low availability of ostomy pouches in the country. A study conducted on gastrointestinal stomas in children in Nigeria revealed that most of the mothers of participants had no access to Pouching systems and had to improvise appliances from pieces of bedsheet. Unsuitable ostomy devices may be responsible for several unpleasant experiences faced by the participants of this study. This is corroborated by study which revealed that the quality of ostomy devices greatly affects the experiences and quality of life of ostomates (Liao and Qin, 2014). More so, Ostomates also mentioned that they had to use deodorants and perfumes to mask the odour produced by the effluents of the stoma. A possible reason for this could be because they perceived the odour from the stoma to be unpleasant and may be worried that people will be aware of the ostomy they tried to conceal. Several options such as pouch deodorants and odor eliminator sprays exist to eliminate airborne odors when changing a pouch in a public setting. However, the low availability of stoma appliance in Nigeria may be a hinder accessibility to ostomates.
Living with an ostomy resulted in crucial modifications in the lifestyle of participants. However, the modifications were subjective because each participant had unique values and lifestyle. Generally, the ostomy caused a deviation in the lives of participants and reduced their health-related quality of life. Findings from this study show that two Muslim participants reduced participation in congregational prayers due to the ostomy. This is because they felt that having the stoma made them impure and unfit to join prayers in congregation. One of the participants said he could not perform his duties as a Muslim cleric because he felt he was not worthy enough to face God. This may be because research shows that Muslim patients with stoma show a significantly lower quality of life and spiritual well-being post stoma surgery as compared to non-Muslims (Iqbal et al., 2014, 2016). Several research studies have also reported that Muslim participants found it difficult to join in congregational prayers due to fear of leakage and flatulence (Ahmad and Khan, 2011).
Most participants noted that having an ostomy is a financial burden due to the high cost of ostomy supplies. One of the ostomate stated that having an ostomy is an “expensive disease” as it required several lifestyle modifications. The financial challenges faced by the patients can be attributed to the lack of appropriate medical insurance in Nigeria resulting in increased out-of-pocket payment from medications and ostomy supplies. This is in line with the finding of a similar study where ostomates incurred financial challenges due to high cost of ostomy supplies and cost of transportation to and from the hospital (Sena, 2018; Ceylan and Vural, 2017; Dabirian et al., 2011).
Participants noted that they could not perform daily self-care activities when the ostomy was created except with the assistance of family members and nurses on the ward. However, as time elapsed, they could perform some activities such as bathing and eating by themselves. This may have been so because in the initial stage, patients may not be able to effectively manage the ostomy on their own. This study noted that participants had diminished strength following stoma creation as they could not engage in previous physical activities. Similar findings were reported in studies where ostomates experienced decline in energy rate and decline in daily activities (Ceylan and Vural, 2017; Thorpe et al., 2016).
Participants complained of skin irritations around the stoma site. This could be from reactions caused by prolonged used of adhesive plaster that is used to secure the make shift ostomy pouch. Studies showed that skin irritations around the stoma may result from leakage of effluents from the stoma (Choudhary and Kaur, 2020; Osinowo et al., 2018; Ceylan and Vural, 2017). This is in contrast with a study conducted by Sena (2018) where none of the participants had any skin complication around the stoma site. Two of the ostomates in this study used a barrier cream called “sudocream” to treat skin irritations and prevent further excoriation around the stoma site.
A good number of the participants had to modify their dietary options due to the presence of ostomy. They noted that they had to stop eating certain kinds of foods because of gas production and increased fecal output. Some participants stated that part of their distresses was having to avoid their favorite dishes to manage the stoma output. Patients may have a difficult time selecting appropriate foods due to lack of dietary education before discharge. A similar finding was stated in a study were participants reported dietary modifications in order to avoid discomfort such as belching, nausea and gas formation. Common foods that were avoided included beans, milk and curd (Shaffy et al., 2012).
This study revealed that a good number of the participants had changes as regards sexual relations with their partners. Participants stated that having the ostomy made them feel unattractive and thus, they could not be intimate with their partners. This finding was also reported in a study conducted by Choudhary and Kaur (2020) where majority of the participants limited or avoided sexual intercourse due to fear of looking unattractive. These reactions from the participants may be due to inadequate counselling on issues related to intimacy between ostomates and their partners. Some participants however noted that with proper hygiene and adequate timing, they had sexual relations with their partners. From this study, it was noted that there is low availability of pouching system in the study setting and so ostomates had to modify make shift pouching system using polythene bags.
6. Conclusion
This study highlighted the various challenges faced by ostomates. The major indication for ostomy in this study was colorectal cancer. Patients were shocked and experienced despair when they were told about the need for an ostomy. Support system of ostomates consisted of family and friends, who provided comfort and assistance. Having an ostomy affected the way ostomates performed activities of daily living. This study also highlighted that ostomates had challenges with odor from the ostomy and leakage from the pouching system. Low availability of pouching system was noted in the study setting hence, ostomates had to improvise with a make shift ostomy bags using polythene bags. Most popular coping styles used by participants include venting of emotions, acceptance, religious coping and emotional support respectively. Participants with permanent ostomy utilized maladaptive coping styles in comparison with patients with temporary stoma who mainly used adaptive coping styles.
6.1. Study limitations
The primary limitation to the generalization of the results from the study is the small sample size. Also, there is insufficient research studies on the topic. Additional research should be conducted on the lived experiences of patients with ostomy (pre and post ostomy creation).
Declarations
Author contribution statement
Fatimah A. Muhammad: Performed the experiments; Analyzed and interpreted the data; Contributed reagents, materials, analysis tools or data; Wrote the paper.
Oluwaseyi Abiodun Akpor: Conceived and designed the experiments; Analyzed and interpreted the data; Wrote the paper.
Oghenerobor B. Akpor: Analyzed and interpreted the data; Wrote the paper.
Funding statement
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Data availability statement
Data included in article/supp. material/referenced in article.
Declaration of interest's statement
The authors declare no conflict of interest.
Additional information
No additional information is available for this paper.
Acknowledgements
The authors are grateful to the Research Ethics Committee of the Teaching Hospital for approval granted to carry out the study. Special appreciation to all patients who participated in the study.
Appendix A. Supplementary data
The following is the supplementary data related to this article:
References
- Ahmad N., Khan M.A. Quality of life assessment in patients with stoma in Muslim population. Ann. Pak. Inst. Med. Sci. 2011;7(4):222–227. [Google Scholar]
- Ayaz-Alkaya S. Overview of psychosocial problems in individuals with stoma: a review of literature. Int. Wound J. 2019;16(1):243–249. doi: 10.1111/iwj.13018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Biggs A., Brough P., Drummond S. Lazarus and Folkman’s psychological stress and coping theory. Handbook Stress Health. 2017:349–364. [Google Scholar]
- Bonill-de-las-Nieves C., Celdrán-Mañas M., Hueso-Montoro C., Morales-Asencio J.M., Rivas-Marín C., Fernández-Gallego M.C. Living with digestive stomas: strategies to cope with the new bodily reality. Rev. Latino-Am. Enferm. 2014;22(3):394–400. doi: 10.1590/0104-1169.3208.2429. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Campos K.D., Bot L.H.B., Petroianu A., Rebelo P.A., Souza A.A.C.D., Panhoca I. The impact of colostomy on the patient's life. J. Coloproctol. 2017;37(3):205–210. [Google Scholar]
- Cengiz B., Bahar Z. Perceived barriers and home care needs when adapting to a fecal ostomy. J. Wound, Ostomy Cont. Nurs. 2017;44(1):63–68. doi: 10.1097/WON.0000000000000271. [DOI] [PubMed] [Google Scholar]
- Ceylan H., Vural F. Living with stoma–a phenomenological study. J. Nurs. Res. Pract. 2017;1(1):6–12. [Google Scholar]
- Choudhary M., Kaur H. Experiences of living with intestinal ostomy: a qualitative meta-synthesis. Indian J. Palliat. Care. 2020;26(4):421. doi: 10.4103/IJPC.IJPC_21_20. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dabirian A., Yaghmaei F., Rassouli M., Tafreshi M.Z. Quality of life in ostomy patients: a qualitative study. Patient Prefer. Adherence. 2011;5:1. doi: 10.2147/PPA.S14508. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dellafiore F., Manara D.F., Arrigoni C., Baroni I., Di Pasquale C., Nania T., et al. Predictors of adjustment to living with an ostomy: results of a cross-sectional study. Adv. Skin Wound Care. 2022;35(5):1–6. doi: 10.1097/01.ASW.0000823980.15166.35. [DOI] [PubMed] [Google Scholar]
- El-Tawil A., Nightingale P. Living with stoma: long-term effects on patients’ quality of life. J. Clin. Cell. Immunol. 2013;4(145):2. [Google Scholar]
- Gautam S., Poudel A. Effect of gender on psychosocial adjustment of colorectal cancer survivors with ostomy. J. Gastrointest. Oncol. 2016;7(6):938. doi: 10.21037/jgo.2016.09.02. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gautam S., Koirala S., Poudel A., Paudel D. Psychosocial adjustment among patients with ostomy: a survey in stoma clinics, Nepal. Nurs. Res. Rev. 2016;6:13. [Google Scholar]
- Iqbal F., Zaman S., Bowley D.M., Vaizey C.J. Quality of life after restorative proctocolectomy in Muslim patients. Gut. 2014;63(7):1197–1198. doi: 10.1136/gutjnl-2013-306136. [DOI] [PubMed] [Google Scholar]
- Iqbal F., Kujan O., Bowley D.M., Keighley M.R., Vaizey C.J. Quality of life after ostomy surgery in Muslim patients: a systematic review of the literature and suggestions for clinical practice. J. Wound, Ostomy Cont. Nurs. 2016;43(4):385–391. doi: 10.1097/WON.0000000000000235. [DOI] [PubMed] [Google Scholar]
- Irabor D.O., Arowolo A., Afolabi A.A. Colon and rectal cancer in Ibadan, Nigeria: an update. Colorectal Dis. 2010;12(7):43–49. doi: 10.1111/j.1463-1318.2009.01928.x. [DOI] [PubMed] [Google Scholar]
- Johnson D.E. 2011. Behavioral System Model. Nursing Theories: the Base for Professional Nursing Practice. [Google Scholar]
- Kittscha J., Fairbrother G., Bliokas V., Wilson V. Adjustment to an ostomy: an integrative literature review. J. Wound, Ostomy Cont. Nurs. 2022;49(5):439–448. doi: 10.1097/WON.0000000000000895. [DOI] [PubMed] [Google Scholar]
- Lazarus R.S., Folkman S. Springer publishing company; 1984. Stress, Appraisal, and Coping. [Google Scholar]
- Liao C., Qin Y. Factors associated with stoma quality of life among stoma patients. Int. J. Nurs. Sci. 2014;1(2):196–201. [Google Scholar]
- Nafees B., Størling Z.M., Hindsberger C., Lloyd A. The ostomy leak impact tool: development and validation of a new patient-reported tool to measure the burden of leakage in ostomy device users. Health Qual. Life Outcome. 2018;16(1):1–12. doi: 10.1186/s12955-018-1054-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Osinowo A.O., Balogun O.S., Olajide T.O., Lawal O.A., Adesanya A.A. An appraisal of intestinal stomas at a tertiary hospital in South Western, Nigeria. J. Clin. Sci. 2018 [Google Scholar]
- Pearson R., Knight S.R., Ng J.C., Robertson I., McKenzie C., Macdonald A.M. Stoma-related complications following ostomy surgery in 3 acute care hospitals: a cohort study. J. Wound, Ostomy Cont. Nurs. 2020;47(1):32–38. doi: 10.1097/WON.0000000000000605. [DOI] [PubMed] [Google Scholar]
- Petersén C., Carlsson E. Life with a stoma—coping with daily life: experiences from focus group interviews. J. Clin. Nurs. 2021;30(15-16):2309–2319. doi: 10.1111/jocn.15769. [DOI] [PubMed] [Google Scholar]
- Salomé G.M., Almeida S.A.D., Silveira M.M. Quality of life and self-esteem of patients with intestinal stoma. J. Coloproctol. 2014;34(4):231–239. [Google Scholar]
- Sasaki V.D.M., Pereira A.P.D.S., Ferreira A.M., Pinto M.H., Gomes J.J. Health care service for ostomy patients: profile of the clientele. J. Coloproctol. 2012;32(3):232–239. [Google Scholar]
- Sena A. University of Cape Coast; Ghana: 2018. Lived Experiences of People with Ostomies in the Accra metropolis. Doctoral Dissertation. [Google Scholar]
- Shaffy S.K., Kaur S., Das K., Gupta R. Physical, nutritional and sexual problems experienced by the patients with colostomy/ileostomy: a qualitative study. Nurs. Midwifery Res. J. 2012;8(3):210–222. [Google Scholar]
- Silva J.O., Gomes P., Gonçalves D., Viana C., Nogueira F., Goulart A., Leao P., Mota M.J., Peixoto P., Rodrigues A.M., Martins S.F. Quality of Life (QoL) Among Ostomized Patients-a cross-sectional study using Stoma-care QoL questionnaire about the influence of some clinical and demographic data on patients' QoL. J. Coloproctol. 2019;39(1):48–55. [Google Scholar]
- Sirimarco M.T., Moraes B.H.X.D., Oliveira D.R.L.S.D., Oliveira A.G.D., Schlinz P.A.F. Thirty years of the health care service for ostomy patients in Juiz de Fora and surroundings. Rev. Col. Bras. Cir. 2021;48 doi: 10.1590/0100-6991e-20202644. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Tesch R. Routledge; 2013. Qualitative Research: Analysis Types and Software. [Google Scholar]
- Thorpe G., Arthur A., McArthur M. Adjusting to bodily change following stoma formation: a phenomenological study. Disab. Rehab. 2016;38(18):1791–1802. doi: 10.3109/09638288.2015.1107768. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Data included in article/supp. material/referenced in article.