The family plays a key role in supporting and caring for patients with a gastrointestinal stoma (Burch, 2014; Abdullah et al, 2019). In many cases, both patients with a stoma and their families need attention and care (Cetolin et al, 2013). Where patients with a stoma require long-term care and are unable to perform it themselves, family members, as primary carers, are often responsible for providing this at home (Oliveira et al, 2014). This can put a heavy burden on these relatives. Family caregivers in these cases usually have to devote a lot of time to caring for the patient, which can affect their own health, employment, social activities and rest (Oliveira et al, 2014). It also affects the physical, mental and social aspects of family caregivers' circumstances, which can reduce their quality of life (Çelik et al, 2017). Caring for people with a stoma can be a major challenge because of their specific needs, such as that for stoma wound care (Reinhard et al, 2012).
Although the quality of life of family members caring for patients with long-term conditions has received a lot of attention in recent years (Radina, 2013), the literature shows studies about those caring for patients with a stoma are limited. In a study in Italy, Palma et al (2012) examined the quality of life of 123 family members caring for patients with a stoma. To assess the quality of life, they used the Caregiver Quality of Life Index–Cancer scale. The mean score of caregivers' quality of life in this study was 97.1 out of a total possible of 140, indicating a poor quality of life (a higher score means a lower quality of life). Palma et al (2012) recommended that further research on the quality of life of family members caring for patients with a stoma should be conducted. In another study, Bulbuloglu and Saritas (2019) examined the quality of life of family caregivers of patients who were being fed through an enteral tube at home. The study involved 95 family caregivers whose quality of life was assessed using the Rolls-Royce quality of life scale. This study showed these caregivers also had a poor quality of life (Bulbuloglu and Saritas, 2019).
The quality of life of these family carers affects not only the carers themselves but also the quality of care they provide for these patients (Baykara et al, 2020). Therefore, knowledge about their quality of life is needed. Because studies on this are lacking, this study to investigate the quality of life of family caregivers of patients with a stoma was conducted.
Methods
This study was carried out in 2020 in Iran. The type of study is descriptive. The sample consisted of 250 family caregivers of patients with cancer who had an intestinal stoma. The sample size was calculated based on the results of the previous study (Mollaei et al, 2019).
In this study, the caregiver was the father, mother, spouse, son or daughter who cared for the patient the most. The inclusion criteria for the study were: being the primary caregiver or one of the primary caregivers; being literate; and being able to consent to participate in the study. Family members with another person with chronic disease at home were excluded.
Sampling was performed when carers and their patients were referred to the stoma clinic of the Iranian Ostomy Association. Convenience sampling was used. After coordinating with the stoma clinic nurse supervisor and managers, the researchers went to the clinic during the morning shift and asked eligible caregivers to participate in the study. After they agreed to take part, they were asked to fill out the questionnaires in a private room in the clinic. At the time they completed the questionnaire, carers were not with the patient. The researcher was with the caregivers when they completed the questionnaire and was available if they needed anything explained. Questionnaires took about 30 minutes to complete but more time was allowed was needed.
Data collection tools
A demographic checklist and the Caregiver Quality of Life Index–Cancer (CQOLC) scale were used.
The demographic checklist included age, sex, level of education, relation with patient and marital status.
The CQOLC has 35 questions, which are categorised into four subscales: mental/emotional burden; lifestyle disruption; positive adaptation; and financial concerns (Weitzner et al, 1999). Answers to each question are given on a 5-point Likert scale, from ‘not at all’ (score 0) to ‘very much’ (score 4). The scores in each subscale are calculated separately. Finally, all the questions are scored together and the final score for quality of life is obtained. The final score of this questionnaire can range from 0 to 140 (Weitzner et al, 1999). A lower score in this questionnaire shows a higher quality of life (Palma et al, 2012). The validity and reliability (Cronbach's α 80% for reliability) of the Persian version of this tool have been determined by Khanjari et al (2012).
Ethical considerations
The study received ethical approval from Qazvin University of Medical Sciences (ethics code: IR.QUMS.REC.1398.049). Participants were informed of the study's aims and asked to read and sign the consent form. Participation in the study was voluntary. The information obtained from the caregivers taking part in the study was kept confidential.
Data analysis
Data were analysed using SPSSv16 software. To determine the normal distribution of the main variable (quality of life), the Kolmogorov-Smirnov test was used. The results of this test showed that the quality of life variable has a normal distribution. Because of the normality of the data, the Pearson correlation test was used to investigate the relationship between age (the only numerical variable) with an average score of quality of life. An independent t-test was used to investigate the difference in the mean score of quality of life between two-state qualitative variables such as sex and marital status. The one-way analysis of variance test was used to investigate the difference between the mean score of quality of life between qualitative variables of three states and more, such as the level of education.
Results
A total of 250 carers participated in this study. Of these, 143 (57.2%) were men. The average age of caregivers was 35.1 years. In terms of education, they mostly had diplomas achieved at age 18 at secondary school (166 people). In terms of relationships with patients, most participants were patients' offspring.
The mean score of quality of life was 75.8±7.5. Mean scores of mental/emotional burden, lifestyle disruption, positive adaptation, and financial concerns were 28.4±41, 17.3±3.2, 19.8±28, and 8.6±1.2 respectively.
Tables 1 and 2 show the five questions in which participants had the lowest scores (higher quality of life) and the highest scores (lower quality of life) respectively. Table 3 shows the relationship between caregivers' quality of life and its subscales with demographic variables. There was no significant relationship between quality of life and the demographic variables.
| Answers and number (%) of carers choosing each one | |||||
|---|---|---|---|---|---|
| Questions | Not at all | A little bit | Somewhat | Quite a bit | Very much |
| My daily life is imposed upon | td align="left">64 (25.6%) | 160 (64%) | 26 (10.4%) | 0 | 0 |
| My sleep is less restful | 40 (16%) | 116 (46.4%) | 70 (28%) | 22 (8.8%) | 2 (0.8%) |
| It is a challenge to maintain my outside interests | 56 (22.4%) | 124 (49.6%) | 56 (22.4%) | 13 (5.2%) | 1 (0.4%) |
| I fear my loved one will die | 36 (14.4%) | 116 (46.4%) | 88 (35.2%) | 10 (4%) | 0 |
| I am discouraged about the future | 37 (14.8%) | 110 (44%) | 88 (35.2%) | 14 (5.6%) | 1 (0.4) |
| Answers and number (%) of carers choosing each one | |||||
|---|---|---|---|---|---|
| Questions | Not at all | A little bit | Somewhat | Quite a bit | Very much |
| I am concerned about our insurance coverage | 0 | 0 | 69 (20%) | 131 (52.4%) | 50 (27.6%) |
| I have more of a positive outlook on life since my loved one's illness*, | 69 (14.8%) | 144 (57.6%) | 37 (27.6%) | 0 | 0 |
| I feel guilty | 1 (0.4%) | 3 (1.2%) | 40 (16%) | 131 (52.4%) | 75 (30%) |
| I feel frustrated | 2 (0.8%) | 2 (0.8%) | 46 (18.4%) | 103 (41.2%) | 97 (38.8%) |
| I have difficulty dealing with my loved one's changing eating habits | 7 (2.8%) | 12 (4.8%) | 65 (26%) | 81 (32.4%) | 85 (34%) |
| Items | Mental/emotional burden | Lifestyle disruption | Positive adaptation | Financial concerns | Total quality of life | P value for total quality of life | |
|---|---|---|---|---|---|---|---|
| Relationship between mean age and mean score | P=0.776, rr=0.014 | P=0.776, rr=-0.018 | P=0.056, rr=0.123 | P=0.861, rr=-0.011 | P=0.861, rr=-0.011 | ||
| Sex | Female | 28.05 | 28.05 | 19.54 | 8.50 | 75.11 | P=0.19 |
| Male | 28.58 | 28.58 | 20.00 | 8.78 | 76.38 | ||
| Marital status | Single | 28.35 | 16.83 | 19.62 | 8.58 | 75.46 | P=0.33 |
| Married | 28.36 | 17.26 | 20.09 | 8.79 | 76.43 | ||
| Education level | Under diploma** | 31.3529 | 18.3529 | 20.0000 | 7.8824 | 79.4706 | P=0.09 |
| Diploma* | 28.3072 | 17.1205 | 19.7530 | 8.6687 | 75.9096 | ||
| Bachelor's degree | 27.6563 | 16.2656 | 19.9688 | 8.7656 | 74.5469 | ||
| Master's degree | 29.0000 | 18.6667 | 18.3333 | 10.6667 | 79.0000 | ||
| Relative | Spouse | 28.3623 | 16.8406 | 19.8986 | 8.7826 | 75.6957 | P=0.97 |
| Offspring | 28.3376 | 17.0446 | 19.8025 | 8.6051 | 75.8662 | ||
| Other | 28.4583 | 17.2083 | 19.5833 | 8.7083 | 76.0833 | ||
Discussion
The results of this study show that the quality of life of family members caring for patients with a stoma is relatively poor. Carers reported the greatest effect on quality of life in the areas of financial concerns and positive adaptation. As mentioned above, no relationship was observed between carers' demographic variables and their quality of life.
Although several studies exist on the quality of life of patients with cancer, studies on the quality of life of those caring for cancer patients with intestinal stoma are limited. Previous studies have showed that those caring for patients with cancer usually have a poor of quality of life (Lim et al, 2017; Wang et al, 2020). They usually experience some degree of role change, financial problems, job interruption, stress, anxiety, depression, sleep problems, pain, fatigue, fear, worry and loneliness related to the responsibility of caring (Stenberg et al, 2010; Lim et al, 2017; Selamat Din et al, 2017; Geng et al, 2018; Lee Wong et al, 2020). In addition, caring for a cancer patient with intestinal stoma may be particularly difficult, especially if the patient has advanced disease.
Palma et al (2012) used a version of the same questionnaire to assess the quality of life of 114 family members caring for patients with a stoma. Although their results showed these carers have a poor quality of life, there are some differences in the details between those findings and the results of the present study. The mean score of quality of life for carers in the present study was 75, whereas the mean score of quality of life for family carers who took part in Palma et al's (2012) study was 97. The relatively better situation of carers in the present study compared with those in Palma et al's study (2012) could be related to the different times. In the authors' clinical experience, the attention paid to and services provided to patients with a stoma in recent years have improved in Iran, which may be one reason for the better quality of life of participants in the later study. Among measures taken are the development of the Iranian Ostomy Association as well as the increase in wound care nurses working in the community who provide specialised services to patients at home.
Although participants in the present study had a poor quality of life in all four subscales, the worst scores were in the financial concerns and positive adaptation subscales.
Financial concerns include economic pressures as well as insurance coverage. Much of the equipment and supplies used for patients with a stoma in Iran, such as ostomy bags, are imported. In many cases, devices are not supported by insurance companies, and there is a lot of economic pressure on carers and patients to provide them. Also, because of US government sanctions, many manufacturers will not work with companies in Iran, so most wound products are not available in Iran. In addition, the cost of the products that are available is high.
Positive adaptation included having adequate information about the patient's illness and future, a deep relationship with the patient and other family members, support from loved ones, social support and a more positive outlook on life. Society's view of patients with ostomy and their carers is not supportive in some situation and patients and carers may be isolated socially, which could reduce their quality of life (Sarabi et al, 2015; Kirkland-Kyhn et al, 2018).
It appears that those caring for people with long-term conditions, such as patients with an intestinal stoma, need specific care and attention themselves. Reinhard et al (2012) called those caring for patients with high care needs as ‘hidden patients’. The authors also found that, in some cases, patients require a great deal of attention so their family caregivers have a large workload (Reinhard et al, 2020). This may be have significant physical and psychological negative consequences for caregivers.
Limitations
This study has several limitations. The main one is that only caregivers with patients who were referred to the stoma association's clinic were recruited. The carers were from one province in Iran, which affects generalisation of the results. In addition, the data were collected using a self-reported method.
Conclusion
Caring for patients with a stoma can be difficult for family members, and reduces their quality of life.
The results shows that there is need to improve carers' quality of life. Support programmes could address this, and nurses could have a role in devising and providing these.
Because of the lack of studies in this field, more research in this area is required.