End-stage renal disease (ESRD) is characterised by losing 85% or more of the kidneys' functioning (National Kidney Foundation, 2020). It is considered one of the major diseases that affect the quality of life (QoL) of patients (Rahimipour et al, 2015). In Jordan, the total number of patients with ESRD by the end of 2016 was 5352; of them, 5130 patients were receiving haemodialysis (HD) treatment and 380 patients out of the 5130 HD patients died during that same year. In the latest report from Jordan, the number of new cases of ESRD for the year 2016 was 829 patients, which is considered a significant rise when compared with previous years (Al-Quaisi and Assad, 2016). In addition, there is a high rate of under-diagnosed renal disease among Jordanians (Khalil et al, 2018). According to the Centers for Disease Control and Prevention (CDC) (2013), renal disease is among the top 10 causes of death in Jordan (4%), which also include ischaemic heart disease at 18% and diabetes at 7%.
Patients with ESRD receiving HD treatment may have many physical problems that affect their QoL, such as increased urea, joint pain, electrolyte imbalance, hypertension and heart problems (Orlandi et al, 2012; Saffari et al, 2013; Khalil et al, 2018), fatigue, sleep disturbances, nutritional constraints, pain and limited physical activities (Alshraifeen et al, 2014; Santos et al, 2017; Al Awwa and Jallad, 2018). These patients also face psychological challenges, including disturbances in body image, feelings of hopelessness, low self-esteem and helplessness, and dependency on family members, healthcare providers and the use of technology (Rahimipour et al, 2015; Daąbrowska-Bender et al, 2018). Stress, anxiety, uncertainty, and depression are also common (Sahaf and Ilali, 2017; Alradaydeh and Khalil, 2018; Al Awwa and Jallad, 2018). The number of patients diagnosed with psychiatric problems such as depression, schizophrenia and dementia in the ESRD population is substantially higher than that observed in patients with other chronic illnesses (Saffari et al, 2013; Kara, 2018). For example, the prevalence of depression among patients with ESRD is 22.8% to 39.3% (Ma and Li, 2016), while in diabetes it is 12% (Andreoulakis et al, 2012). Thus, patients struggling with chronic diseases such as ESRD may often engage in a process of thinking and rethinking about the meaning of life and death (Ottaviani et al, 2014; Fradelos et al, 2015)
Hope is a valuable human response that has received increasing attention in recent years (Fradelos et al, 2015; Melo et al, 2016). Taheri-Kharameh (2016) perceived hope as important to human life as it provides an optimistic view of the future and an effective adjustment mechanism that enable individuals to overcome current difficulties. Snyder (2002) suggested that hope should include goal-oriented energy and positive persistent intent to reach a goal, using an active cognitive process. According to Farran et al (1995):
‘Hope constitutes an essential experience of the human condition. It functions as a way of feeling, a way of thinking, a way of behaving, and a way of relating to oneself and one's world. Hope has the ability to be fluid in its expectations, and in the event that desired object or outcome does not occur, hope can still be present.’
Hope can make a difference to patients' experiences with chronic diseases and in the way they live their lives (Davison and Simpson, 2006; Ottaviani et al, 2014). Hope has a beneficial effect on individuals' health because it enables people to cope with conflicts, achieve healthy objectives, maintain QoL, and promote health (Sahaf et al, 2017; Bravin et al, 2019). Rahimipour et al (2015) conducted a clinical trial on the effect of hope therapy on anxiety, depression and stress among 50 patients undergoing HD. They found a significant reduction in mean scores of anxiety, depression and stress in the hope therapy group before and after the intervention, and that changes in mean scores of depression, anxiety and stress were lower in the hope therapy group compared with the placebo group. In another study, conducted with a random sample of 65 renal patients in Turkey, the findings indicated that lower levels of hope contributed to more depression and non-functional coping strategies among 50 patients with ESRD compared with the healthy control group (Yucens et al, 2019).
The meaning of hope and QoL of patients experiencing ESRD is shaped through cultural, social and family relationships (Melo et al, 2016; Al-Ghabeesh et al, 2018). The literature suggests that positive social support from families and friends increases the satisfaction of patients on dialysis with the care they receive and their QoL related to health in general (Silva et al, 2016). Cultural factors and beliefs were found to affect the patient's decision-making concerning treatment (Muscat et al, 2018).
Quality of life may be defined as:
‘The welfare of a patient on the basis of aspects of functional status (including physical, mental, and social factors) and a relative balance of expectations and experiences in the face of changing health.’
Quality of life can be viewed as a person's feelings regarding their living status with reference to their personal objectives and expectations, according to their own cultural and value systems (Zhou et al, 2017). Compared with most chronic illnesses, ESRD is a debilitating, progressive and restricting disease that is likely to have a major impact on patients' health and, in particular, QoL and general wellbeing (Santos et al, 2017; Al Awwa and Jallad, 2018).
The increase in the number of patients receiving HD treatment and the increase in the prevalence of ESRD among the Jordanian population suggests that it is a growing problem that requires investigation into the role of hope in improving QoL so that health and social services could be tailored according to the health needs of the HD population. Despite the growing interest in examining all factors that may influence the QoL of patients with ESRD, studies emerging from the Arab world and, in particular, from Jordan, are extremely limited. The role of perceived hope in HD patients has not been fully investigated in Jordan. Therefore, this study aimed to examine levels of hope and examine hope association with QoL among people receiving HD treatment in Jordan.
Material and methods
Design, sample and settings
This was a cross-sectional exploratory study. All people receiving dialysis centre-based HD treatment across Jordan were considered eligible to participate. In 2016, there were 5352 patients receiving HD treatment; 5130 were Jordanians and 222 were non-Jordanians (Al-Qaisi and Assad, 2016:34). A convenience sampling strategy was used to recruit potential participants if they were:
The sample size was calculated using G*Power to produce meaningful outcomes (Faul et al, 2007). Using a small effect size of 0.20, alpha set at 0.05, and a power of 0.80, the desired sample size was calculated as a minimum of 150 subjects. The attrition rate was compensated by recruiting 50 more participants. In total, 202 patients participated in this study. The study was conducted in different dialysis centres distributed across the four major cities in Jordan. The total number of patients in these cities is more than 4000, representing 78% of the total number of Jordanian patients with ESRD (Al-Qaisi and Assad, 2016).
Data collection procedure and ethical considerations
A covering letter with details about the study was given out to all potential participants. After obtaining written informed consent, self-reported questionnaires were distributed, together with a demographic datasheet. The study was conducted over 7 months from October 2018 to April 2019.
All appropriate ethical approvals were obtained before data collection. Potential participants were given a detailed explanation about the study and all signed a written informed consent form prior to data collection. Data were collected while patients were receiving HD treatment so that if answering the questions caused any distress, or they felt unwell, a specialist nurse or physician would be available to assist them. A password-protected computer was used to store collected data and all participants were assigned a random identification number to ensure confidentiality. All participants were assured that participation was voluntary and that they could withdraw at any time without consequences. They were also reassured that there were no right and wrong answers. They were asked to complete the questionnaires at their own pace without any influence from others.
Measures
The socio-demographic data included information about age, sex, level of education, income, employment status, marital status and previous medical history. Arabic versions of valid and reliable scales to measure hope and QoL were used.
Hope
The Arabic version of the Herth Hope Index (HHI) was used (Herth 1990). The HHI is a self-reporting scale comprising 12 items scored using a 4-point Likert-type scale (1=strongly disagree to 4=strongly agree). It was designed to be used in the clinical setting with acutely, chronically and terminally ill adults. Scores can range from 12 to 48, with higher scores indicating higher levels of hope (Herth, 1992). Herth (1992) reported internal consistency of 0.89 to 0.97 and a test–retest reliability coefficient of 0.91 for a variety of adult patient populations. The HHI has been translated into 33 languages (Herth, verbal communication). The Cronbach's alpha coefficient of the HHI in the study was .84.
Quality of life
The Arabic version of the World Health Organization (WHO) Quality of Life Questionnaire (WHOQOL-BREF) was used (WHO, 1996). It consists of 26 items rated on a 5-point Likert-type scale. Four domains calculated for these items included physical health, psychological health, social relationships and environment (WHOQOL Group, 1998). The score of each domain is calculated by adding up the domain-related items and then scores for each domain are calculated on a scale ranging from 0 to 100, in which high scores indicate a better QoL (WHO, 1996). The questionnaire demonstrated good internal consistency (Cronbach's alpha ranged between 0.66 for domain 3 (social relationships domain) and 0.84 for domain 1 (physical domain) and good discriminant validity (WHOQOL Group, 1998). The Arabic version of the WHOQOL-BREF has been used previously with many Arabic-speaking populations and demonstrated good internal consistency, reliability, and validity (Al Sayah et al, 2013). In the present study, Cronbach's alphas were 0.89, 0.84, 0.79, and 0.84 for the physical, psychological, social relationships, and environmental domains of QoL, respectively.
Data analysis
The data was analysed using SPSS version 24 with a significance level of 0.05. Descriptive statistics were used to describe the demographics and the clinical characteristics of the sample as appropriate to the level of measurement (mean ± standard deviation for continuous variables and number and percentage (n, %) for other categorical variables). Subjects who had completed data on the main study variables (Hope and QoL) were included in the analysis (202 out of 225) and, thus, there were some missing data on demographic variables as described in the related table presented in the results section.
The levels of hope and QoL were described as mean and standard deviations. Respondents were categorised into two groups based on the level of hope, using the mean of the respondents' scores. To examine the associations between hope and QoL, the QoL scores were compared between subjects with low hope scores (below the mean) and subjects with high hope scores (above the mean) using independent sample t-tests.
Results
Socio-demographic characteristics
As shown in Table 1, the subject's mean age was 47.89 (±15.22). About two-thirds were males (62.9%) and married (67.3%). Almost two-thirds of them were not employed (67.3%) or had comorbid conditions other than ESRD (68.3%). Hypertension was the most common comorbid condition (50%).
| Characteristic | Mean ±SD or n(%) |
|---|---|
| Age (years) | 47.89±15.22 |
| Sex (male) | 127 (62.9) |
| Marital status | |
| Single | 57 (28.2) |
| Married | 136 (67.3) |
| Widowed or divorced | 9 (4.5) |
| Employment* | |
| Employed (full or part-time) | 61 (30.2) |
| Not employed | 136 (67.3) |
| Health insurance* | |
| No health insurance | 23 (11.4) |
| Public health insurance | 69 (34.15) |
| Military health insurance | 99 (49) |
| University health insurance | 2 (1) |
| History of chronic illness other than ESRD | 140 (69.3) |
| Number of chronic illnesses other than ESRD | 1.8±1.39 |
| History of hypertension | 101 (50) |
| History of diabetes | 60 (29.7) |
ESRD=end-stage renal disease; SD=standard deviation
Levels of hope and QoL
The respondents had relatively moderate levels of hope (Table 2). The overall hope scores on the HHI ranged from 15 to 42, with an overall mean score of 32.31 (±4.1). Concerning QoL, the sample had higher than the cut-off mean score of 50 for the psychological and social relationships domains (54.49±17.97 and 54.44±22.5, respectively), but not for the physical (48.32±21.14) and the environment (49.42±17.59) domains.
| Measure | Possible range | Actual range | Mean ±SD |
|---|---|---|---|
| Hope (Herth Hope Index) total scores | 12–48 | 15–42 | 32.31±4.1 |
| QOL domains (WHOQOL-BREF) | |||
| Physical health | 0–100 | 0–94 | 48.32±21.14 |
| Psychological | 0–100 | 13–100 | 54.49±17.97 |
| Social relationships | 0–100 | 0–100 | 54.44±22.5 |
| Environment | 0–100 | 6–88 | 49.42±17.59 |
SD=Standard deviation; WHOQOL-BREF=World Health Organization Quality of Life tool, brief version
Associations between hope and QoL
As shown in Table 3, respondents with low hope scores had significantly lower (poorer) scores on all domains of QoL compared with those with high hope scores (41.3 vs. 55.5; 50.9 vs. 58.1; 47.1 vs. 62; and 43.1 vs. 56 for the physical, psychological, social relationships, and environment domains, respectively, all P values were <0.01).
| Low hope scorers | High hope scorers | t-test† | P-value† | |
|---|---|---|---|---|
| QOL (WHOQOL-BREF) | ||||
| Physical domain | 41.36±19.53 | 55.56±20.39 | -5.053 | <0.001 |
| Psychological domain | 50.99±16.26 | 58.13±18.99 | -2.873 | <0.005 |
| Social relationships domain | 47.18±21.4 | 62±21.19 | -4.942 | <0.001 |
| Environment domain | 43.1±16.16 | 56±16.65 | -5.584 | <0.001 |
WHOQOL BREF=World Health Organization Quality of Life tool, brief version
Discussion
Given the rising prevalence of ESRD in Jordanians, it was imperative to study the factors related to this patient population's QoL. To the authors' knowledge, this study is the first in Jordan that explored the levels of hope among individuals with ESRD receiving HD and aimed to assess the associations between hope and QoL. The sample was drawn from a patient population that represents 78% of the total number of Jordanian patients with ESRD (Al-Qaisi and Assad, 2016). It was evident from the results that participants in this study had moderately elevated levels of hope and QoL. High levels of hope among individuals protect them against depression and anxiety. They develop more realistic goals and have reduced feelings of hopelessness, which can negatively affect their confidence. Consequently, they become more resistant to the effects of negative events (Rahimipour et al, 2015). In contrast, Yucens et al (2019) and Orlandi et al (2012) used the HHI in patients with chronic renal diseases and reported a low level of hope scores among their participants. These variations in the findings are interesting and worth further examination to find out the reasons behind them. However, one of the reasons for these variations between the authors' study and that of Orlandi et al (2012) might be because the patients in the present study had an average age of 47 years, compared with an age range of 67 to 73 years in Orlandi et al's (2012) study. The fact that participants with low hope levels achieved lower scores on the social relationship domain of QoL seems to be related to the debilitating nature of the disease that potentially disrupts the physical, psychological, and social wellness of this patient population. This was similar to what was reported in the study by Daąbrowska-Bender et al (2018), where individuals undergoing HD for ESRD experienced various physiological and psychological limitations that negatively influenced their overall wellbeing. Moreover, the authors' finding indicates that the negative impact of the disease manifested in the high percentage of unemployment (67%) among this sample population. This was similar to what has been reported in another study representing other populations with ESRD receiving HD (Hallab and Wish, 2018).
Findings supported an association between hope and QoL. It was shown that increased levels of hope were associated with an improved perceived QoL. Similar results were reported in the literature where higher levels of hope led to improved coping among individuals with ESRD and treated with HD (Taheri-Kharameh, 2016). Rahimipour et al (2015) reported that achieving higher levels of hope following hope therapy predicted reduced psychological distress represented in depression, anxiety and stress among individuals with ESRD treated with HD. Therefore, the results of the present study seem to support the notion that hope might help in reducing psychological distress, which may improve QoL among this patient population (Yucens et al, 2019). It is noteworthy that, among individuals with other chronic diseases, using hope intervention therapies as a learned coping strategy proved successful in reducing psychological distress. Examples were among individuals with multiple sclerosis (Khodabakhshi-Koolaee et al, 2017), diabetes mellitus (Ghazavi et al, 2018), and cancer (Tamadon and Askari, 2015). Therefore, using hope therapy seems a useful intervention for individuals with ESRD treated with HD to positively influence their coping with their condition. Research aiming to positively influence coping among individuals with ESRD receiving HD in Jordan should focus more on adopting hope as an intervention to improve patients' overall health outcomes and, in particular, their QoL.
Implications for practice
Nurses play a vital role in the care of patients receiving HD treatment. The study's findings imply that patients' QoL could be improved in those who have a high level of hope. Hence, frequent assessment of hope among those patients might be beneficial in terms of interventions that could be implemented in the dialysis units. Nurses should incorporate the assessment of hope as part of their formal routine care for patients on HD. To do so, nurses can ask questions, including open-ended questions about patients' level of hope, source of hope, factors that may influence their hope level, and how hope can affect their lives and their health outcomes. Nurses also have the responsibility to encourage, promote and instil hope among their patients. Thus nurses can play an important role in fostering hope among their patients. Jahromi et al (2016) suggested that providing education for HD patients, and finding a suitable method of following up those patients, may improve the level of hope among them. Health professionals, including nurses, are advised to reassure individuals about their condition and treatment and emphasise the positive side of their condition as a method of improving hope. However, false assurance needs to be avoided as it may have a negative impact on the patients (Scanlon, 1989). Some of the activities that might be used to promote hope in terminally ill patients according to Scanlon (1989) include frequent hope and psychological assessment, providing emotional support, setting healthcare-related goals and priorities, and teaching and creating an environment that maximises self-worth and human potentials. Lastly, nurses can improve the level of hope in HD patients by establishing supportive relationships with them, reassessing perceived challenges or conditions causing stress and seeing these as opportunities for improvements. They could also help by supporting patients to focus on their current life and not to worry about the future, as well as help with establishing appropriate expectations and achievable goals, and discussions about spiritual practices and activities.
Limitations
This study was limited by the cross-sectional design used and the convenient sampling strategy. More research using various research methodologies (eg randomised controlled trials or experimental studies) to examine hope and its association with QoL is needed. However, the study was conducted and recruited participants from different dialysis centres across Jordan and this may increase the strength of its findings.
Conclusion
The study shows that people receiving HD treatment in Jordan had moderate levels of hope. The study also sheds light on the importance of the concept of hope in its potential relationship with the QoL of this population. The results showed that QoL could be improved by improving the level of hope. Thus, nurses need to regularly assess hope in this population and intervene accordingly. Future studies on these relationships especially interventional studies are warranted.