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Hemodialysis Stressors and Coping Strategies Among Jordanian Patients On Hemodialysis: A Qualitative Study Eman Al Nazly Muayyad Ahmad

Carol Musil Manar Nabolsi

hronic kidney disease (CKD) is life-threatening. When the kidneys do not function sufficiently, patients with Stage 5 CKD have three choices of therapy: hemodialysis, peritoneal dialysis, or kidney transplantation (Crawford & Lerma, 2008). In Jordan, CKD has been growing rapidly in recent years. The most recent statistics in 2010 indicated an estimated population of Jordan of six million, with more than 577 people per million receiving hemodialysis – an increase from the previous year of 1.1% (Tarawneh & AlQaisi, 2011). Patients on hemodialysis experience physiological stressors that include fatigue, reduced mobility, hypotension, muscle cramps, nausea, and vomiting, imposing limitations and creating disruption of daily life (Kaze et al., 2012). In addition, patients often experience many unique daily stressors, such as fluid and food intake restrictions, limitations on physical activities, functional impairment, scheduling problems secondary to dialysis sessions, and employment

C

Eman Al Nazly, PhD, is an Assistant Professor, Amman Alahliah University Nursing School, Amman, Jordan. She may be contacted directly via e-mail at [email protected] Muayyad Ahmad, PhD, RN, is a Professor, Faculty Member, and Dean, University of Jordan Nursing School, Amman, Jordan. Carol Musil, PhD, RN, FAAN, is a Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH. Manar Nabolsi, PhD, RN, is an Assistant Professor and Faculty Member, the University of Jordan Nursing School, Amman, Jordan. Statement of Disclosure: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education activity. Note: Additional statements of disclosure and instructions for CNE evaluation can be found on page 328.

Nephrology Nursing Journal

Continuing Nursing Education

Copyright 2013 American Nephrology Nurses’ Association Al Nazly, E.A., Ahmad, M., Musil, C., & Nabolsi, M. (2013). Hemodialysis stressors and coping strategies among Jordanian patients on hemodialysis: A qualitative study. Nephrology Nursing Journal, 40(4), 321-327. The aim of this study was to examine the lived experiences of Jordanian patients with chronic kidney disease who received hemodialysis. Qualitative interviews were conducted to identify patients’ lived experiences. Transcripts analyzed led to seven common themes: lifestyle change, time wasted, symptom-related suffering, marital and family role disruption, religious commitment disruption, motivators to alleviate stressors, and experience of healthcare providers’ support. Findings revealed areas where nurses and other healthcare providers can improve care for this patient population and for patients with other chronic illnesses. Key Words: Chronic kidney disease, coping, hemodialysis, stressors.

Goal The purpose of this study was to explore patients’ lived experiences with hemodialysis in Jordan. Objectives 1. Discuss two stressors among Jordanian patients on hemodialysis. 2. Determine the coping strategies employed. 3. Correlate the stressors and coping strategies of Jordanian patients on hemodialysis to patients on hemodialysis in the United States.

problems (Takaki et al., 2005). A review of the literature showed few substantial qualitative research studies on patients’ lived experience with hemodialysis (Bayhakki & Hatthakit, 2012). Given the rising prevalence and incidence of Stage 5 CKD in Jordan, the need continues for studies that describe patients’ subjective experiences of living each day with this chronic and debilitating illness. Understanding what these daily challenges mean

to patients and how they impact the daily lives of patients on hemodialysis are important to nephrology nurses and other healthcare professionals who provide direct care for patients on hemodialysis. Thus, this study will add to existing nursing science knowledge of the person as a focal point of nursing care development. Because of the daily challenges patients on hemodialysis experience, understanding the challenges is essen-

This offering for 1.4 contact hours is provided by the American Nephrology Nurses’ Association (ANNA). American Nephrology Nurses’ Association is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center Commission on Accreditation. ANNA is a provider approved by the California Board of Registered Nursing, provider number CEP 00910. This CNE article meets the Nephrology Nursing Certification Commission’s (NNCC’s) continuing nursing education requirements for certification and recertification.

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Hemodialysis Stressors and Coping Strategies Among Jordanian Patients on Hemodialysis: A Qualitative Study

tial for nurses working in dialysis, as is especially understanding how patients cope with stressors. To address this need, a qualitative methodology from the phenomenological tradition was used to answer the following question: What is the lived experience of patients with CKD who receive hemodialysis? Themes that emerged from this qualitative study can provide nurses with guidance to incorporate the symptoms into nursing assessments and plans of care.

Literature Review Common Stressors for Patients On Hemodialysis Recent studies have used qualitative methods to gain insight about the experiences of patients living on dialysis. In various ways, these studies have pointed out that dialysis treatment imposes many challenges and difficulties for patients and their families, who often require new and different ways of coping. Lifestyle is markedly impacted by the complex therapy, and such experiences require patients to adapt to a new way of living (Curtin, Bultman, ThomasHawkins, Walters, & Schatell, 2002) Several qualitative studies have examined hemodialysis stressors. Studies have described how treatments impact the time and freedom available. Hagren Pettersen, Severinsson, Lutzen, and Clyne (2001) described Sweden patients’ experiences of suffering from CKD and found that patients on hemodialysis suffered from managing a restricted life, loss of freedom, and dependence on the caregiver. In a recent hermeneutical phenomenological study conducted in Ireland, patients described the experience of waiting before, during, and after treatment as “killing time” and “wasting time” (Moran, Scott, & Darbyshire, 2009). Another qualitative study by Hagren et al. (2005) identified common themes on how illness and treatment encroached upon time and restricted life. The above qualitative studies described patients’ experience of a life restricted.

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Further, Kaba et al. (2007) employed a grounded theory approach to explore problems experienced by patients on hemodialysis in Greece, and pointed out that cultural traditions may influence patients with CKD in both negative and positive ways. For example, dining out and sipping wine with friends are important parts of the Grecian lifestyle, and dietary and fluid limitations drastically changed patients’ lives. Grecian patients on dialysis realized they could not easily visit taverns and socialize with friends the same as they had before CKD because of dietary and fluid restrictions. The positive aspects of the culture, however, especially strong bonds among family and friends, provided patients with the emotional support they needed or even helped them comply with treatment regimens. Thus, the reviews of hemodialysis stressors provide a basis for understanding the subjective experiences of receiving hemodialysis and the importance of cultural context, and thus, the need to explore the experience of Jordanian patients receiving hemodialysis.

Purpose of the Study The purpose of this study was to explore patients’ lived experiences with hemodialysis. The focus was directed toward capturing and documenting stressors and coping strategies among patients on hemodialysis. The secondary purpose was to identify the importance of family and faith in shaping the patients’ perceptions. This was achieved through openended questions that allow probing to capture more data from patients.

Research Design The study utilized qualitative descriptive phenomenology to explore the lived experiences of patients with CKD receiving hemodialysis, especially the stressors they experienced and the coping strategies they employed. Descriptive phenomenological research utilizes a methodological framework that answers research

questions through a scientific description of the experiences (Dowling, 2007). A purposive sample of nine patients was selected from outpatient dialysis units in Amman/Jordan. Sampling in qualitative research is generally small and would provide saturation. Prior to hemodialysis treatment, potential patients were approached to participate in the qualitative study. Patients who expressed interest were invited to participate. The first nine volunteers meeting all criteria were invited to participate. Criteria for selection of volunteers required each participant to be a) on hemodialysis for at least six months, b) currently receiving hemodialysis a minimum of 10 hours a week, c) at least 18 years of age, d) able to read and write in Arabic, and e) capable of giving consent. The thematic and probe interview questions were as follows: • What are the physical symptoms you have experienced being on dialysis? • What are the daily life restrictions you have experienced due to hemodialysis? • How have you coped with hemodialysis? • Can you tell me more about your faith and coping? • Has your family played a role in daily hemodialysis challenges? • When you say, “my family is helping me out,” please explain that.

Data Collection Patients who agreed to participate in the study were informed about the purpose of the research and had received a consent form and the participants’ demographic characteristics questionnaire. The principal investigator conducted face-to-face interviews (Creswell, 2008) with the nine participants separately on the day of dialysis and prior to the hemodialysis session in a private area in the dialysis unit. The confidential interviews were audio-taped and transcribed by the main investigator. During the interviews, probes were used to obtain

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additional details. All interviews lasted between 40 and 60 minutes and were completed over a 15-day span during July 2010. The study was approved by the Graduate Faculty Board and Ethical Committee of the University of Jordan, and the researcher also received permission to conduct the study from hospital management.

Table 1 Demographic Characteristics of Participants

Gender Male

4

Female

5

Age (years)

Data Analysis

Mean

Colaizzi’s (1978) seven steps were followed: 1) The principal investigator read and reread each participant’s transcript to identify lived experiences on hemodialysis as a whole; 2) Each transcript was examined for statements and phrases that pertained to the phenomena studied, and major statements were extracted from the descriptions; 3) Meanings were formulated from the transcripts to shed light on statements hidden in different contexts about the phenomenon; 4) The formulated meanings were aggregated and organized into theme clusters to identify the experiences common to all participants; 5) The principal investigator integrated the themes into a comprehensive description of the lived experiences of the participants; 6) The researcher formulated a concise statement based on the exhaustive descriptions, which led to discovery of patients on hemodialysis lived experiences; and 7) A final validation was sought from the research participants, which was achieved by returning to them and asking if the descriptive analysis was congruent with their lived experiences. None of the participants disagreed with the researchers. A member of the research team reviewed and compared the transcripts both to verify the emergent themes and confirm that the statements were based on transcribed study data rather than on the researcher’s preconceptions. Ongoing data validation occurred as the investigator met with participants and reviewed their transcripts, as well as kept an ongoing summary record of her perceptions of the interviews. All agreed that meanings and themes were representative.

Range 20 to 69

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Patients (N = 9)

Variable

47 9

Average Years of Dialysis

3

Level of Education High school

4

University and graduate degree

5

Marital Status Single

1

Married

7

Widowed

1

Employment Status Employed

2

Retired

1

Housewife

5

Unemployed

1

Results Demographic Characteristics The nine participants had an average age of 47 years. Ages ranged from 20 to 69 years. As shown in Table 1, four participants were male, and five were female. Participants’ educational levels included five with bachelor’s degrees and four with a high school education. Seven participants were married, one was single, and one was widowed. Time on dialysis ranged from one to five years. Two participants were employed, five were housewives, one was retired, and one was unemployed.

Qualitative Data Analysis Statements pertaining to hemodialysis-related stressors and coping

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mechanisms were extracted from the data, and seven major themes emerged.

Lifestyle Change All participants explained that hemodialysis made it hard for them to travel even short distances unless they arranged to have dialysis in the place they visited. The younger and working participants were more affected by the restraints of movement while on hemodialysis. As one participant explained, “I have a daughter who lives abroad, and it is hard to visit with her even a couple of days. If I want to be treated there for my dialysis, it will be very expensive.” Food and fluid restrictions were reported by participants as a dialysisrelated stressor, and some also reported continuous attempts at compliance

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Hemodialysis Stressors and Coping Strategies Among Jordanian Patients on Hemodialysis: A Qualitative Study

to avoid any life-threatening side effects. As one said, “One of the hardest things that come with this illness is fluid restriction, I am always thirsty.” Most participants indicated that with the passage of time, they became more used to the fluid and diet restrictions.

and I used to eat it a lot, but now things are different, and I can’t enjoy it as much.” Most patients complained of needle sticks. A 56-yearold participant said: “Sticks are painful; I can’t get used to them. I feel tortured while they put dialysis needles in my arm.”

Time Wasted

Marital and Sexual Function

In addition, participants explained that dialysis hours are time-consuming and tiring even though it prolonged their lives. One participant explained how being on hemodialysis for four hours three times a week, plus the time in transportation, is a waste of time: “At least 60% of my time is wasted on dialysis; this includes 2 hours of transportation to the dialysis unit and back, and 3 to 4 hours of treatment. By the time I get home, I am exhausted, and my whole day is gone because I need to just rest… The day of dialysis, I can’t do anything or visit with my family or friends; just rest and sleep… I barely attend any social events, such as weddings or dinners at my children’s homes.”

Many participants, both male and female, explained how their disease and treatment decreased their sexual interest and behavior, which they generally accepted. As a male participant explained: “Within the last eight months, I have experienced such a low sex drive. It isn’t really about having sexual intercourse, it is more that I do not feel good about myself, and I do not feel that my wife is attracted to me anymore.” A female participant expressed sexual dysfunction in her marital relation, saying: “Since my dialysis, I have felt a huge loss of sexual desire.”

Suffering from the Symptoms Participants reported food and fluid restrictions as part of hemodialysis treatment stressors, although some reported continuous attempts at compliance to avoid any life-threatening side effects. “After I get home from my dialysis,” one participant said, “I am very worn out, and I feel so weak. I have no energy to do anything, and I get very bad headaches, cramps all over my body, and sometimes, I get nauseous. I can’t even stand nor do anything for my family.” Another participant who complained of fluid restriction said: “Drinking tea is a huge part of my culture, and we drink tea in the morning, afternoon, and even at night. Even though I love tea, I barely drink it, and I really miss it. Another food that is hard for me to avoid is mansaf (cooked dry yogurt). This is a popular among the Arab culture, but it is very salty and makes one very thirsty, so I have to limit my intake. Mansaf was my favorite dish,

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Job and House Chores Restrictions The male clients reported that their physical symptoms negatively affected their ability to keep their jobs or necessitated that they switch to another job. Some issues related to jobs were revealed in statements such as one by a 50-year-old lecturer and trainer: “I can’t work as before because of the dialysis sessions, I stopped traveling, and I can’t be away more than a day.” Another 39-yearold participant explained: “Due to hemodialysis sessions, I can no longer work long hours like I used to. I was the head of my department, but now I am just an ordinary employee.” Another issue that emerged while interviewing female participants was the concern about house chores. However, participants relied on spouses and siblings for help with house chores and transportation to and from the dialysis unit, and discussed with them the difficulties associated with hemodialysis. House chores were best expressed by a 47year-old female who said: “I used to do house chores and drive my kids to

school. Now I cannot do that anymore. My daughters and husband do most of the work, especially on dialysis days.” It is notable that they were still performing their role as mothers and doing house chores with help from the daughters.

Disruption in Religious Commitments Keeping a strong religious foundation was an important part of participants’ lives, but their dialysis routines sometimes made it is difficult for them to keep up with their religious commitments. As a 39-year-old male participant explained: “I used to visit Makkah and perform religious duty (Omrah) every year, but since I started dialysis, I can’t go. A lot of arrangements have to be made to guarantee dialysis treatment in another country.” Similarly, a 64-year-old female participant said: “I wasn’t able to go to Makkah to do Omrah when I started dialysis. Later, I was told I can arrange to have dialysis in Makkah if I plan to go to do Omrah. I took this chance and made the most of this opportunity, so I went last year.” Another religious issue that concerns the patient on dialysis is fasting during the holy month of Ramadan. Many patients who attempted to fast a couple of days felt it was very hard for them, they could not continue, and they were missing the fast. A 59year-old male said: “I tried to fast a few days in Ramadan, but most days I couldn’t fast… I cannot see myself not performing my basic religious duties.”

Religion and Family As Strength Regarding coping strategies used by participants to deal with stressors of the hemodialysis treatment, all explained that their faith and belief in God helped them to deal with their condition. Participants expressed this coping strategy with statements such as the following: “I am a firm believer in God, and I see this as a test from God that I need to pass in order to get closer to him. I read the Holy Quran daily, especially during the holy

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month of Ramadan. Today, I read a part of the Holy Quran before I came for my treatment… I convinced my kids that this is a test from God, and the believer should pass this test and accept God’s will.” Another participant said: “Praying and asking for God’s help allows the person to feel as if God has a protective circle surrounding him.” “My relation with God has increased, I don’t miss any prayer time, and I pray when I am emotionally upset or when I can’t sleep.” “Faith in God and the support of my children made me cope with my condition.” In addition to religion, participants related how they had continued to draw strength from family members, which they considered important for helping them deal with their disease. A 56-year-old male participant said: “Dialysis stressors are high. Sometime I have to quit the session because my blood pressure drops, I go home tired and feel miserable. My family educated themselves about such situations and used available recourses in this unit to deal with these issues. Without them, I would quit dialysis long time.”

Experience of Healthcare Providers’ Support Patients on hemodialysis spend at least 10 to 12 hours a week in the dialysis unit, and are constantly in contact with different healthcare providers, particularly nurses. To reduce stress in their lives and accurately treat and support them throughout this difficult process, a strong doctor-nurse relationship is required. A male participant described his relationship with and expectations from the nursing staff as follows: “The nurses are very supportive. There is a young nurse who cracks jokes and makes me laugh. The nurses can help a lot in making the patients less anxious about their condition by creating a high-spirited environment; then procedures become accepted and less of a routine.” While participants appreciated the efforts of the healthcare team, they felt there could be a lot of

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improvement in this area to more efficiently help patients on hemodialysis. As a male participant stated: “Although they do their job and ask the patient how they are doing and things like that, there still needs to be more effective communication. Many patients feel that nurses need to be more like friends and treat them as humans, not as robots with their daily routines.” Frequent dietary consultations should be included in the education of patients with CKD, and nurses should remind patients to follow the kidney diet because it could seriously affect the life of patients on hemodialysis. As a 29-year-old said: “Nutritional information should be explained thoroughly to patients on hemodialysis many times so they know the importance of adherence to the dietary restriction.”

Discussion Hemodialysis Stressors Consistent with recent research findings (Bapat, Kedlaya, & Gokulnath, 2009; Hagren et al., 2005; Harwood, Locking-Cusolito, Spittal, Wilson, & White, 2005; Kaba et al., 2007), the open-ended interviews revealed both physiological and psychosocial stressors. The most relevant themes included lifestyle changes, role disturbances, time spent in hemodialysis, withdrawal from social life, and suffering from physiological symptoms. Participants felt the physiological limitations were obstacles to participate in social activities that they enjoyed. Other comments regarding physiological limitations included pain from needle sticks and feeling fatigue and dizziness after hemodialysis sessions. The study illustrated how physiological changes patients had experienced as the result of hemodialysis treatments, such as fatigue, lack of energy, and muscle cramps, restricted the lives of participants. Patients in this study described how they slowed down participation in family and social events that they enjoyed taking part in before. The behavior of patients on hemodialysis is similar to

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that of patients with other chronic illnesses, which have been described by Lubkkin and Larsen (2013) and Holley (2007). Slipping away from social contact is considered a consequence of chronic illness. Male participants expressed concern regarding their jobs. Some were unable to keep their jobs, while others who could work tended to pick up part-time jobs that involved easier tasks. This finding is consistent with Moke, Lai, and Zhang (2004), who also found that patients were concerned about keeping their current jobs. The Jordanian society presumes the male is in charge of providing income to the family, and therefore, this is a major threat not only to the patient, but to his family as well.

Coping Participants relied on God to help them cope with day-to-day hemodialysis-related stressors, as revealed by the open-ended interviews. They frequently reported they rely on God to give them the strength needed to cope with hemodialysis stressors as well as to improve their health. These findings support those reported by Cinar, Barlas, and Alpar (2009) and Sakhaei and Radfar (1999). They concluded that the coping method most utilized by patients experiencing hemodialysis-related stressors was faith in God and religions, which allows patients to understand their difficult circumstances and guides them through the healing process. Relying on support from family and friends was another coping method participants most frequently reported in the open-ended interviews. The finding is consistent with that of Moke et al. (2004), who identified the method of coping called “relation-focused coping,” which refers to support that patients receive from family and friends. For example, participants relied on spouses and siblings for help with housekeeping and transportation to and from the dialysis unit, and discussed with them the difficulties associated with hemodialysis. Although in Jordanian society it is

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Hemodialysis Stressors and Coping Strategies Among Jordanian Patients on Hemodialysis: A Qualitative Study

customary for family members to support each other, participants expressed the feeling that they did not want to be a burden. The overarching theme was that “healthcare providers are sources of support, but still more needs to be done.” Despite their need for support, participants preferred to ask for it only when they greatly needed help. The support from others when needed and their religious faith were the major coping mechanisms participants relied on to deal with the complicated issues related to chronic disease and its treatment.

Study Limitations Our qualitative study of nine patients undergoing hemodialysis was one of the first in the Middle East to explore the stresses and coping strategies of individuals experiencing hemodialysis. Although results of this study cannot be generalized to other populations, they do provide healthcare professionals with important information about this group’s lived experiences and needs.

Implications for Clinical Practice The study indicated the difficulty patients have in dealing with physiological stressors, such as fatigue and tiredness, both during dialysis and between dialysis days, which decrease their activities and functional status. Thus, it is important during clinical assessments to include questions regarding fatigue and activity level, as well as to allow patients to express their feelings in this regard. Additionally, prayer and religion are ways of coping among this group. Nurses can discover and support the uniqueness of each individual’s or community’s belief patterns and what each finds meaningful.

Recommendations and Implications for Future Research Because the interviews showed that research participants depended on family support, relevant institutions should try to raise society’s awareness of hemodialysis treatment

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and associated stressors, and educate health professionals about the importance of family support. Three treatment modality options are available to patients with Stage 5 CKD. These include hemodialysis, peritoneal dialysis, and kidney transplant. Other studies have indicated many benefits of home dialysis to patients, including flexibility in dialysis schedules, convenience of the home environment, more time spent with family, patient independence, and control over personal treatment (Harwood & Leitch, 2006). Home dialysis treatment, including peritoneal dialysis, is widely used now in United Stated. It is proven to be a safe and effective alternative to hemodialysis (Peters, 2013). Thus, it is recommended that administrators and policy makers introduce home dialysis to Jordanian patients with CKD when kidney transplant is not feasible or while they are waiting for transplantation. Patients in this study brought up concerns about unemployment, reducing hours of work, and quitting work after starting hemodialysis. Thus, this concern needs social support and the attention of the policy makers because previous studies of employment have often been used as coping strategy. The literature review for this study identified no previous research on the lived experiences of Jordanian patients with CKD who were receiving hemodialysis. Future research is recommended, therefore, to include a more diverse sample that reflects the Jordanian CKD population.

Summary In this study, the phenomenology of lived experience identified common meanings and themes associated with hemodialysis stressors, and it identified the need for healthcare providers of dialysis to be aware of this population’s needs. Additionally, this study supports the need for nurses to intervene in assessing and educating patients on hemodialysis.

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Holley, U.A. (2007), Social isolation: A practical guide for nurses assisting clients with chronic illness. Rehabilitation Nursing, 32, 51-58. doi:10. 1002/j.2048-7940.2007.tb00152.x Kaba, E., Bellou, P., Iordanou, P., Andrea, S., Kyritsi, E., Gerogianni, G., … Swigart, V. (2007). Problems experienced by haemodialysis patients in Greece. British Journal of Nursing, 32(14), 868-872. Kaze, F.F., Ashuntantang, G., Kengne, A.P., Hassan, A., Halle, M.P., & Muna, W. (2012), Acute hemodialysis complications in end-stage renal disease patients: The burden and implications for the under-resourced SubSaharan African health systems. Hemodialysis International, 16, 526531. doi:10.1111/j.1542-4758.2012. 00692.x Lubkkin, I., & Larsen, P. (Eds.). (2013). Chronic Illness: Impact and intervention (8th ed.). Burlington, MA: Jones & Bartlett Learning. Moke, E., Lai, C., & Zhang, Z.X. (2004). Coping with chronic renal failure in Hong Kong. International Journal of Nursing Studies, 41(2), 205-213. Moran, A., Scott, P.A., & Darbyshire, P. (2009). Existential boredom: The experience of living on hemodialysis therapy. Journal of Medical Ethics: Medical Humanities, 35(2), 70-75. Peters, A. (2013). Supporting and retaining nephrology nurses new to the peritoneal dialysis specialty. Nephrology Nursing Journal, 40(1), 21-23, 27. Sakhaei , S.H., & Radfar, N. (1999). A survey of stressors and coping methods in hemodialysis patients in Madany Hospital of Khoy in west Azarbayjan Province [Abstract]. Retrieved from http://umsu.ofis.ir/default.aspx Takaki, J., Nishi, T., Shimoyama, H., Inada, T., Matsuyama, N. Kumano, H., & Kuboki, T. (2006). Possible interactive effects of demographic factors and stress coping mechanisms on depression and anxiety in maintenance hemodialysis patients. Journal of Psychosomatic Research, 55(3), 217223. Tarawneh, M., & Al-Qaisi, S. (2011). Biannual report 2009-2010. Amman, Jordan: Hashemite Kingdom of Jordan Ministry of Health.

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