The 8 studies included in the synthesis were involved 94 participants. The number of participants enrolled in these studies ranged from 7(16) to 26 (29). Seven different countries were represented in the included studies including India (had two studies), Sweden, Greece, Singapore, Jordan, Thailand & United states of America. The synthesis resulted in three themes: Facing countless restrictions in life, diverse outlooks towards hemodialysis machine and seeking education and competent care from health professionals.
Facing countless restrictions in life
This feeling is echoed in all of the eight studies included in this synthesis as having physical limitations, social restrictions, financial restrictions, emotional distress, functional disturbances, and fluid and dietary restrictions. There is an actual restriction to the overall activity pattern of the individuals that made the patient’s life miserable.
Hemodialysis has a major impact on the daily life of ESRD patients. Certain symptoms such as fatigue, itching, and cramps are very common in this group of patients and numerous patients with ESRD experience impaired physical, mental, and social functioning (13). All eight studies talk about physical limitations and functional disturbances and they reported physical symptoms in different ways including decreased energy, drains energy, tiredness, fatigue, chest pain, joint pain, functional disturbances, swelling. One patient said “…when I go to dialysis, I feel with chest pain and dyspnea, my legs did not tolerate me, and I fallen down several times…”(26).
The physical limitations caused by the disease and its treatment created role dysfunction, resulting in emotional distress (29). Sexual dysfunction is one of the main role dysfunction causing emotional distress mentioned by hemodialysis patients in three of the studies (13,29,30). Valsaraj et al. (2014) used the theme “marital relationship and sexuality” to express diminished sexual interest after the onset of illness as well as demand of marital and family adjustments. One participant crying during the interview, said, ‘‘My husband is frustrated that I cannot give sexual pleasure to him. I know he has someone else (sob). It is my fault. I cannot be a good wife’’(29). On the other hand, the literatures revealed that hemodialysis patients experienced emotional distress in relation to fear and threat of death, depression, guilty feeling, loneliness, having unpredictable future, suicidal thoughts, shock, rejection of ESRD diagnosis and need for hemodialysis (16,21,26,29–31). These problems not only affect the patient emotions but also hugely disturbing normal social activities. A restricted social life is highly linked to unhappy life. It was described as being alone with existential thoughts, having lack of support from the family, being unable to fulfill normal social activities. Social restriction in terms of limitations of work, travel as well as social life is also stated in these studies. A participant said "…some people get angry because I did not go to visit them when his son got married and became sad if I refused to drink fizzy drink, they did not understand that this may kill me if I do that .Still people need time to understand what it means to have chronic renal failure"(26).
Hemodialysis patients also maintain their health by doing some restrictions on fluid and food consumptions. Dietary and fluid adherence is of crucial importance to the quality of life and survival of hemodialysis patients (13). In line with this, fluid and diet restrictions were reported in six studies (13,16,26,29,30,32) as the most stressful restrictions that adversely affects their quality of life and created social limitations. Rhoni et al. (2016) brought a theme “Unfulfilled wishes” and described as a yearning wishes that hemodialysis patients unfulfilled due to their disease and treatment. A participant stated “In any other illness, people are asked to drink more water, except in kidney failure!” “The worst part about this illness is that you can't drink water as much as you want, how can anyone control thirst… it is an innate feeling that for every human being and animals will have!”(30).
Concerns about changes in financial status is discussed in five studies (13,16,26,29,30). As a result of ESRD and its treatment, patients suffered financial crisis. The dialysis cost and other expenses of travel, food and children's education are unmanageable because many of them cannot work for a paying job. The sub theme “abounding loss” (16) voices loss ranging of physical strength to loss of job and prosperity. The restrictions experienced by patients with hemodialysis are mostly driven by the physical limitation. It remains as a major obstacle to social, role, and emotional functions as well as it has an incredible impact on the economic hardship created in dialysis patients. Patients realized how the helpless situation of financial drain made them to feel that they are enduring a constrained life. One said “When life was getting settled in a good way, I started to suffer this disease. With that, life started to shatter. I ended up with a great financial crisis. Now itself, within 6 years, I have spent nearly 10 to 11 lakh rupees for this disease”(16).
Diverse outlook towards the hemodialysis machine
Based on this review, the second theme identified is a diverse outlook towards hemodialysis machine. Of the eight reviewed articles, five reported participants view related to hemodialysis treatment and in all of these articles mixed feeling was expressed about the machine. On one hand, participants showed positive feeling for hemodialysis, accepted and appreciated the advanced technology helped to prolong their lives (26,29,30). The dialysis machine is indispensable for patients with renal failure and play a unique role as one treatment modality. Participants loved the machine and believed that it equals life and patients might have already died without the machine. They also stated that their bodies had coordinated with the machine. A participant said ‘‘Doing this (hemodialysis) is like changing the oil in a car. My body is filled with the nasty sticky oil and it needs to be washed out. I love this machine. It is my lifeline. When I enter this unit and see this machine, I automatically feel better...Because I know that as soon as I connect to it, I will be okay’’(29).
On the other hand, the machine was viewed as an intrusive for the patients preferred life style (31)(32). The time-intensive schedule and the strict adherence expected from the patient to hemodialysis treatment deprived patients from occasions to enjoy life. Patients have to go to hospital three times per week and stayed for long hours to have hemodialysis therapy which make them to feel tied to a machine. One said “It is horrible to be tied to a machine for five long hours… time just stay still… nothing can be done, can't move or sleep… why can't they reduce the time to three or four hours?”(30). Some patients also feel hemodialysis as the cause of several symptoms like apathy, tiredness, cramps, hypotension, and drowsiness, fatigue, and vertigo. These problems occurred due to the ongoing nature of the dialysis therapy and its often-unpredictable complications which made survival very difficult. A participant stated "…I go home apathy and very tired after the hemodialysis session. And only I need to sleep in my bed until the second day. …this dialysis made cramps, hypotension and drowsiness"(26). However, effective management of ESRD depends on the individual’s devotion with a complex, critically important therapeutic regimen (33) and patients having positive outlook will have better quality of life.
Seeking education & competent care from health professionals
The final synthesized theme was seeking education and competent care from health professionals. In five of the studies hemodialysis patient reflected on the need of education, care and support from health care providers (26,29–32). They seek information regarding the disease and the hemodialysis machine including medical advances in the direction of kidney replacement. Even though patients agreed that the health professional’s helped them during the hemodialysis session; they teach them, and provide them with psychological support, they still have concerns on the need of education and competent care to cope with the disease and the manner of treatment. A patient noted “Need more education out there. They always talking ‘bout cancer and all this other stuff, but nobody really talks about dialysis. They’ll brush over diabetes, but they just never give you the complications of it”(32). Participants indicated how important it was to be welcomed, communicated and obtained appropriate care from healthcare professionals. The feeling of trust developed as the patient realized that the necessary care & support were given by the professionals. One said ‘‘doctors, nurses, and staff here are good to me. This place is my second home. Being here, I can sleep without worrying about anything because I know they will take good care of me’’(29). They believed that the experience and competency of the staff matters even some admired certain staff skills in inserting needle comparing to others.