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Abstract

Introduction

Dialysis is a long-term treatment for chronic kidney failure. Family caregivers play a significant role in the care of patients undergoing dialysis. The quality of life (QoL) of family caregivers is related to the quality of care provided to patients undergoing dialysis.

Objectives

This recent literature review aimed to synthesize the QoL experienced by caregivers of family members undergoing dialysis.

Method

This literature review employed four online databases, including SCOPUS, PubMed, ScienceDirect, and Web of Science. The extracted articles were further screened on the basis of the PRISMA guidelines. In this review, articles were selected on the basis of the following eligibility criteria: double-blind peer-reviewed articles, articles written in English language and published between 1 January 2013 and January 2023. This review used thematic synthesis.

Results

Four analytical themes emerged, including physical capacity, social relations, psychological state, and environment. All of these themes correspond to the dimensions of QoL.

Conclusion

The QoL of family caregivers of patients undergoing dialysis must be considered. A good QoL of these caregivers will improve the balance of life and further increase the ability and quality of care they provide for family members undergoing dialysis.

Keywords

Quality of life dialysis family caregiver

Introduction

Chronic kidney disease (CKD) kidney disease impacts patients, health workers, families, and the social environment. The impact of dialysis costs including costs of the dialysis process, medicine and transportation on patients and families is very high. The risk of dialysis irregularities is related to the costs incurred (Toure et al., 2022). A previous study showed that the majority of 300 families in Iran who participated in the care of patients with CKD had a poor quality of life (QoL; Sajadi et al., 2021). The QoL of family caregivers is related to the burden of taking care of the member while undergoing dialysis (Farzi et al., 2019). A study conducted in Indonesia exploring the QoL of 57 families who participated in the care of family members undergoing dialysis reported that the QoL of the caregivers was poor (Vina, 2022).

The family is the most significant informal care provider for patients with CKD. In addition to patients, families should receive attention owing to problems encountered in supporting patients undergoing dialysis (Adejumo et al., 2019). The problem encountered by families because of the long-term treatment of patients with CKD undergoing dialysis is QoL disturbances. QoL disturbances in family caregivers of patients with CKD include anxiety and physical fatigue (Adejumo et al., 2019). Patients with CKD undergoing dialysis require comprehensive care from their families. The QoL of a family caregiver is a subjective feeling experienced owing to the burden of caring for a sick family member. In this review, the caregiver's QoL dimension includes physical capacity, social relations, psychological state, and environment (Martin et al., 2021).

The supportive needs of patients undergoing dialysis are categorized into two, including external and internal components. The internal components are patient factors, disease and treatment, whereas the external components are personal living circumstances, health system and socioeconomic aspects (Nikkhah et al., 2020). The family is the most significant support in meeting these supportive needs. The impact of the long-term care of patients undergoing dialysis will affect the QoL of the family caregiver. Various factors related to the QoL of family caregivers include family, patients and health service factors (Hejazi et al., 2021).

Several studies on the QoL of family caregivers of patients undergoing dialysis have been conducted using quantitative methods. However, exploring similar studies using qualitative methods is also necessary. Studies on the QoL of the family caregiver emphasize existential matters, including the process of knowledge, the meanings constructed, and the opening of shared knowledge spaces between researchers and participants. Qualitative research can explain details in accordance with quotes from participants (Tonon, 2015).

Existing reviews discuss the QoL of patients and health workers in CKD cases (Kefale et al., 2019). No reviews on the QoL of family caregivers of patients undergoing dialysis employing a qualitative research design have been conducted. The QoL of family caregivers is essential to investigate because family caregivers are an important support system for patients with CKD. Therefore, to synthesize studies with qualitative research design concerning the QoL of family caregivers of patients undergoing dialysis, a review was recently conducted. In this review, only qualitative research articles were reviewed. This review aimed to synthesize qualitative studies concerning the perspective of family caregivers on patients undergoing dialysis, which is part of the QoL. This can support the improvement of interventions to improve the QoL of family caregivers of patients undergoing dialysis.

Method

Design

This study was conducted through a literature review.

Review Questions

The question raised in this review is how the QoL of family caregivers of patients undergoing dialysis is.

Eligibility Criteria

The PRISMA guidelines were used as a reference for this review (Figure 1). The guidelines used were based on (Page et al., 2021). The following were the inclusion criteria: (a) the population was limited to the caregiver of a family member, (b) studies that employed a qualitative research design, (c) articles concerning the perspective of family caregivers of patients undergoing dialysis, and (d) articles with peer-reviewed criteria published between January 2013 and January 2023 and written in English.

Figure 1.

PRISMA Diagram of the Article Selection Process.

Search Strategy

Four online databases including SCOPUS, PubMed, ScienceDirect, and Web of Science were searched. Furthermore, three keywords were emphasized in the search strategy, including “family caregiver,” “dialysis,” and “quality of life.” In this review, keywords were paired and combined to search the database for relevant literature. Keywords and their derivatives refer to Medical Subject Headings.

Study Selection Based on the PRISMA Diagram

The initial search obtained 1,023 articles, 228 of which were identified as duplicates and deleted in the first stage. Titles were subsequently filtered and 166 publications whose titles did not match the research objectives were removed. Based on the abstract, 144 articles were discovered, with most being deleted because the main research result was not concerning the QoL of family caregivers. Furthermore, after the screening process, 39 articles were deemed potentially eligible. The full text of each selected study was subsequently carefully reviewed and 28 publications were omitted after the final review. Meanwhile, the following were the exclusion criteria: (a) the QoL is not the primary outcome (n = 7), (b) full text is not available (n = 9), (c) study participants are not family caregivers (n = 7), and (d) written in languages other than English (n = 5). Finally, 11 publications met the inclusion criteria and were deemed eligible for further analysis (Figure 1).

Research articles that met the inclusion criteria were examined by critical appraisal. Critical appraisal is a method for ensuring that the research being reviewed is free from significant methodological problems that could affect the quality of the review Table 1. In this review, the recommended research article assessment instrument is the Critical Appraisal Skills Programme (Butler et al., 2016). All primary studies were included, distributed and reviewed by the authors. In this review, three authors were independently involved in the review of research articles and the use of critical assessment criteria. Each reviewer had a different critical assessment; therefore, discussions were held to reach a consensus. The details of the primary research articles reviewed are presented in Table 2. These details include the authors, year of publication, study objectives, study design, sample population, sample size, data collection method, data analysis method, and reliability of the review findings.

Table 1.

Quality Assessment of Included Studies Using the Critical Appraisal Skills Programme Qualitative Research Checklist.

Author (year)	Is there a clear statement of the aims of the research?	Is a qualitative methodology appropriate?	Is the research design appropriate to address the aims of the research?	Is the recruitment strategy appropriate to the aims of the research?	Are the data collected in a way that addressed the research issue?	Is the relationship between researcher and participants adequately considered?	Are ethical issues taken into consideration?	Is the data analysis sufficiently rigorous?	Is there a clear statement of findings?	Is there any research of value?	Score
Abebe et al. (2022)	yes	Yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Ek and Na (2022)	yes	Yes	yes	yes	yes	Unsure	yes	yes	yes	yes	9
Cesar et al. (2013)	yes	Yes	yes	yes	yes	Unsure	yes	yes	yes	yes	9
Ebadi et al. (2018)	yes	Yes	yes	yes	yes	Unsure	yes	yes	yes	yes	9
Eslami et al. (2018)	yes	yes	yes	yes	yes	Unsure	yes	yes	yes	yes	9
Hejazi et al. (2021)	yes	yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Lima et al. (2017)	yes	yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Nkuranyabahizi et al. (2021)	yes	yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Rajkhowa (2019)	yes	yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Salehitali et al., (2018)	yes	yes	yes	yes	yes	yes	yes	yes	yes	yes	10
Surendran et al. (2018a)	yes	yes	yes	yes	yes	Unsure	yes	yes	yes	yes	9

Table 2.

Data Extraction Characteristics of the Included Studies.

Item
Author (year)	Abebe et al. (2022)
Aim	To determine the life experiences of primary family caregivers of patients undergoing dialysis in Southern Ethiopia
Research design	Qualitative phenomenological
Sample	Twelve family caregivers of patients undergoing hemodialysis
Data collection	Interview guides and field notes
Data analysis	Colaizzi's method
Trustworthiness	The questions were made in different sentences and cross-checked the interview data with data from the patient's medical record book
Finding	Biopsychological, socioeconomic and health team–family caregiver relationships. Emotional responses include coping mechanisms, consequences on the family caregivers’ health, fatigue, lifestyle change, social responsibility and social support
Author (year)	Ek and Na (2022)
Aim	To explore the experience of caregivers of patients aged ≥65 years receiving hemodialysis
Research design	Descriptive phenomenological
Sample	Nine family caregivers of patients receiving hemodialysis
Data collection	Semistructured questions
Data analysis	Colaizzi's strategy of descriptive phenomenological data analysis
Trustworthiness	Members’ checking
Finding	Caregivers stated social isolation, little time for self-care and health problems. Factors alleviating caregiver burdens included faith in God, participating in religious practices and negative feelings
Author (year)	Cesar et al. (2013)
Aim	To determine the experiences of family caregivers responsible for the peritoneal dialysis procedure at home
Research design	Qualitative thematic analysis design
Sample	Eight family caregivers of patients who had peritoneal dialysis at home
Data collection	Semistructured interview
Data analysis	Qualitative study
Trustworthiness	Members’ checking
Finding	Three categories emerged, including conditions that impose the responsibility with peritoneal dialysis, the complexity of care and the changes in the routine of family caregivers
Author (year)	Ebadi et al. (2018)
Aim	To obtain an overview of the personal life of family caregivers of patients undergoing hemodialysis
Research design	Graneheim and Lundman's content analysis approach
Sample	Nineteen family caregivers of patients undergoing hemodialysis
Data collection	Individual semistructured interviews
Data analysis	Recorded, typed and imported into the Open Code Software
Trustworthiness	Immersion and triangulation of data sources
Finding	Two categories emerged, including imbalance between caregiving and life and ambiguity in life status
Author (year)	Eslami et al. (2018)
Aim	To explain the perspectives and experiences of the caregivers of patients undergoing hemodialysis in Iran
Research design	Thematic analysis approach
Sample	Twenty-five family caregivers of patients undergoing hemodialysis
Data collection	In-depth and unstructured interviews as well as field observation
Data analysis	Inductive thematic approach
Trustworthiness	Double coding
Finding	The three main themes indicated that caregivers face challenges, including heavy burden of care, tension in care and emotional exhaustion
Author (year)	Hejazi et al. (2021)
Aim	To describe the dimensions of the quality of life of patients undergoing dialysis from the opinions of caregivers’ families
Research design	Inductive content analysis
Sample	Sixteen family caregivers of patients undergoing hemodialysis
Data collection	In-depth semistructured interviews
Data analysis	Elo and Kyngas’ method
Trustworthiness	Members’ checking
Finding	Three main categories were extracted, including mental and psychological, social disruption and physical problems.
Author (year)	Lima et al. (2017)
Aim	To explore the perception of family members in the care of patients undergoing hemodialysis
Research design	Exploratory and descriptive study
Sample	Eight family caregivers of patients undergoing hemodialysis
Data collection	Semistructured interview containing questions about the profile of participants and 14 open-ended questions
Data analysis	Thematic analysis technique
Trustworthiness	Members’ checking
Finding	Three categories emerged that expose caring from the family caregiver's focus, including difficulties experienced by intercurrences and actions taken, degree of knowledge and lack of orientations and adaptations and feelings that emerge from caring
Author (year)	Nkuranyabahizi et al. (2021)
Aim	To obtain an overview of the experience of caring for and supporting the needs of family caregivers of patients with end-stage renal disease in Rwanda
Research design	Qualitative descriptive design
Sample	Twelve family caregivers of patients undergoing hemodialysis
Data collection	Semistructured interview guide
Data analysis	Data coding and themes
Trustworthiness	Members’ checking
Finding	The themes included: “personal issues,” “spiritual issues,” and “sense of satisfaction.” Policy change, shelter and psychological counseling for family caregivers
Author (year)	Rajkhowa (2019)
Aim	To present the experiences and difficulties experienced by family caregivers of patients undergoing dialysis in Ranchi, Jharkhand
Research design	A descriptive–exploratory qualitative design based on a thematic analysis approach
Sample	Twenty-five family caregivers of patients undergoing hemodialysis
Data collection	Semistructured interview
Data analysis	A thematic analysis approach
Trustworthiness	Members’ checking
Finding	Four general themes were identified. The first theme was heavy burden of care, which was recognized as a highly significant problem among the caregivers. The heavy burden was a complicated and multifaceted problem derived from the care experiences
Author (year)	Salehitali et al. (2018)
Aim	To obtain an overview of the experiences of dialysis family member's caregivers about health team service during dialysis
Research design	Content analysis
Sample	Sixteen family caregivers of patients undergoing hemodialysis
Data collection	Semistructured interviews
Data analysis	Content analysis approach
Trustworthiness	Stepwise replication
Finding	Themes identified were “responsive treatment team,” “negative influences of the treatment team,” and “collaborative care,” which were all incorporated into the main theme of “an effective treatment team”
Author (year)	Surendran et al. (2018b)
Aim	To explore the perceived challenges of caregivers of patients with CKD on regular dialysis and identify the suggested solutions for the same case
Research design	Phenomenological qualitative study
Sample	Eighteen family caregivers of patients with CKD
Data collection	The interview guide was prepared by consulting the last author, an expert in qualitative research methods
Data analysis	Manual content analysis
Trustworthiness	Stepwise replication
Finding	Eight broad categories emerged under the theme of perceived challenges of caregivers, including family or day-to-day life, psychological, financial, social, spiritual, physical, treatment-related and travel-related issues and solutions were suggested for them

Note. CKD = chronic kidney disease.

Data Analysis

All research articles were determined from the findings of the review results and subsequently synthesized using the thematic method. Furthermore, the thematic synthesis comprised the following three stages: (a) text coding, (b) descriptive theme development, and (c) analytical theme generation (Thomas & Harden, 2008). One research article was distributed to the first and second authors and then worked separately to emerge analytical themes. This ensured the accuracy of the research. The initial stage began with coding line by line from the text taken from quotations of each article and the initial code as the result of the initial stage. The differences between the results were examined and then categorized into groups on the basis of their similarities. The initial code forms a descriptive theme. The final step was to organize the emerged descriptive themes into appropriate fields. This stage is an analytical one. To derive this analytical theme, discussions between team members were conducted. Themes and subthemes were determined on the basis of the QoL dimensions framework (Martin et al., 2021).

Results

The studies included in this review had objective characteristics, including experience, difficulties, QoL dimension and challenges of family caregivers of patients undergoing dialysis. The sample size was 8–25 family caregivers of patients undergoing dialysis. Data collection was performed using interview guides and field notes, semistructured questions, in-depth and unstructured interviews as well as field observations, in-depth semistructured interviews as well as semistructured interviews with open-ended questions and interview guides. Furthermore, the data analysis used in the studies included Colaizzi's method, Open Code Software, inductive thematic approach, Elo and Kyngas’ method, thematic analysis technique, data and themes coding and content analysis approach.

Four analytical themes can be concluded on the basis of the experience of caring for patients with CKD undergoing dialysis and the QoL perspective of family caregivers. These four analytical themes were (a) physical capacity, (b) social relations, (c) psychological state, and (d) environment. The descriptive and analytical themes are presented in Table 2 and discussed in the following sections.

Physical Capacity

Pain and discomfort, energy and fatigue, daily life activities, sleep and rest, mobility and work capacity are subthemes related to physical capacity. In this review, nine studies identified themes and subthemes of physical capacity.

The activities of taking care of patients with CKD undergoing dialysis can affect the daily activities of family caregivers, including the imbalance between caregiving and life. This is in accordance with the statement of a family caregiver: “Our roles have changed. My mother is a kid at home, and I am somehow a mother, but it was just better in the past … We have got our mom, but we are missing things like how we used to. Somehow, we are in a state of stagnation, neither moving up or down. The time has stopped” (Ebadi et al., 2018). “…with this situation of our mother, many things have changed for us. It is not something simple and easy. There have been several changes in our lives” (Cesar et al., 2013).

Physical problems are physical disturbances experienced by family caregivers because of the care of patients with CKD undergoing dialysis and are general complications, disabilities and functioning organ disturbances. The statement that supports this matter is: “I get so tired of taking care of my brother that I feel like I am ill myself” (Surendran et al., 2018a). “You know worrying is not good, it drains your energy, and always causing a headache, body aches, terrible joints aches with minimal movements and these aches build up so I am always tired and get little sleep” (Ek & Na, 2022). Dialysis, which is experienced by patients with CKD throughout their lives, results in a heavy burden of care perceived by family caregivers. In this review, the family caregiver statement is “… As his illness is chronic, his problems increased everyday and the circumstances become more complicated for us. Every day, he is worse than the day before…” (Eslami et al., 2018). “For instance, previously I was also employed but since I need to take care of my father, I was forced to leave my job…” (Rajkhowa, 2019).

Every individual needs self-care. Family caregivers who take care of patients with CKD undergoing dialysis take a long time to care for and meet the patient's needs, thereby affecting their self-care. It is expressed through the statement: “I feel my mind is occupied and I am exhausted from the responsibility. Many times I forget to take my medicine. I also keep postponing my personal stuff” (Ek & Na, 2022). “I have difficulty managing the time for my needs since I need to accompany patients often” (Salehitali et al., 2018). The difficulties experienced by intercurrences and actions taken are evidenced in the statement “…His problems do not remain fixed and are continuously changing. That way, the works get difficult and it is not possible to pursue them monotonously and routinely…” (Eslami et al., 2018). “My brother, who lives two doors down the street, wants me to move my wife into one of my children's homes … I’ve been doing it for 2 years and there is not much time left for her to live” (Hejazi et al., 2021).

Fatigue is a declining physical condition that can be caused by families taking care of CKD patients undergoing dialysis for a long time. Statements that express such fatigue are: “…When I see him continuously [in] such conditions and think about our life and children, I got much sad and depressed. Chronic disease also makes the caregiver develop chronic fatigue…” (Eslami et al., 2018). “Taking care of my husband keeps me under constant stress because of the endless worrying. You know worrying is not good, it drains your energy, and always causing a headache, body aches, terrible joint aches with minimal movements and these aches build up so I am always tired and get little sleep” (Ek & Na, 2022).

Family caregiver care activities in meeting the needs of dialysis, diet and fluids in patients with CKD can change lifestyle. This is in accordance with the statement: “…His mental problems are different every day; in addition to malnutrition, anemia, infections and repeated hospitalizations all together are troubles that have engaged my mind and body and turned into the most widespread concern of my life…” (Eslami et al., 2018). “… in manual dialysis, we need … at those schedules to be at home. Then of course after he started dialysis, there were no trips to spend a night out” (Cesar et al., 2013). Physical fatigue experienced by family caregivers affects QoL (Akbari et al., 2023). While taking care of patients undergoing dialysis, family caregivers must physically manage and ask for help from other family members.

Social Relations

Personal relationships, relationships with care recipients, social support and being respected by others are subthemes related to social relations. In this review, 10 studies noted themes and subthemes of social relations.

This is supported by the following statements: “My extended family does not come here anymore as they are afraid of the disease and of being asked for financial help” (Surendran et al., 2018b). “Although I feel I am a prisoner at home. I am stuck at home to provide the best care I possibly can. I just want to be able to go out, living my normal social life, work, meet people, and see myself growing…” (Ek & Na, 2022). In this case, collaborative care is needed to treat patients with chronic diseases, including those with CKD undergoing dialysis. The need for collaborative care was expressed in the statement: “I do not want to interfere in their work, but I expect they somehow consider our words” (Salehitali et al., 2018). Another statement is: “We feel much disturbed by the need of traveling every week for dialysis and the long dialysis procedure is seriously troubling my father” (Surendran et al., 2018b).

The activities of taking care of patients with CKD undergoing dialysis can affect family life. This is in accordance with the following statements: “Oh, there are days I think … there are four exchanges per day and we … Look, it's not easy to go out! You have that schedule, you have to get home and undergo dialysis…” (Cesar et al., 2013). “When we go back to our home, I make different home cares; you know he cannot eat all food we eat, when I buy a foodstuff, I select items which are suitable for him. In addition to that, I make hair care, give him a bed bath, make his bed and keep his oral hygiene. Besides, I also comfort him” (Abebe et al., 2022).

Psychological State

Positive and negative feelings, spirituality, religion, belief, values, memory, concentration, and life satisfaction are subthemes related to psychological states. In this review, 11 studies observed themes and subthemes of the psychological state.

Ambiguity in life status including fear, loss of hope, and life satisfaction depending on care is a problem in the care of patients with CKD. This is in accordance with the following statements: “However, we saw that it is ok since this is a treatment, a model of life. It was very hard at first, but then we admitted it, and we do not think that the world is finished anymore” (Ebadi et al., 2018). “First, this is my passionate job. I feel like caring for my relative when I do it, and when he put a smile on his face, cleaned, and when their relatives found him still alive it strengthens me as a caregiver” (Nkuranyabahizi et al., 2021).

Mental problems such as depressive mood, incompatibility and intolerance, mental exhaustion, and deprivation of basic needs also need consideration. This is based on the following statements: “…When I see him continuously [in] such conditions and think about our life and children, I got much sad and depressed. Chronic disease also makes the caregiver develop chronic fatigue…” (Eslami et al., 2018). “It was very difficult to accept. I was almost near to fainting, he is the only brother for me, no other brothers. Previously, I heard about the presence of HD treatment for kidney patients. However, I did not expect it would happen in my family” (Abebe et al., 2022).

Spiritual issues refer to spiritual conflicts that occur within a family caregiver owing to taking care of a family member with a chronic illness. This is in accordance with the following statement: “you work for God, he also works for you. I reassure her and pray for her because we met in prayer” (Nkuranyabahizi et al., 2021). “I can’t believe in God anymore after what has happened to my father, as he was a virtuous and hardworking person with no harmful habits” (Surendran et al., 2018a).

Adaptations and feelings that emerge from caring are the process of adjusting to the process of caring for a family member with a chronic illness. This is expressed in the following statements: “In manual dialysis, we need … at those schedules to be at home. Then of course after he started dialysis, there were no trips to spend a night out” (Cesar et al., 2013). “…We are living a sad life. It is a bad disease and not about to recover. His fistula got infected and his conditions are constantly worsening and life has got hard and breathtaking for us…” (Eslami et al., 2018).

Coping mechanisms are an effort made by family caregivers to deal with the problems experienced in caring for patients with CKD undergoing dialysis. Such sentiments are expressed as follows: “If my mom does not feel okay, I will take my tasks home and do it for another time. I mean, I will let them and I put everything away” (Ebadi et al., 2018). “As a caregiver, dialysis can be hard to cope with, but it's worth it to have my husband more days with us” (Ek & Na, 2022). Coping mechanisms in family caregivers are needed to care for patients with CKD undergoing dialysis. The psychology of family caregivers is affected by the ability to face and solve problems (Ebadi et al., 2021).

Environment

Physical environment, financial resources, home environment, transportation, and health and social care access and quality are subthemes related to the environment. In this review, six studies noted themes and subthemes of the environment.

Health access policy, havens and psychological counseling are facilities needed for family caregivers to support those undergoing dialysis in hospitals. This is based on the following statements: “There is something which make a family caregiver to be weak, we thank the government of Rwanda for bringing Community-Based Health Insurance (CBHI). However, as you see at the beginning of the dialysis session, it mutually helps, but after six weeks it stops” (Nkuranyabahizi et al., 2021). “I wish to have someone to replace me sometimes because it is a very hard work. I am very tired, now you can see that I am drowsing, or if the hospital can arrange us by allowing us to have somewhere to sleep too” (Nkuranyabahizi et al., 2021).

Significant requirements for family caregivers include the degree of knowledge and lack of orientation. New situations and activities to support undergoing dialysis in patients with CKD require new skills and abilities. Family caregivers must learn new things about dialysis, as provided in the following statements “…In terms of nutrition, I don’t know at all what is good and bad for him. I am with him night and day while my affairs are numerous and no one guides me. Physician and nurse also do not tell me as they should do…”(Eslami et al., 2018). “I accompanied my kid to the dialysis unit. His/her fistula did not work well. After 5 years, I realized that this fistula did not work well and I told the nurses and asked them not to inject into it. They did not give the slightest attention to my words. So, they repeated this action so that it has been completely demolished” (Salehitali et al., 2018).

Family caregivers frequently experience financial burdens. Dialysis, which must be performed weekly, requires payment. This is supported by the following statements: “It is only when my patient asks me something and I cannot afford it because I lack money. You know, even people do not come to visit me because is so far away where we come away from here, and money to buy something to end for me is another issue” (Nkuranyabahizi et al., 2021). “He has been ordered to get two HD sessions per week. Imagine how costly it is. We have exploited all options of money for the treatment. We had land which we inherited from our late parents but now we sold it” (Abebe et al., 2022).

Discussion

This study explored the QoL of family caregivers taking care of patients with CKD undergoing dialysis. In this review, the dimensions of QoL include physical capacity, social relations, psychological state and environment (Martin et al., 2021). All of these dimensions have become family caregiver problems when taking care of patients with CKD undergoing dialysis. The daily activities of family caregivers are markedly affected by the activities of caring for patients with CKD.

Physical capacity problems in family caregivers comprise several themes, including the imbalance between caregiving and life, physical problems and functioning organ disturbances, the heavy burden of care, little time for self-care, difficulties experienced by intercurrences and actions taken, fatigue and lifestyle changes. These themes are consistent with the results of previously conducted studies (Abebe et al., 2022; Cesar et al., 2013; Ek & Na, 2014; Eslami et al., 2018; Hejazi et al., 2021; Nkuranyabahizi et al., 2021; Rajkhowa, 2019; Surendran et al., 2018a). The results of these various themes are based on research conducted on family caregivers of patients with stroke, wherein a significant impact on physical capacity was noted owing to the long-term care of these patients (Kusuma et al., 2018). In this review, fatigue was the most influential factor in the problem of physical capacity in family caregivers (Bucki et al., 2016).

Problematic family caregiver’s physical capacity can cause serious problems if left untreated. To provide optimum service to patients and ensure that the health of family caregivers is not disturbed, family caregivers’ physical capacity should receive appropriate intervention. Provision of the right type of food is also a family caregiver problem in caring for patients. Foods with a high dietary acid load can result in a faster decline in kidney function (Rusdi et al., 2023). Patient and family knowledge about diet is a special problem that can affect the QoL (Kurniawati & Asikin, 2018). Good knowledge and attitude of the family are related to the dietary quality of patients with CKD (Hardianti et al., 2013). The most difficult problem experienced by patients is fluid restriction.

The interaction among patients, families and health workers affects adherence to a fluid-restricted diet in patients with CKD undergoing dialysis (Ningsih et al., 2017). Fluid restriction affects the patient's interdialytic weight gain (IDWG). The patient's partner is associated with a stable IDWG (Mundakir et al., 2020). Other comorbidities such as hypertension and diabetes mellitus are factors that contribute to the level of difficulty experienced by family caregivers (Bestari, 2017). Poor lifestyle factors such as obesity and smoking make it difficult for family caregivers to care for patients with CKD (Sinusi & Hargono, 2021). The patient's condition, which hinders the undergoing dialysis process, greatly aggravates the treatment and affects the physical capacity of family caregivers.

Furthermore, social relations problems can occur owing to the care of patients with CKD by family caregivers. In this review, the problems include various themes, including social disruption, collaborative care and family or day-to-day life. Various social relations themes are consistent with those reported in previous studies conducted by Cesar et al. (2013), Ek & Na (2022), Salehitali et al. (2018), Surendran et al. (2018b), and Abebe et al. (2022). The results of the analysis of these themes are consistent with those of a previous study showing that the higher the burden of care, the more problematic are the social relations of family caregivers (Rooij et al., 2020). Caring activities for patients with CKD undergoing dialysis include fulfilling a liquid food diet, undergoing dialysis services weekly and performing patient psychology. These activities can further cause problems for family caregivers, such as reduced time to socialize with other families, friends, and other social environments. Moreover, conflicts among family members are frequent. Communication should be conveyed well with family members to avoid affecting the quality of service to patients with CKD (Dewi et al., 2022).

Long-term caring activities also impact the psychological state of family caregivers. Ambiguity in life status, mental and psychological problems, mental exhaustion, deprivation of basic needs, spiritual issues, adaptations and feelings that emerge from caring, and coping mechanisms are various psychological state themes. The various themes of the psychological state of family caregiver problems are consistent with those of previous studies (Abebe et al., 2022; Cesar et al., 2013; Ebadi et al., 2018; Ek & Na, 2022; Eslami et al., 2018; Nkuranyabahizi et al., 2021; Surendran et al., 2018a). Patients with chronic diseases have serious psychological problems. Therapeutic procedures, care, and medication greatly affect the psychological stability of patients (Northouse et al., 2012). The unstable psychological state of patients with CKD has a reciprocal impact on family caregivers. Patients with CKD who feel depressed make it difficult for family caregivers to provide care (Wulansari & Umbul, 2020). The patients’ deep grief results in the inability to properly follow the dialysis process (Widyawati et al., 2018). Adaptations to CKD development and expectations also influence the psychological status of patients with CKD and their family caregivers.

The environmental situation can also be an obstacle for family caregivers in obtaining access to dialysis for patients with CKD. The environmental theme includes health access policy change, havens and psychological counseling, degree of knowledge and lack of orientation and finances. The environmental situation theme was obtained from the review of previous studies, including Eslami et al. (2018), Salehitali et al. (2018), Abebe et al. (2022), and Nkuranyabahizi et al. (2021). The result of the analysis of this theme indicates that the longer the duration of care, the significantly higher the burden on the family caregiver. Furthermore, the longer the caring, the heavier the financial burden felt by the family caregiver. In addition, inadequate hospital facilities make the burden even heavier (Senmar et al., 2019). The quality of hospital services in providing dialysis affects the satisfaction of patients with CKD and their family caregivers (Hartanti & Antonio, 2022). The dialysis process is greatly influenced by the environmental situation associated with dialysis for patients with CKD. A good environment will make it easier for family caregivers to acquire access to dialysis and reduce their burden.

This review differs from previous research. The results of this review are specific to family caregivers of patients with CKD undergoing dialysis. Themes and subthemes obtained are based on the results of a more detailed review. Measuring the QoL of family caregivers of patients with CKD undergoing dialysis can be performed in various ways, one of which is qualitative methods, which can be used to obtain a more in-depth perspective of family caregivers. The advantage of this method is that the data obtained are more detailed according to the family caregiver's feelings.

Strengths and Limitations

This review thoroughly explains the components of the QoL of family caregivers based on the articles’ quotes. The limitation of this review is that the articles used are based on the last decade.

Implications for Practice

Caring activities for patients with CKD undergoing dialysis have influenced the QoL of all family caregivers. Physical capacity, social relations, psychological state, and environment have been disrupted by these activities. Family caregivers are expected to measure the limits of physical capacity; support and assistance from the social environment including family and friends are highly needed in caring for patients with CKD undergoing dialysis. Coping mechanisms and positive feelings are very necessary when facing difficulties caring for patients undergoing dialysis. Policies that favor the dialysis patient environment including the health system, dialysis payment system and finances are also very significant.

Conclusions

This literature review summarizes the QoL experienced by family caregivers taking care of patients with CKD undergoing dialysis. All dimensions of the QoL have become family caregiver issues. In this review, the analytical themes included physical capacity, social relations, psychological state, and environment. In addition to the patient, the condition of family caregivers should be considered. A good QoL of the family caregivers will improve the balance of life and further increase the ability and quality of care for patients with CKD undergoing dialysis. Furthermore, to ease the burden on family caregivers in caring for patients with CKD undergoing dialysis, there is a need for intervention and implementation of policies at the family, health facility and government levels in supporting dialysis services.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Lailatun Nimah

Nursalam Nursalam

Herdina Mariyanti

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Quality of Life of Family Caregivers of Patients Undergoing Dialysis: A Literature Review

Abstract

Introduction

Objectives

Method

Results

Conclusion

Keywords

Introduction

Method

Design

Review Questions

Eligibility Criteria

Search Strategy

Study Selection Based on the PRISMA Diagram

Data Analysis

Results

Physical Capacity

Social Relations

Psychological State

Environment

Discussion

Strengths and Limitations

Implications for Practice

Conclusions

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iDs

References