Virches A, Claudino MB, Miyazaki MC, Miyazaki ET, Silva RF, Silva RC, Farias HB, Domingos NA, Santos Jr R, Fucuta PS. Burden, stress and depression in caregivers of cirrhosis patients before and after liver transplantation. World J Transplant 2025; 15(2): 102003 [DOI: 10.5500/wjt.v15.i2.102003]
Corresponding Author of This Article
Maria C Miyazaki, PhD, Department of Psychology, School of Medicine of São José do Rio Preto (FAMERP/Faculdade de Medicina de São José do Rio Preto), 5416 Avenida Brigadeiro Faria Lima, São José do Rio Preto 15090-000, São Paulo, Brazil. cmiyazaki@famerp.br
Research Domain of This Article
Psychology
Article-Type of This Article
Observational Study
Open-Access Policy of This Article
This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Adriano Virches, Mariana B Claudino, Maria C Miyazaki, Eliane T Miyazaki, Neide A Domingos, Randolfo Santos Jr, Department of Psychology, School of Medicine of São José do Rio Preto (FAMERP/Faculdade de Medicina de São José do Rio Preto), São José do Rio Preto 15090-000, São Paulo, Brazil
Renato F Silva, Department of Surgery and Study Group of Liver Tumors - GETF and Liver and Small Intestine Transplantation Unit, School of Medicine of São José do Rio Preto and Base Hospital, São José do Rio Preto 15090-000, São Paulo, Brazil
Rita C Silva, Department of Gastroenterology and Liver and Small Intestine Transplantation Unit, School of Medicine of São José do Rio Preto and Base Hospital, São José do Rio Preto 15090-000, São Paulo, Brazil
Heitor B Farias, Stricto Sensu Graduate Program in Psychology, Pontifical Catholic University of Minas Gerais, Belo Horizonte 32604-115, Minas Gerais, Brazil
Patricia S Fucuta, Stricto Sensu Graduate Program in Psychology and Health, School of Medicine of São José do Rio Preto, São José do Rio Preto 15090-000, São Paulo, Brazil
Patricia S Fucuta, Department of Medicine, Faceres Medical School, São José do Rio Preto 15090-305, São Paulo, Brazil
Author contributions: Virches A, Miyazaki MC, and Fucuta PS designed the study; Virches A, Miyazaki MC, and Farias HB wrote the paper; Virches A, Claudino MB, Miyazaki ET, Domingos NA, Silva RF, and Silva RC conducted the study; Farias HB and Fucuta PS conducted the statistical analysis; Santos Jr R and Fucuta PS supervised the study; and all authors thoroughly reviewed and endorsed the final manuscript.
Supported by The Coordination for the Improvement of Higher Education Personnel Brazil, No. 88882.46424/2019-01; and The Brazilian National Council for Scientific and Technological Development, No. 314381/2021-0.
Institutional review board statement: This study was reviewed and approved by the Ethics Committee of the FAMERP School of Medicine Institutional Review Board, approval No. 3.259.369.
Informed consent statement: All participants received detailed clarifications about the study and ethical aspects, provided written informed consent before inclusion in this study and received a copy of the free and informed consent form.
Conflict-of-interest statement: All the authors report no relevant conflicts of interest for this article.
Data sharing statement: Statistical code, and dataset available from the corresponding author at cmiyazaki@famerp.br. Participants gave informed consent for data sharing.
STROBE statement: The authors have read the STROBE Statement-checklist of items, and the manuscript was prepared and revised according to the STROBE Statement-checklist of items.
Open-Access: This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: https://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Maria C Miyazaki, PhD, Department of Psychology, School of Medicine of São José do Rio Preto (FAMERP/Faculdade de Medicina de São José do Rio Preto), 5416 Avenida Brigadeiro Faria Lima, São José do Rio Preto 15090-000, São Paulo, Brazil. cmiyazaki@famerp.br
Received: October 5, 2024 Revised: November 14, 2024 Accepted: December 2, 2024 Published online: June 18, 2025 Processing time: 139 Days and 4.7 Hours
Abstract
BACKGROUND
Family caregivers of cirrhosis patients (CPs) often experience burden, stress, and depression. Investigating whether these conditions improve following the patient undergoing liver transplantation (LT) is crucial, as it would elucidate the comprehensive benefits of the procedure and demonstrate the positive impacts not only on the patients but also on their caregivers and society.
AIM
To compare the levels of burden, stress and depression among family caregivers of cirrhotic and liver transplant patients.
METHODS
This cross-sectional observational study evaluated caregivers of CPs and LT recipients at a quaternary Brazilian hospital. Instruments included identification cards, interview scripts, the caregiver burden scale Inventory, Lipp’s Stress Symptom Inventory, and the Beck Depression Inventory-Second Edition. Psychometric analyses involved confirmatory factor analysis and calculation of McDonald’s omega and composite reliability. Factor scores were compared with the Mann-Whitney U test, with effect size as the rank-biserial correlation coefficient (r). Statistical analysis was performed with R software (P < 0.05).
RESULTS
Seventy-seven CP caregivers and 65 LT recipient caregivers were included. Most were female (CP: 85.7% vs LT: 84.6%) and the patients’ spouses (76.6% vs 63.1%). The median age and caregiving duration were 55.4 (23.3-76.3) vs 54.6 (25.7-82.1) and 3.9 (1-20) vs 8 (1.5-24) years, respectively (P = 0.001). LT caregivers were less likely to be at risk of overload (21.5% vs 49.4%), to be under stress (33.8% vs 36.4%) and to show symptoms of depression (15.4% vs 35.1%). Compared with LT caregivers, CP caregivers had greater median factor scores for burden (general tension, P = 0.012; isolation, P = 0.014; disappointment, P = 0.004), depression (P = 0.008), and stress (P = 0.047), with small to moderate effect sizes. The disappointment (r = 0.240) and depression (r = 0.225) dimensions had the largest effect sizes.
CONCLUSION
Family caregivers of LT recipients are less likely to exhibit symptoms of burden, stress, and depression, suggesting that the benefits of LT extend to the patients’ family members.
Core Tip: Family caregivers of patients with chronic illnesses face increased risks of burden and mental health disorders. Liver transplantation is a therapeutic approach whose benefits extend to family members. When comparing the mental health of caregivers of cirrhotic patients and caregivers of liver transplant recipients, the latter group showed lower levels of burden, stress, and depression, suggesting that the benefits of this procedure extend beyond the patients to their families, and consequently, to society. However, elevated levels of these conditions in both groups underscore the importance of addressing the mental health needs of family caregivers.
Citation: Virches A, Claudino MB, Miyazaki MC, Miyazaki ET, Silva RF, Silva RC, Farias HB, Domingos NA, Santos Jr R, Fucuta PS. Burden, stress and depression in caregivers of cirrhosis patients before and after liver transplantation. World J Transplant 2025; 15(2): 102003
Cirrhosis is a diffuse alteration of the liver in which the healthy liver parenchyma is replaced by fibrous tissue and regenerative nodules, potentially resulting in portal hypertension and liver failure[1,2]. In the asymptomatic phase, also called compensated cirrhosis, the patient is unable to perceive any clinical manifestations. In the symptomatic phase, also known as decompensated cirrhosis, the patient may present with systemic complications, resulting in hospitalization, reduced quality of life and high mortality[2]. Therapy consists of treating the symptoms and comorbidities and preventing decompensations and complications[2]. However, in some patients, the disease will progress to the need for liver transplantation (LT), the only effective treatment for reversing end-stage disease[3]. Given the complexity of treatment and LT, patients face a series of objective and subjective losses that require adaptation at each stage of the disease, as well as the participation of a family caregiver[4]. Generally, the family caregiver does not take on this task by choice: They are chosen because they are the only person available at the time, and there is no possibility of analyzing their personal, emotional, physical and technical characteristics for care[5,6]. Not having a choice to become a caregiver has been associated with higher levels of stress and greater negative impact on caregiver’s health[6]. The tasks performed by family caregivers of patients with chronic diseases are complex and increase the risk of physical and mental illness due to prolonged stress[7]. When the quantity or quality of the patient’s needs exceeds the caregiver’s ability to perform, owing to either a lack of technical knowledge or time or pressure by the responsibility of caring, the caregiver is likely to suffer from overload[8,9].
Although the cirrhosis is resolved after LT, the patient still has social, physical and psychological needs that must be met[10]. Although LT has been shown to improve quality of life[11,12] and contribute to the recovery of work capacity and psychosocial reintegration, there are still some limitations[13,14]. Nevertheless, it is expected that the stressors involved in the care process will decrease and that family members will gradually return to their daily and self-care routines. Brazil has become internationally renowned in the field of LT[15]. However, few national studies have evaluated the impact of LT on the mental health of family caregivers; addressing this gap can reveal the impact of LT not only on patients’ lives but also, more importantly, on the lives of family caregivers. Thus, this study aims to evaluate the levels of burden, stress and depression in family caregivers of cirrhosis patients (CPs) and LT recipients.
MATERIALS AND METHODS
Study population and data collection
This is a cross-sectional, single-center, analytical observational study conducted at the Department of Gastrohepatology [Gastro-Hepatology Service (SGH)] and the LT Unit (UTF) of a quaternary hospital in the interior of the state of São Paulo, Brazil. Family caregivers of CPs and of LT recipients were recruited. Patient inclusion criteria included age ≥ 18 years and at least 12 months of treatment for cirrhosis or LT; family member inclusion criteria included age ≥ 18 years and at least 12 months of service as the main caregiver of the patient for 12 months. Family caregivers were excluded if their patients were candidates for retransplantation, underwent double transplantation (liver-kidney) or had fulminant hepatitis. From April 2019 to March 2020, patients who were primarily awaiting outpatient medical care or were hospitalized on days when the researchers were available for data collection were selected and consecutively included in the study. The inclusion and exclusion criteria were verified in their medical records. Patients who met the inclusion criteria were personally approached by the researchers, who verified the presence of family caregivers and applied their inclusion and exclusion criteria. Both patients and caregivers were selected through convenience sampling (caregivers were also consecutively included in the study).
After being invited to participate in the study, family caregivers who agreed to participate received detailed explanations about the study and its ethical aspects and signed an informed consent form. The researchers administered questionnaires individually, in a private room and without the presence of the patient to provide a private and safe environment where caregivers could express themselves freely. The researchers also emphasized that the aim of the study was to exclusively investigate caregivers’ burden, stress and symptoms of depression. That all responses would be treated with strict confidentiality and that there would be no judgment of their answers. This assurance of confidentiality was established to minimize response bias and to encourage caregivers to share their experiences honestly and openly. The questionnaires were answered by the family caregivers only once. No interventions were implemented as part of this study, and participation was strictly observational. The study was approved by the Ethics Committee of the FAMERP School of Medicine Institutional Review Board, approval No. 3.259.369 and the determinations of Resolution No. 466/2012 of the Brazilian National Health Council were followed.
Questionnaires
The instruments used for data collection were as follows: (1) Patient identification forms, for collecting sociodemographic and clinical data of the patients[16]); (2) Interview Guide for Informal Caregivers of Patients with Chronic Liver Disease, for collecting sociodemographic data from and characterizing the sample of family caregivers (adapted from Miyazaki et al[17]); (3) Caregiver burden scale (CBS) - Brazilian version, a somatic inventory composed of 22 items (each of which is scored from 1 point to 4 points) used to investigate the burden experienced by informal caregivers through five subscales: General tension, isolation, disappointment, emotional involvement and environment. The results are interpreted according to the total score: A score > 36 indicates a risk of overload, and a score close to 24 indicates the need to seek some type of help. The individual score of each subscale is obtained by calculating the arithmetic mean of the scores of the subscale items; a higher score indicates that the caregiver feels a greater impact of burden[18]; (4) Lipp’s Stress Symptoms Inventory (LSSI) for adults, for assessing the level of stress in an individual by identifying the physical or psychological symptoms presented in each of the following phases of stress: Alert, resistance, near exhaustion and exhaustion. The inventory allows verification of whether the subject has stress, which stage of stress he or she is in, and the predominance of physical or psychological symptoms in the patient[19]; (5) Beck Depression Inventory-Second Edition (BDI-II) - Brazilian version, for measuring the presence and intensity of symptoms of depression. It consists of 21 items and is scored on a Likert scale (0 point to 3 points). The classification identifies four levels of intensity: Minimal (0-13 points), mild (14-19 points), moderate (20-28 points) and severe (29-63 points)[20].
Statistical analysis
Exploratory data analysis was performed, including calculation of the means, standard deviations, medians and variations for continuous variables and the absolute and relative frequencies for categorical variables. The behavior of the numerical variables was analyzed via descriptive statistics, histograms, boxplots and the Kolmogorov-Smirnov test. Confirmatory factor analyses were conducted for the structural models of the instruments, considering the ordinal nature of the scale scores. Tetrachoric and polychoric correlation matrices were used, and the weighted least squares mean and variance-adjusted estimation method was used[21]. Model fit was assessed with the root mean square error of approximation (RMSEA), comparative fit index (CFI) and Tucker-Lewis index (TLI). According to recommendations from the literature[22-25], models with RMSEA values lower than 0.08 [confidence interval (CI) not exceeding 0.10] and CFI and TLI values greater than or equal to 0.90 were considered acceptable. The reliability of the latent variables was assessed with McDonald’s omega [coefficient (ω)] and composite reliability (CR), in which values equal to or greater than 0.60 were considered acceptable. To compare numerical variables between independent groups, the Mann-Whitney U test was used, and the effect size was calculated as the rank-biserial correlation coefficient (r). Nominal categorical variables were compared with Pearson’s χ2 test or Fisher’s exact test, as appropriate. All statistical analyses were performed with IBM SPSS Statistics software, version 24 (IBM Corporation, Armonk, NY, United Sates) and R version 4.4.1[26]. All tests were considered two-tailed, and the level of statistical significance (α) was set to 0.05.
RESULTS
During the study period, a total of 435 patients were evaluated. Following application of the inclusion and exclusion criteria, 232 were excluded (99 CPs and 112 LT recipients without caregivers; 20 dual LT recipients; and 1 with fulminant hepatitis). Subsequently, 203 family caregivers were approached by the researchers, and 61 were excluded (4 and 11 family caregivers of CPs and LT recipients, respectively, had cared for their family members for less than 12 months; 29 were not the main family caregivers of LT recipients; 13 refused to participate; and 4 did not complete the questionnaires). A total of 142 family caregivers participated in the study: (1) 77 (100%) cared for CPs, 66 (85.7%) in outpatient consultations (40/66 in the UTF; 26/66 in the SGH) and 11 (14.3%) admitted patients (9/11 in the UTF; 2/11 in the SGH); and (2) 65 (100%) cared for LT recipients 63 (96.9%) in outpatient consultations and 2 (3.1%) admitted to the UTF.
Sociodemographic characteristics of family caregivers and patients
Most family caregivers were women (121/142; 85.2%), and the patients were predominantly men (108/142; 76.1%). The relationship of the family caregivers to their charges (CP and LT recipients) were as follows: (1) Spouses: 76.6% (59/77) and 63.1% (41/65); (2) Offspring: 11.7% (9/77) and 16.9% (11/65); (3) Parents: 2.6% (2/77) and 7.7% (5/65); (4) Siblings: 6.5% (5/77) and 1.5% (1/65); and (5) Others: 2.6% (2/77) and 10.8% (7/65). Among the patients, 84.4% (65/77) and 66.2% (43/65) were married, and 76.6% (59/77) and 75.4% (49/65) had children of 18 years of age or older. Almost all the family caregivers, 97.4% (75/77) and 98.5% (64/65), did not receive any type of financial assistance to care for the patient. Only 13% (10/77) and 24.6% (16/65) of family caregivers lived in the same city where their respective patients underwent health care; 85.7% (66/77) and 84.6% (55/65) resided in the same federation unit. The other sociodemographic and socioeconomic data of the family caregivers and patients and the results of a comparative analysis between the groups are presented in Table 1.
Table 1 Comparative analysis of the sociodemographic characteristics of the family caregivers and patients included in the study, n (%).
The median durations of treatment for the CPs and LT recipients were 4 (1-23) years and 8.6 (1.9-23.6) years, respectively. An alcoholic etiology was recorded for slightly more than half of all patients, and some patients had more than one associated etiology. Among the LT recipients, 3.1% (2/65) had undergone retransplantation. The main decompensations reported by the CPs were esophageal varices 59.7% (46/77); encephalopathy 51.9% (40/77); and ascites 48.1% (37/77). The main complications reported by the LT recipients were viral recurrence 18.5% (12/65) and hernia and biliary complications 16.9% (11/65). Other clinical information is presented in Table 2.
Table 2 Clinical characteristics of the patients, n (%).
Characteristics
CP (n = 77)
LT (n = 65)
Etiology of cirrhosis
Alcoholic
42 (54.5)
33 (50.8)
Nonalcoholic fatty liver disease
23 (29.9)
10 (15.4)
Hepatitis C virus
13 (16.9)
21 (32.3)
Hepatocellular carcinoma
12 (15.6)
16 (24.6)
Other
15 (19.5)
26 (40)
Model for end-stage liver disease score
6 to 10
17 (22.1)
NA
11 to 14
27 (35.1)
NA
15 to 20
18 (23.4)
NA
≥ 21
3 (3.9)
NA
Not available
12 (15.6)
NA
Child-turcotte-Pugh classification
A
27 (35.1)
NA
B
32 (41.6)
NA
C
6 (7.8)
NA
Not available
12 (15.6)
NA
Decompensations/complications
0
7 (9.1)
27 (41.5)
1 to 2
35 (45.5)
32 (49.2)
≥ 3
35 (45.5)
6 (9.2)
Number of hospitalizations
0
19 (24.7)
21 (32.3)
1
14 (18.2)
16 (24.6)
2 to 4
27 (35.1)
16 (24.6)
≥ 5
17 (22.1)
12 (18.5)
Emotional aspects of family caregivers
Of the CP caregivers, 44.2% (34/77) reported that people generally reacted negatively to the patient’s illness, while 73.8% (48/65) of the caregivers of LT recipients considered that others’ reactions were normal or positive when they learned about the disease and the LT status of the patient. Among the relatives of CPs and LT recipients, 40.3% (31/77) and 40% (26/65), respectively, did not have any other person to help care for the patient, while 70.1% (54/77) and 92.3% (60/65) felt fully prepared and informed to care for the patient. A total of 71.4% (55/77) and 67.7% (44/65), respectively, reported that the relationship with the patient was the same as that before the diagnosis, whereas 10/77 and 9/65 considered the relationship to have improved, and 8/77 and 10/65 considered it to have worsened. The presence of negative emotional aspects instigated by the patient and by the task of caring were lower among family caregivers of LT recipients (Table 3).
Table 3 Comparative analysis of the perception of care by family caregivers, n (%).
Burden, stress and depression in family caregivers - descriptive analysis
Table 4 shows the results of the descriptive analysis of burden, stress and symptoms of depression among family caregivers. The proportion of caregivers with burden, stress and depression was greater among those who cared for CPs. Among caregivers with stress, most were in the resistance phase in both groups, but a considerable proportion of caregivers in the near-exhaustion and exhaustion phases was identified among CP caregivers. In addition to the results shown in Table 4, among family members who cared for CPs and LT recipients with a liver disease etiology of alcohol, 50% (21/42) and 30.3% (10/33), respectively, were at risk of overload, 38.1% (16/42) and 36.4% (12/33) had stress, and 21.4% (9/42) and 9.1% (3/33) had indications of moderate and severe depression.
Table 4 Descriptive analysis of burden, stress and depression in family caregivers, n (%).
Characteristics
CP (n = 77)
LT (n = 65)
Overload
No overload
4 (5.2)
11 (16.9)
Need to seek help
35 (45.5)
40 (61.5)
Risk of overload
38 (49.4)
14 (21.5)
Stress
Yes
28 (36.4)
22 (33.8)
No
49 (63.6)
43 (66.2)
Stress phase
Alert
1 (3.6)
0 (0.0)
Resistance
20 (71.4)
20 (90.9)
Near-exhaustion
5 (17.9)
2 (9.1)
Exhaustion
2 (7.1)
0 (0.0)
Symptoms of stress
Physical
8 (28.6)
6 (27.3)
Psychological
17 (60.7)
15 (68.2)
Physical and psychological
3 (10.7)
1 (4.5)
Symptoms of depression
Minimum
50 (64.9)
55 (84.6)
Light
11 (14.3)
6 (9.2)
Moderate
9 (11.7)
1 (1.5)
Severe
7 (9.1)
3 (4.6)
Burden, stress and depression in family caregivers: Validation of scales in the sample and comparative analysis of factor scores between groups of caregivers
The CBS was originally conceived as a structure of five associated factors[27]. The model showed excellent fit to the data [χ2 (199) = 170.417; CFI = 1.000; TLI = 1.003; RMSEA = 0.000 (0.000-0.011)], meeting the criteria established for the fit indices (CFI and TLI ≥ 0.90; RMSEA ≤ 0.08). These results support the validity of the tested model, indicating that the CBS five-factor model was not refuted. Apart from the environmental factor (ω = 0.410; CR = 0.403), all factors showed adequate reliability: General tension (ω = 0.918; CR = 0.856), insulation (ω = 0.827; CR = 0.738), disappointment (ω = 0.827; CR = 0.716), and emotional involvement (ω = 0.830; CR = 0.722). As the environmental factor did not demonstrate satisfactory reliability, we chose to exclude it from subsequent analyses. Both the LSSI and the BDI-II are unidimensional scales. Both models demonstrated adequate validity results: LSSI [χ2 (1274) = 1508.902; CFI = 0.991; TLI = 0.991; RMSEA = 0.036 (0.028-0.0430)] and BDI-II [χ2 (189) = 189.692; CFI = 1.000; TLI = 1.000; RMSEA = 0.005 (0.000-0.037)]. The reliability estimates were high for stress (ω = 1.050; CR = 0.949) and depression (ω = 0.970; CR = 0.918). We observed that the value of McDonald’s omega for stress exceeded 1, which is uncommon and may indicate estimation problems.
We consider this overestimation to be a result of the sample size and the high number of items (53) in the instrument. Recent studies on the LSSI have demonstrated an adequate factorial structure[28]; therefore, we chose not to perform additional analyses with restrictions on the model to correct for possible estimation errors. However, we interpreted the results with caution. The factor loadings of the one-dimensional model had a mean of 0.71, with a standard deviation of 0.16 (minimum: 0.28; maximum: 0.97), and the average variance extracted was 0.53, indicating adequate convergence. We calculated the factor scores for the three factorial structures with the empirical Bayes modal method, applying appropriate transformation methods when necessary, via the lavaan package version 0.6-18[29]. We compared the factor scores of the models between caregivers of CP (n = 77) and LT recipients (n = 65). The caregivers of CPs had significantly higher median scores in the dimensions general tension [P = 0.012; rank-biserial r = 0.211 (95%CI: 0.05-0.37)], isolation [P = 0.014; rank-biserial r = 0.207 (95%CI: 0.04-0.35)], disappointment [P = 0.004; rank-biserial r = 0.240 (95%CI: 0.09-0.38)], depression [P = 0.008; rank-biserial r = 0.225 (95%CI: 0.06-0.39)] and stress [P = 0.047; rank-biserial r = 0.167 (95%CI: 0.02-0.32)] than did the caregivers of LT recipients (Table 5). These effect sizes suggest a small to moderate magnitude to the observed differences. We found no statistically significant difference in the emotional involvement dimension of the CBS (P = 0.068).
Table 5 Comparative analysis of the factor scores of the models by dimension.
According to the results of this study, compared with caregivers of LT recipients, caregivers of CPs had significantly higher median factor scores in the following dimensions: Of general tension, isolation, disappointment, depression and stress. The values of the rank-biserial r for these dimensions ranged from 0.167 to 0.240, indicating small to moderate effect sizes according to Cohen’s criteria[30]. Specifically, the disappointment (r = 0.240) and depression (r = 0.225) dimensions had the largest effect sizes, suggesting that caregivers of patients awaiting LT experience higher levels of discontent and depressive symptoms. In fact, among chronic diseases, cirrhosis imposes the greatest burden on patients, caregivers and society[31]. Other studies have also identified the presence of burden and depression among caregivers of patients with CP and other chronic diseases[32-35]. The absence of a statistically significant difference in the emotional involvement dimension indicates that both groups demonstrate similar levels of affective involvement, possibly reflecting adaptive mechanisms or equivalent social support. Although the effect sizes were modest, they demonstrate the presence of a significant psychological impact on caregivers of CPs. These findings are in agreement with those of studies suggesting an increase in psychological stress in caregivers of patients on the waiting list for LT[17]. The pre-transplantation period is often characterized by uncertainty and deterioration in patient quality of life[36], which can exacerbate feelings of tension, isolation and depression. Therefore, multidisciplinary teams should include psychosocial interventions for this group, aiming to reduce psychological distress and improve general well-being while the patient waits for the procedure.
In this context, our service provides support through a “waiting room” for both cirrhotic and liver transplant patients, staffed by multidisciplinary professionals who offer guidance and address caregivers’ questions. This routine service, available to all patients, ensures that caregivers are well-informed about the disease and adequately prepared to care for the patient. The findings of the present study suggest that for the patient, stressors tend to decrease as the LT fulfills its role of improving the patient’s global functioning and autonomy. The presence of negative emotional aspects related to the patient and the task of caring were also lower in the family caregivers of LT recipients despite their greater median time of care than that of CP caregivers. LT recipient caregivers showed less irritability with the presence of the patient, less negative interference from the patient in the familial relationship, less sense of loss of privacy, less feeling of inability to continue caring and less desire to delegate care to someone else, possibly because they are experiencing the benefits of the LT in the patient’s life. For the same reason, fewer caregivers felt that they were under high levels of pressure. The low proportion of LT recipients who reported missing work or unemployment is encouraging, given the difficulties encountered in returning to work for such individuals. Other studies have indicated improved employability after LT, with good rates of return to work for those who were employed before surgery[37-39]. These data also corroborate the importance of this form of treatment in social terms, as it has been associated with a reduction in the costs of lost productivity, socially rehabilitating these individuals and making them again fit for work.
Approximately half of the LT recipients experienced no postoperative complications, and the remainder experienced only one or two complications. These findings may contribute to the satisfactory return of quality of life, which may, in the long run, equal or even exceed the quality of life of the general population[40]. Despite the lower percentages of LT recipient caregivers at risk of overload and with symptoms of depression, burden and stress symptoms were still present. This finding shows that, even after LT has been completed, the caregivers continue to face challenges[41]; indeed, stress and depression remain a frequent problem for family caregivers of patients with chronic diseases[42,43]. Most caregivers experiencing stress were in the resistance phase, with a predominance of psychological symptoms, similar to the results reported in other studies that used the LSSI to assess the presence of stress in caregivers[44,45].
Previous studies have also identified stressors associated with increased burden and losses for family caregivers[46]. These include a spousal relationship, an alcoholic etiology[32], decompensations and complications such as encephalopathy[47,48], and financial concerns[49]. In this study, most caregivers were women and spouses to the patients, most patients were male[50,51], and the most common etiology was alcohol abuse[32]. Among the patients with an alcoholic etiology, half of the caregivers of CPs were at risk of overload, and half of the caregivers of LT recipients needed to seek some type of help. Family members of CPs whose etiology was alcohol abuse may experience a greater burden due to their previous experience with the patient, suffering psychological, financial and even physical damage caused by the patient’s alcohol consumption[31]. Encephalopathy, present in approximately half of the CPs, had previously been identified as a predictor of overload[52,53].
More than half of the caregivers were younger than 60 years of age, approximately half were employed[54], and almost all of them did not receive financial assistance for providing care. The combination of unpaid care and paid employment is a common reality for many family caregivers worldwide, resulting in an overload of tasks that predominantly affects women. In addition, unpaid care is associated with worse mental health conditions in women than in men[55]. Although there has been a gradual increase in the proportion of men assuming the role of caregiver[56], the belief that this role is a responsibility of women still persists[57]. It is important to note that, in Brazil, candidates for transplants through the Unified Health System have a series of rights that ensure free treatment, with the aim of preparing them for transplantation in better conditions[58]. After being included on the waiting list, these patients receive regular monitoring that includes consultations and follow-up by multidisciplinary teams, exams and essential health guidance. In addition, Unified Health System offers the Treatment Away from Home program, which provides access to specialized medium and high complexity treatments outside the patient’s city of residence[59]. This program offers financial support for transport costs and, in some situations, accommodation and meals for the patient and a companion, ensuring that people from areas with limited medical infrastructure are able to receive adequate care in other regions. This aid can be understood as social support by patients and caregivers, since it reduces the financial burden associated with the disease and its treatment.
One of the limitations of this study is its cross-sectional design, which prevents the determination of causality. In addition, the instruments used did not allow us to determine the exact cause of the symptoms evaluated. The preexistence of mental disorders or comorbidities among caregivers was also not evaluated. Future studies should employ a longitudinal design with patients waiting for LT and middle- and long-term reassessment after the procedure to investigate the benefits to the caregiver’s quality of life, as suggested by Young et al[60]. Such longitudinal studies may reveal the potential benefits of LT in the long term. In addition, owing to the small sample size, it was not possible to assess the invariance of the scales between the LT and CP groups, which limits the interpretation of the comparisons between these subpopulations. The absence of invariance tests limits the confidence in the conclusions about the differences between groups, since we cannot guarantee that the instruments measure the same constructs in an equivalent manner in all subgroups. Future studies with larger samples should include invariance analyses to ensure that the scales function equivalently between the groups, allowing robust comparisons and ensuring the validity of the conclusions[61,62].
CONCLUSION
The present study revealed that a significant proportion of caregivers, both of CPs and of LT recipients, experienced burden, stress and symptoms of depression. However, the corresponding indices were significantly lower among caregivers of LT recipients, indicating the extended benefit of this procedure for patients’ family members and, consequently, for society. Our results should be seen as initial evidence, given the exploratory nature of the cross-sectional study in causality analyses.
ACKNOWLEDGEMENTS
The authors would like to thank all the family caregivers of the CPs and liver transplant recipients who participated in the study.
Footnotes
Provenance and peer review: Invited article; Externally peer reviewed.
Peer-review model: Single blind
Corresponding Author’s Membership in Professional Societies: Sociedade Brasileira de Psicologia; Federação Brasileira de Terapias Cognitivas.
Specialty type: Transplantation
Country of origin: Brazil
Peer-review report’s classification
Scientific Quality: Grade C
Novelty: Grade B
Creativity or Innovation: Grade B
Scientific Significance: Grade C
P-Reviewer: Wang B S-Editor: Bai Y L-Editor: A P-Editor: Zhang YL
Valente Filho R, Lyra AC.
Abordagem do paciente cirrótico na sala de emergência. In: Bittencourt PL, Zollinger CC, Lopes EPA, editors. 2nd ed. Manual de cuidados intensivos em hepatologia. Barueri: Manole, 2017: 8-14.
[PubMed] [DOI][Cited in This Article: ]
Shin JY, Pohlig R, Habermann B. Impacts of Perceived Choice on Physical Strain, Emotional Stress and Health among Caregivers.West J Nurs Res. 2023;45:826-832.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Siriwardana R, Gunetilleke B, Jayatunge S, Weerasooriya A, Niriella M, Dassanayake A, Ranaweera S, Tillakaratne S. The long-term quality of life following liver transplantation in a developing country with a free health care system.Ceylon Med J. 2022;67:89-93.
[PubMed] [DOI][Cited in This Article: ][Cited by in RCA: 1][Reference Citation Analysis (0)]
Associação Brasileira de Transplante de Órgãos.
Registro Brasileiro de Transplantes. [cited 5 October 2024]. Available from: https://site.abto.org.br/conteudo/rbt/.
[PubMed] [DOI][Cited in This Article: ]
Virches A.
Sobrecarga, estresse e depressão em cuidadores informais de pacientes com cirrose hepática: pré e pós-transplante de fígado. [cited 5 October 2024]. Available from: http://bdtd.famerp.br/handle/tede/731.
[PubMed] [DOI][Cited in This Article: ]
Miyazaki ET, Dos Santos R Jr, Miyazaki MC, Domingos NM, Felicio HC, Rocha MF, Arroyo PC Jr, Duca WJ, Silva RF, Silva RC. Patients on the waiting list for liver transplantation: caregiver burden and stress.Liver Transpl. 2010;16:1164-1168.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 63][Cited by in RCA: 67][Article Influence: 4.5][Reference Citation Analysis (0)]
Medeiros MMC, Ferraz MB, Quaresma MR, Menezes AP. Adaptation and validation of the caregiver burden scale to Brazilian cultural milieu.Rev Bras Reumatol. 1998;38:193-199.
[PubMed] [DOI][Cited in This Article: ]
R Foundation.
The R Project for Statistical Computing. [cited 19 September 2024]. Available from: https://www.R-project.org/.
[PubMed] [DOI][Cited in This Article: ]
Cohen J.
Statistical Power Analysis for the Behavioral Sciences. 2nd ed. New York: Lawrence Erlbaum Associates, 1988.
[PubMed] [DOI][Cited in This Article: ]
Hareendran A, Devadas K, Sreesh S, Tom Oommen T, Varghese J, Lubina S, Nahaz N, Krishna A, Mullali Mohamed Kunhi N. Quality of life, caregiver burden and mental health disorders in primary caregivers of patients with Cirrhosis.Liver Int. 2020;40:2939-2949.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 7][Cited by in RCA: 14][Article Influence: 2.8][Reference Citation Analysis (0)]
Gençler A, Kılıçaslan F. Assessment of Caregiver Burden, Depression and Quality of Life Levels Among Mothers of Children with Chronic Kidney Disease.Psychiatry. 2024;87:227-240.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Nagel M, Labenz C, Wörns MA, Marquardt JU, Galle PR, Schattenberg JM, Nguyen-Tat M. Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives.Health Qual Life Outcomes. 2020;18:10.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 4][Cited by in RCA: 4][Article Influence: 0.8][Reference Citation Analysis (0)]
Vieux L, Simcox AA, Mediouni Z, Wild P, Koller M; Swiss Transplant Cohort Study, Studer RK, Danuser B. Predictors of Return to Work 12 Months After Solid Organ Transplantation: Results from the Swiss Transplant Cohort Study.J Occup Rehabil. 2019;29:462-471.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 13][Cited by in RCA: 10][Article Influence: 1.7][Reference Citation Analysis (0)]
Kantanis A, Pelantaki M, Fountaki ML, Konstantopoulos V, Paraskevas T, Stavropoulou E, Tsiamaki E, Trimmis N, Plotas P. Stress and Quality of Life in Caregivers of Patients with Multiple Sclerosis.Medicina (Kaunas). 2024;60:1033.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Gumikiriza-Onoria JL, Nakigudde J, Mayega RW, Giordani B, Sajatovic M, Mukasa MK, Buwembo D, Lwere K, Nakasujja N. Psychological distress among family caregivers of persons with Alzheimer's disease and related dementias in Uganda.BMC Geriatr. 2024;24:602.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Kist Bakof K, Morais Machado L, Rocha Iensen G, Iwersen Faria S, Silva Rodrigues I, Passaglia Schuch A, Jacques Schuch N, Boeck CR. Stress and its contribution to the development of depression symptoms are reduced in caregivers of elderly with higher educational level.Stress. 2021;24:676-685.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 1][Cited by in RCA: 1][Article Influence: 0.3][Reference Citation Analysis (0)]
Sørensen M, Lauridsen MM, Montagnese S. The social and psychological impact of hepatic encephalopathy.Metab Brain Dis. 2024;39:1227-1230.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 1][Reference Citation Analysis (0)]
Chen HM, Shih FJ, Hu RH, Shih FJ, Sheu SJ. Comparing the different viewpoints on overseas transplantation demands between genders and roles.Medicine (Baltimore). 2021;100:e23650.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Verma M, Horrow J, Carmody S, Navarro V. Unmet Needs and Burden of Caregivers of Patients Being Evaluated for a Liver Transplant Are Similar to Those of Cancer Caregivers.Am J Hosp Palliat Care. 2024;41:391-397.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 1][Reference Citation Analysis (0)]
Ervin J, Taouk Y, Alfonzo LF, Hewitt B, King T. Gender differences in the association between unpaid labour and mental health in employed adults: a systematic review.Lancet Public Health. 2022;7:e775-e786.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Souza MDC, Ferreira Júnior MA, Pompeo CM, Mota FM, Cury ERJ. Transplant management in Brazil: a temporal analysis of financial investments and procedures.Rev Esc Enferm USP. 2024;58:e20240039.
[PubMed] [DOI][Cited in This Article: ][Reference Citation Analysis (0)]
Young AL, Rowe IA, Absolom K, Jones RL, Downing A, Meader N, Glaser A, Toogood GJ. The effect of Liver Transplantation on the quality of life of the recipient's main caregiver - a systematic review.Liver Int. 2017;37:794-801.
[PubMed] [DOI][Cited in This Article: ][Cited by in Crossref: 14][Cited by in RCA: 15][Article Influence: 1.9][Reference Citation Analysis (0)]
