title: Patients on the waiting list for liver transplantation: caregiver burden and stress.
abstract: Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semistructured interview, the Caregiver Burden Scale, the Inventário de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient's Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers.
authors.affiliation: Medical School and Hospital de Base, São José do Rio Preto, São Paulo, Brazil.
authors.forename: Eliane Tiemi
authors.initials: ET
authors.lastname: Miyazaki
authors.forename: Randolfo
authors.initials: R
authors.lastname: Dos Santos
authors.forename: M Cristina
authors.initials: MC
authors.lastname: Miyazaki
authors.forename: Neide M
authors.initials: NM
authors.lastname: Domingos
authors.forename: Hellen C
authors.initials: HC
authors.lastname: Felicio
authors.forename: Marcia F
authors.initials: MF
authors.lastname: Rocha
authors.forename: Paulo C
authors.initials: PC
authors.lastname: Arroyo
authors.forename: William J
authors.initials: WJ
authors.lastname: Duca
authors.forename: Renato F
authors.initials: RF
authors.lastname: Silva
authors.forename: Rita C M A
authors.initials: RC
authors.lastname: Silva
mesh_terms: D000223:Adaptation, Psychological; D001938:Brazil; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003863:Depression / Q000209:etiology; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008107:Liver Diseases / Q000523:psychology / Q000601:surgery*; D016031:Liver Transplantation / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011569:Psychiatric Status Rating Scales; D012720:Severity of Illness Index; D012934:Social Isolation; D013315:Stress, Psychological / Q000209:etiology*; D011795:Surveys and Questionnaires; D014850:Waiting Lists