The current status and influencing factors of the benefit finding among the main caregivers of patients with Wilson Disease

Objective To investigate the current status of the benefit finding among the main caregivers of patients with Wilson disease (WD), and analyze its influencing factors.

Methods From January to May 24, a cross-sectional study method was adopted. A total of 272 WD patients and their main caregivers in the Department of Neurology of the First Affiliated Hospital of Anhui University of Chinese Medicine were conveniently selected for questionnaire surveys. The general demographic data of patients and caregivers, scores of the Caregiver Benefit Perception Questionnaire, scores of the Caregiver Response Assessment Scale, and scores of the Wisdom Scale were collected.

Results The total score of benefit finding among the main caregivers of patients with Wilson disease was (105.22 ± 17.06) points. Each dimension of the benefit finding showed a positive correlation with the self-esteem dimension, total score of resourcefulness, personal resourcefulness and social resourcefulness of positive caregiving responses (r = 0.393 to 0.512, r = 0.317 to 0.466, r = 0.286 to 0.441, r = 0.291 to 0.401, P ＜ 0.01), and a negative correlation with the health problems and financial problems dimensions of negative caregiving responses (r = –0.327 to –0.416, r = –0.334 to –0.457, P ＜ 0.01). The results of multiple linear regression analysis showed that the self-esteem of caregiver (B = 1.271, 95%CI: 0.933 to 1.610), financial problems (B = –1.337, 95%CI: –1.745 to –0.929), resourcefulness level (B = 0.241, 95%CI: 0.167 to 0.315) and caregiving experience (B = –4.727, 95%CI: –7.740 to –1.714) were the main influencing factors of caregiver benefit for patients with Wilson Disease (all P ＜ 0.01), explaining 47.0% of the total variation.

Conclusions The benefit finding among the primary caregivers of patients with Wilson Disease is at a moderate level. Medical staff should identify the psychological status of primary caregivers of patients with Wilson Disease as early as possible, and focus on caregivers with economic difficulties, no caregiving experience, low self-esteem and resourcefulness level and implement personalized interventions to improve their benefit finding.