Abstract
AimThis study aimed to explore how different dimensions of caregivers' reaction shape their caring experience, and the factors associated with different reaction patterns.DesignA second analysis of a multisite cross-sectional study were conducted. Caregivers of children with imperforate anus (IA) were enrolled in three tertiary children's hospitals in Eastern China between November 2018 and February 2019.MethodsThe caregiver's experience, stigma feeling, social support level and perception of uncertainty were assessed by Caregiver Reaction Assessment, Parent Stigma Scale, Social Support Scale and Parent's Perception of Uncertainty Scale accordingly. The demographic information of caregivers as well as the children's clinical data were collected. Latent profile analysis was conducted to determine different patterns of caregiver's reaction, and logistics analysis was used to explore the associated factors of the reaction pattern.FindingsA total number of 229 caregivers (median age = 30, quartiles: 28, 36) were included. Three distinguishable caregiving reaction types were identified (Class 1: low burden and high benefit, 4.8%; Class 2: moderate burden and benefit, 48.9%; Class 3: high burden and low benefit, 46.3%). In logistics analysis, the Class 1 and Class 2 were combined as one group due to the low population in Class 1. The marital status of caregiver (OR = 0.067, 95% CI: 0.006, 0.700, P = 0.024), IA type (OR = 1.745, 95% CI: 1.198, 2.541, P = 0.004), children aged > 2 years (OR = 3.219, 95% CI: 1.364, 7.597, P = 0.008), social support (OR = 0.907, 95% CI: 0.865, 0.951, P < 0.001) and perception of uncertainty (OR = 1.054, 95% CI: 1.026, 1.083, P < 0.001) were associated with different caregiver reaction patterns.ConclusionNearly half of the caregivers of children with IA experience reaction of high burden and low benefit, but considerable proportion of caregivers could benefit from the caregiving rather than burden from. Married caregivers may have more negative reaction, especially when children > 2 years and diagnosed with intermediate or high type of IA. However, increasing caregiver's social support and reducing perception of uncertainty may have the potential to modify their reaction pattern.
Highlights
Imperforate anus (IA) is one of the most common type of anorectal malformation, which is defined as newborn baby without normal opening in the anus area, or only fistula remained [1]
In this study, we aimed to identify different patterns of caregiver’s reaction by categorized individuals according to their Caregivers Reaction Assessments (CRA) scores, and explore the factors associated with different reaction patterns
The analysis of patterns of caregiver reaction was done based on the results of five dimensions of CRA
Summary
Imperforate anus (IA) is one of the most common type of anorectal malformation, which is defined as newborn baby without normal opening in the anus area, or only fistula remained [1]. With an incidence of 1/5000-1/2000 [2], and difficulties in prenatal diagnosis [3], IA has a higher incidence in developing countries [4], laying high medical burden on national health care. Krickenbeck classification has been widely adopted in western countries due to the careful consideration of the anatomical and prognosis features [6, 7], the Wingspread classification remained the mainstream that been used by most children’s hospital in developing countries like China [8]. Children diagnosed with IA usually need to receive at least one operation (anoplasty). For the intermediate and high type of IA, the three-staged operation usually adopted, including a colostomy, anoplasty and colostomy closure [10]. Despite the advances in operation technology, complications like constipation and incontinence are still common to see in a large number of affected children, as high as 90% children need bowel management [2]
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