Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
Brookdale Center for Healthy Aging, Hunter College, City University of New York, New York, NY, USA.
Psychol Health. 2024 Jan-Feb;39(2):216-232. doi: 10.1080/08870446.2022.2057494. Epub 2022 May 27.
Caregivers of children with rare diseases often consider caregiving to be a rewarding experience, despite high levels of burden. The present study examined associations between caregiver stress and positive aspects of caregiving (PAC); investigated associations between interpersonal coping strategies and PAC; and determined whether coping strategies moderated associations between stressors and PAC.
Survey data came from a study on caregivers across different caregiving conditions, including caregivers of children diagnosed with inherited metabolic conditions ( = 167), undiagnosed diseases ( = 23), and caregivers of typically-developing children ( = 74).
Positive Aspects of Caregiving (PAC) scale.
Results from generalized linear models indicated that perceived burden was not associated with PAC. Venting was negatively associated with PAC (= -0.09, =.03), whereas emotional support was associated with increased PAC for caregivers of children with undiagnosed conditions ( = 0.15, =.02). Care needs were associated with greater PAC among caregivers engaged in high levels of emotional support coping ( = 0.10, =.01) and venting ( = 0.09, =.03).
These findings illuminate important differences in PAC based on the caregiving condition, and aspects of the caregiver stress process model that might be universal to caregivers. Results inform stress process theory and highlight the potential of support-based interventions for promoting PAC.
Supplemental data for this article is available online at.
尽管儿童罕见病照顾者承受着巨大的负担，但他们往往认为照顾是一种有回报的经历。本研究调查了照顾者压力与积极照顾方面（PAC）之间的关系；研究了人际应对策略与 PAC 之间的关系；并确定应对策略是否调节了压力源与 PAC 之间的关系。
调查数据来自一项针对不同照顾条件下照顾者的研究，包括遗传性代谢疾病患儿的照顾者（ = 167）、未确诊疾病患儿的照顾者（ = 23）和发育正常儿童的照顾者（ = 74）。
积极照顾方面（PAC）量表。
广义线性模型的结果表明，感知负担与 PAC 无关。倾诉与 PAC 呈负相关（ = -0.09， =.03），而情感支持与未确诊疾病患儿照顾者的 PAC 呈正相关（ = 0.15， =.02）。对于情感支持应对水平较高的照顾者（ = 0.10， =.01）和倾诉应对水平较高的照顾者（ = 0.09， =.03），照顾需求与 PAC 呈正相关。
这些发现根据照顾条件阐明了 PAC 的重要差异，以及可能适用于所有照顾者的照顾者压力过程模型的各个方面。研究结果为压力过程理论提供了信息，并强调了以支持为基础的干预措施促进 PAC 的潜力。
