Javalkar Karina, Rak Eniko, Phillips Alexandra, Haberman Cara, Ferris Maria, Van Tilburg Miranda
University of North Carolina School of Medicine, Chapel Hill, NC 27599, USA.
Department of Allied Health Sciences, University of North Carolina School of Medicine, Chapel Hill, NC 27599, USA.
Children (Basel). 2017 May 16;4(5):39. doi: 10.3390/children4050039.
The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions.
We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children's disease characteristics, health utilization, and self-management skills were associated with caregiver burden.
We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children's number of medicines and injections (β = 0.161, = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, = 0.026) and emergency room (ER) visits (β = 0.197, = 0.038), and lower child self-efficacy (β = -0.241, = 0.041) were predictors of increased caregiver burden.
We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.
患有慢性病的儿童和青少年的复杂医疗方案会对家庭产生重大影响。照顾者可能会感到负担沉重,这可能导致负面的健康后果和生活质量下降。本研究的目的是确定慢性病患儿父母照顾者负担的儿童相关预测因素和风险因素。
我们向参加胜利路口治疗营的患儿父母发放了一份经机构审查委员会(IRB)批准的在线横断面调查问卷。父母提供了有关孩子人口统计学、疾病特征和医疗保健利用情况的信息。父母还回答了改编后的 Zarit 负担访谈,该访谈测量了照顾者负担。孩子们完成了关于自我管理和自我效能的量表。线性回归分析确定了孩子的疾病特征、医疗利用情况和自我管理技能与照顾者负担之间的关联。
我们招募了150对母婴二元组。儿童参与者的平均年龄为12.23岁(±2.5),年龄范围为6至16岁。研究确定,孩子的药物和注射次数(β = 0.161,P = 0.047)、除主要疾病外还患有注意力缺陷多动障碍(ADHD)(β = 0.216,P = 0.008)、频繁拜访初级保健提供者(PCP)(β = 0.209,P = 0.026)和急诊室(ER)就诊(β = 0.197,P = 0.038),以及较低的孩子自我效能(β = -0.241,P = 0.041)是照顾者负担增加的预测因素。
我们确定了母亲照顾者负担的风险因素。未来的研究应探索与照顾者负担相关的其他儿童相关特征,并应确定针对慢性病患儿母亲的干预措施是否能带来积极结果。