Halpern Michael T, Fiero Mallorie H, Bell Melanie L
Health Services Administration and Policy, Temple University College of Public Health, 1301 Cecil B. Moore Ave., #533, Philadelphia, PA, 19122, USA.
Epidemiology and Biostatistics Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, 85724, USA.
Qual Life Res. 2017 Jun;26(6):1587-1595. doi: 10.1007/s11136-017-1505-9. Epub 2017 Feb 16.
Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain.
Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales.
Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden.
Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.
癌症患者的非正式照料者可能会承受巨大负担。为了制定支持这些照料者的干预措施，量化并了解照料者可能经历的负担领域以及导致每个领域负担的因素至关重要。
利用两项全国性调查的数据，即与《国家健康与老龄化趋势调查》（NHATS）相关联的《全国照料调查》（NSOC），我们确定了NHATS中所有被诊断患有癌症且有照料者参与NSOC的参与者。在一个理论模型的指导下，NSOC中与照料者健康、情绪和前景相关的22个项目被纳入因素分析，以制定反映负担领域的量表。多变量回归分析检验了照料者所从事的活动以及对照料者的支持是否与这些负担量表相关。
对373名癌症患者照料者的回答进行分析后确定了三个量表：情感负担；心理负担；以及与患者的关系。提供医疗护理管理方面的帮助与情感和心理负担增加相关，而在非医疗问题上提供帮助则增加了心理负担并恶化了与患者的关系。照料者提供直接的患者护理活动也与负担增加相关，但改善了与患者的关系。对照料者支持的使用与负担的关联呈现出混合情况。
通过使用全国代表性的癌症患者及其照料者样本以及简短的公开可用调查问题，我们提出了三个量表，涵盖了照料者负担的不同方面，这些方面对应照料者的活动和社会支持。这可能有助于制定和评估减轻照料者负担的干预措施。
