Murphy N A, Christian B, Caplin D A, Young P C
Department of Pediatrics, University of Utah, Salt Lake City, UT 84132, USA.
Child Care Health Dev. 2007 Mar;33(2):180-7. doi: 10.1111/j.1365-2214.2006.00644.x.
There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities.
Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information.
The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy.
Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health.
据估计，美国有590万重度残疾儿童，其中大多数由其父母和家人在家照料。间接证据表明，照料者健康状况不佳可能导致慢性病和残疾儿童反复住院以及被安置到家庭之外。更多地了解与照料者健康相关的需求将有助于改进现有服务，并制定新策略以维持照料者发挥其重要作用。本研究探讨了照料者对长期非正式照料残疾儿童对健康影响的看法。
居住在犹他州城市、郊区和农村地区的40名残疾儿童的父母/照料者完成了问卷调查，并参加了焦点小组，探讨他们对自身当前身体和情绪健康的感受，以及他们认为对自身健康有损害或促进作用的因素。会议进行了录音和转录。对问卷回复生成了汇总统计数据。根据信息集群中出现的主题和模式对焦点小组内容进行了分析。
照料经历由五个主题体现：（i）照料压力；（ii）对照料者健康的负面影响；（iii）分担负担；（iv）对未来的担忧；（v）照料者应对策略。41%的照料者报告称，他们的健康状况在过去一年中恶化，并将这些变化归因于时间不足、缺乏掌控以及心理社会能量下降。
残疾儿童的照料者描述了长期非正式照料对身体、情绪和功能健康的负面后果。他们对于照料中对其健康有正面和负面影响的那些方面有着重要见解。解决这些问题的干预措施可能有潜力对照料者健康产生积极影响。
