Morrison M, Kelly E H, Russell H F, Vogel L C
Department of Research, Shriners Hospitals for Children, Philadelphia, PA, USA.
Department of Spinal Cord Injury Research, Shriners Hospitals for Children, Chicago, IL, USA.
Spinal Cord. 2017 Jan;55(1):52-58. doi: 10.1038/sc.2016.83. Epub 2016 Jun 21.
Mixed-method study.
Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes.
Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States.
Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL.
Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning.
Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.
混合方法研究。
描述照顾者对养育脊髓损伤（SCI）青少年的收获的看法，并探讨收获与儿童/照顾者人口统计学特征及儿童心理社会结局之间的关系。
数据收集在美国单一医院系统内的三家儿科专科医院进行。
178名1至18岁儿童的自认为主要照顾者回答了问题：“养育患有SCI的孩子，最有收获的是什么？” 并完成了一份关于其孩子健康相关生活质量（HRQOL）的问卷。7至18岁的参与者（n = 134）还完成了评估其社区参与、焦虑、抑郁和HRQOL的工具。
出现了四个收获主题：增强的复原力（例如，我的孩子、自我和家庭的复原力）、照顾者与孩子的关系、与他人建立联系和学习。自我报告的学校和总体心理社会HRQOL较低的儿童的照顾者更有可能报告其孩子具有增强的复原力。孩子抑郁症状较少、参与水平较低且受伤和接受访谈时年龄较大的照顾者，会因增强的照顾者与孩子的关系而感到有收获。参与范围更广、学校和心理社会HRQOL较高的儿童的照顾者报告了与他人建立联系。最后，失业的照顾者和受教育程度较低的照顾者更有可能报告学习。
照顾者报告了养育患有SCI的孩子有多种收获，并且收获与人口统计学和儿童心理社会结局之间出现了几种关系。未来的研究应进一步检查照顾者的积极经历，以及关注优势是否可能为患有SCI的儿童带来更好的长期结局。
