Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Am J Kidney Dis. 2018 Oct;72(4):547-559. doi: 10.1053/j.ajkd.2018.05.005. Epub 2018 Jul 3.
BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making.
Qualitative study.
SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups.
Transcripts were analyzed thematically.
We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden).
Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics.
Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.
有效的沟通和共同决策可以改善医疗护理质量和患者结局，但在儿科慢性病中可能特别具有挑战性，因为儿童依赖其父母和临床医生来管理复杂的医疗和发育需求。本研究旨在描述慢性肾脏病（CKD）患儿及其父母对沟通和决策的看法。
定性研究。
来自澳大利亚、加拿大和美国 6 个城市的 6 个中心的 34 名 CKD 患儿和 62 名父母参加了 16 个焦点小组。
对转录本进行主题分析。
我们确定了 4 个主题：（1）知识不平衡导致的无力感（准备不足和信息不足、怀疑审查和技术不足）；（2）认识自身专业知识（父母关系中独特的直觉和本能、新兴的智慧和信心、确定控制和参与的机会、并赋予参与孩子的权力）；（3）努力维护自身的首要事项（协商更广泛的生活影响、选择推迟决策负担、过度保护和否决、努力表达自身偏好）；（4）管理孩子的参与（尊重孩子的专业知识、将“危险”行为归因于叛逆、保护孩子免受疾病负担）。
仅招募了会说英语的参与者，这可能限制研究结果的可转移性。我们从患儿和父母的角度收集数据；然而，临床医生的观点可能进一步了解儿科沟通和决策的困难。
父母重视与临床医生的合作关系，并考虑其孩子疾病的长期和生活质量影响。CKD 患儿希望更多地参与治疗决策，但受到脆弱性、恐惧和不确定性的限制。需要支持孩子更好地使他或她能够成为决策的合作伙伴，并为他或她的成年期做好准备。需要进行协作和知情决策，以解决儿童和父母的优先事项和关切。
