Mitchell Sarah, Slowther Anne-Marie, Coad Jane, Dale Jeremy
Warwick Medical School, University of Warwick, Coventry, UK.
Faculty of Health and Life Sciences, Coventry University, Coventry, UK.
BMJ Open. 2018 Jan 21;8(1):e018266. doi: 10.1136/bmjopen-2017-018266.
The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK.
A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group.
Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
患有危及生命和生命受限疾病的儿童和青少年数量正在增加。为他们及其家庭提供高质量、及时响应的医疗保健是一项重大挑战。他们的病情往往复杂且高度不可预测。姑息治疗适用于患有危及生命和生命受限疾病的人群，但针对儿童的这些服务在可及性和范围方面差异很大。对于儿童及其家庭在接受或未接受姑息治疗方面的生活经历和偏好知之甚少。本研究旨在深入了解此类儿童和家庭的经历和偏好，以便为未来的服务提供提出建议。该研究将在英国西米德兰兹郡进行。
一项定性研究，包括对患有危及生命或生命受限疾病的5至18岁儿童及其家庭成员进行为期12个月的纵向访谈。数据分析将首先进行主题分析，然后进行叙事分析和跨案例分析，以考察在家庭层面和更广泛的医疗保健系统中随时间变化的经历和偏好。患者及公众参与（PPI）为研究的设计和实施提供了参考。研究结果将用于与患者及公众参与（PPI）小组合作，为儿童姑息治疗综合模式制定建议。
2016年9月，英国国家医疗服务体系健康研究管理局（IRAS ID：196816，REC编号：16/WM/0272）批准了伦理许可。研究结果将对英国及国际上的医疗服务提供者、政策制定者、医疗服务专员和志愿部门组织具有直接相关性。将为这些受众以及儿童及其家庭编写报告，并同时产出学术成果。
