Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
BMJ Open. 2017 Sep 24;7(9):e015242. doi: 10.1136/bmjopen-2016-015242.
Less than 1% of children have complex medical conditions but account for one-third of all child health spending. The impact of suboptimal management of this group of children can have a considerable effect on families as well as services. Some families appear to cope more easily than others do, but there are compelling reasons to suggest that effective interventions may improve family coping and ultimately outcomes. Hospitalisation of their child presents a unique set of pressures and challenges for parents, but also an opportunity to intervene. However, the evidence is not well described in relation to this group of families. The primary objective of this scoping review is to identify parent and family-based interventions available to improve parental health, well-being, functioning or skills in the context of a child's medically complex hospital admission and hospital care.
Nine bibliographic databases will be searched spanning medicine, nursing, psychology, education, social work and the grey literature using a combination of index terms and text words related to parents, childhood, chronic illness and interventions. Study eligibility will be assessed by two researchers against preset inclusion and exclusion criteria. Key information from each study will be extracted and charted including year of publication, condition, severity, geographical setting, key concepts and definitions, aims, study population and sample size, methodology/methods, interventions, outcomes and key findings. Directed qualitative content analysis will be used to make sense of narrative findings within the included studies. Results will be presented which summarise the scope of the literature and identify key findings, potential areas for evidence synthesis and research gaps.
Ethical approval is not required. The results of this review will be disseminated through publication in a peer-reviewed journal and feedback to stakeholders during the development of a hospital-based intervention.
不到 1%的儿童患有复杂的医疗状况，但却占儿童健康总支出的三分之一。这组儿童的管理不善会对家庭和服务产生相当大的影响。有些家庭似乎比其他家庭更容易应对，但有充分的理由表明，有效的干预措施可能会改善家庭应对能力，并最终改善结果。孩子住院会给父母带来一系列独特的压力和挑战，但也是干预的机会。然而，针对这组家庭的证据描述并不充分。本研究的主要目的是确定在儿童复杂住院和住院护理背景下，可用于改善父母健康、福祉、功能或技能的基于父母和家庭的干预措施。
将使用医学、护理、心理学、教育、社会工作和灰色文献中的 9 个文献数据库进行搜索，使用与父母、儿童、慢性病和干预措施相关的索引术语和文本词的组合进行搜索。两名研究人员将根据预设的纳入和排除标准评估研究的资格。将从每个研究中提取和图表关键信息，包括出版年份、条件、严重程度、地理环境、关键概念和定义、目标、研究人群和样本量、方法/方法、干预措施、结果和主要发现。将使用定向定性内容分析来理解纳入研究中的叙述性发现。结果将总结文献的范围，并确定主要发现、潜在的证据综合领域和研究空白。
不需要伦理批准。本研究结果将通过在同行评议期刊上发表以及在开发基于医院的干预措施期间向利益相关者反馈来传播。
