Children's Outcomes Research Program, Children's Hospital Colorado, Aurora, CO, USA.
Health Soc Care Community. 2013 Nov;21(6):634-43. doi: 10.1111/hsc.12049. Epub 2013 May 6.
There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health-care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at-home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi-structured in-depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at-home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home-based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at-home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post-discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre-surgical, surgical and at-home recovery phases.
美国有超过 1200 万名有特殊医疗需求的儿童(CSHCN),其中许多人需要专门的医疗保健来治疗慢性身体和发育状况。本研究是对美国西部一家儿童医院参与脊柱外科护理计划的 CSHCN 及其家庭照顾者的方案、手术和家庭康复体验的定性研究。该计划旨在管理增加的手术风险和从医院到家庭的护理过渡,为患有严重脊柱侧凸的儿童进行脊柱融合手术。我们对 14 名手术团队成员和 16 名儿童的家庭照顾者进行了 30 次半结构化深入访谈,这些儿童在 2006 年参加了该计划评估和脊柱手术。2008 年和 2009 年在医院或家庭地点收集数据,以收集家庭对计划参与的反馈,并告知家庭在家庭康复期间计划支持的充分性。数据通过反思性团队和内容分析方法进行分析。结果表明,该计划在改善术前手术评估和帮助家庭预测手术体验和出院的某些方面方面是有效的。然而,脊柱融合手术的影响以及随后向家庭护理的过渡对患者及其照顾者来说是非常情绪化的。我们的数据表明,计划提供者低估了患者和家庭所经历的情绪创伤的程度,尤其是在家庭康复过程中。数据还表明,提供者和照顾者对手术的期望存在显著差异。照顾者对他们的康复体验感到失望,以及对出院后支持的缺乏,影响了他们对手术体验的解释和看法。这项研究对手术护理计划的启示包括需要评估和提供支持,以减轻患者和照顾者在术前、手术和家庭康复阶段所经历的身体、社会和情绪负担。