未被倾听：年轻人向成人服务过渡期间高质量非计划性医院护理的障碍 - “这种镰状细胞生活”研究的证据。
Not being heard: barriers to high quality unplanned hospital care during young people's transition to adult services - evidence from 'this sickle cell life' research.
机构信息
London School of Hygiene and Tropical Medicine, London, UK.
King's College Hospital NHS Trust, London, UK.
出版信息
BMC Health Serv Res. 2019 Nov 21;19(1):876. doi: 10.1186/s12913-019-4726-5.
BACKGROUND
Young people's experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.
METHODS
We conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016-2017 with young people with SCD aged 13-21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2-3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.
RESULTS
Participants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.
CONCLUSIONS
Our study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people's voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.
背景
年轻人在进入成人服务时的医疗体验可能对他们的健康产生重大影响，而镰状细胞病 (SCD) 年轻人的过渡时期需要改进。在这项研究中，我们探讨了 SCD 年轻人在这段过渡时期如何体验医疗保健。
方法
我们进行了一项合作式纵向定性研究，2016-2017 年期间在英格兰的两个城市中对 13-21 岁（平均年龄 16.6 岁）的 SCD 年轻人进行了 80 次访谈。我们招募了 48 名参与者（30 名女性，18 名男性）：27 次访谈为一次性访谈，53 次重复访谈约 18 个月进行 2-3 次。我们采用了一种归纳分析方法，结合了扎根理论和主题分析的元素。
结果
参与者报告说，在疼痛发作期间在急症室接受的护理以及在计划外医疗保健期间作为住院患者在医院病房接受的护理存在重大问题。他们在获得疼痛缓解方面存在延迟，他们的基本护理需求并未得到满足。参与者表示，非专科医疗保健人员对 SCD 的了解似乎不足，当他们试图与工作人员合作改善护理时，工作人员似乎不愿意听取他们的意见或根据他们的意见采取行动。参与者表示，他们在成人病房中感到不自在，并且对成人病房与儿科病房之间的差异感到不适。由于他们的经历，他们试图避免住院，试图在家中管理疼痛发作，并仅在万不得已时才寻求计划外的医院护理。相比之下，他们在计划内常规护理期间并没有报告在 SCD 专科服务中出现问题。
结论
我们的研究强调需要改进服务，使其对年轻人友好和响应年轻人的需求，包括培训工作人员掌握 SCD 特定护理、同情心护理和沟通技巧，这将帮助他们引出并响应年轻人的声音，确保他们参与塑造自己的医疗保健。如果年轻人无法使用过渡技能（自我管理、自我倡导），或者由他们担心在其病情方面没有足够医学能力的工作人员进行治疗，他们可能会对服务失去信任，从而可能影响他们自己的健康。
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