Not being heard: barriers to high quality unplanned hospital care during young people\u2019s transition to adult services \u2013 evidence from \u2018this sickle cell life\u2019 research

Alicia Renedo,Cicely Marston,Sam Miles,John O Warner,Andrea Leigh,Paul Telfer,Subarna Chakravorty

doi:10.1186/s12913-019-4726-5

Abstract

BackgroundYoung 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.MethodsWe 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.ResultsParticipants 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.ConclusionsOur 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.

Highlights

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
Participants reported smooth transitions into adult specialist care, but poor experiences with non-specialist, unplanned and emergency care. They did not report any particular problems with routine haematology clinic appointments, either during transition to adult services, or once they were established in those services
Barriers to receiving good, personalised, and responsive care: not being heard Being denied timely and adequate pain relief Young people reported that when they went to nonspecialist services such as A&E departments and stayed in adult wards for acute painful episodes, they experienced delays in receiving pain relief and did not receive adequate doses or appropriate types of analgesia

Summary

Introduction

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. Improving young people’s health and their transition to adult care is a global priority [1]. Young people’s experiences of care during the overall process of transition, including the support they receive to adjust to adult services One chronic condition where there is an urgent need to improve the health transition process is sickle cell disease (SCD) [8]. SCD is a complex multisystem inherited blood condition characterised by episodes of acute and often severe pain, and progressive chronic organ damage which causes significant morbidity and mortality [9, 10]. Acute pain episodes can be accompanied by other complications such as acute chest syndrome, acute stroke, and infections [11] which can have profound, long term health implications

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