Imperial College London
Alternate

DrSubarnaChakravorty

Faculty of Medicine, Department of Immunology and Inflammation

Honorary Clinical Senior Lecturer
 
 
 
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Contact

 

+44 (0)20 3299 3773s.chakravorty

 
 
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Location

 

Medical SchoolSt Mary's Campus

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Summary

 

Publications

Citation

BibTex format

@article{Renedo:2019:10.1186/s12913-019-4726-5,
author = {Renedo, A and Miles, S and Chakravorty, S and Leigh, A and Telfer, P and Warner, JO and Marston, C},
doi = {10.1186/s12913-019-4726-5},
journal = {BMC Health Services Research},
title = {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},
url = {http://dx.doi.org/10.1186/s12913-019-4726-5},
volume = {19},
year = {2019}
}
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RIS format (EndNote, RefMan)

TY  - JOUR
AB  - 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 involv
AU  - Renedo,A
AU  - Miles,S
AU  - Chakravorty,S
AU  - Leigh,A
AU  - Telfer,P
AU  - Warner,JO
AU  - Marston,C
DO  - 10.1186/s12913-019-4726-5
PY  - 2019///
SN  - 1472-6963
TI  - 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
T2  - BMC Health Services Research
UR  - http://dx.doi.org/10.1186/s12913-019-4726-5
UR  - https://www.ncbi.nlm.nih.gov/pubmed/31752858
UR  - http://hdl.handle.net/10044/1/75335
VL  - 19
ER  -
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