Development of an intervention to improve AccesS to living-donor Kidney transplantation (The ASK study)

Pippa K Bailey, Yoav Ben-Shlomo, Fergus J Caskey, Mohammed Al-Talib, Hannah Lyons, Adarsh Babu, Liise K Kayler, Lucy E Selman

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Abstract

A living-donor kidney transplant (LDKT) is one of the best treatments for kidney failure. The UK’s LDKT activity falls behind that of many other countries, and there is evidence of socioeconomic inequity in access. We aimed to develop a UK-specific multicomponent intervention to support eligible individuals to access a LDKT. The intervention was designed to support those who are socioeconomically-deprived and currently disadvantaged, by targeting mediators of inequity identified in earlier work. We identified three existing interventions in the literature which target these mediators: a) the Norway model (healthcare practitioners contact patients’ family with information about kidney donation), b) a home education model, and c) a Transplant candidate advocate model. We undertook intervention development using the Person-Based Approach (PBA). We performed in-depth qualitative interviews with people with advanced kidney disease (n = 13), their family members (n = 4), and renal and transplant healthcare practitioners (n = 15), analysed using thematic analysis. We investigated participant views on each proposed intervention component. We drafted intervention resources and revised these in light of comments from qualitative ‘think-aloud’ interviews. Four general themes were identified: i) Perceived cultural and societal norms; ii) Influence of family on decision-making; iii) Resource limitation, and iv) Evidence of effectiveness. For each intervention discussed, we identified three themes: for the Norway model: i) Overcoming communication barriers and assumptions; ii) Request from an official third party, and iii) Risk of coercion; for the home education model: i) Intragroup dynamics; ii) Avoidance of hospital, and iii) Burdens on participants; and for the transplant candidate advocates model: i) Vested interest of advocates; ii) Time commitment, and iii) Risk of misinformation. We used these results to develop a multicomponent intervention which comprises components from existing interventions that have been adapted to increase acceptability and engagement in a UK population. This will be evaluated in a future randomised controlled trial.
Original languageEnglish
Article numbere0253667
Number of pages23
JournalPLoS ONE
Volume16
Issue number6
DOIs
Publication statusPublished - 25 Jun 2021

Bibliographical note

Funding Information:
This research was funded in whole by the Wellcome Trust (PKB is funded by a Wellcome Trust Clinical Research Career Development Fellowship (214554/Z/18/Z) https://wellcome.org). LES is funded by a National Institute for Health Research (NIHR) Career Development Fellowship (https://nihr.ac.uk). MAT is funded by an NIHR Academic Clinical Fellowship (https://nihr.ac.uk). YBS is the cross-cutting methodological theme lead for the NIHR Applied Research Collaboration West (ARC West) (https://arc-w.nihr.ac.uk/). The animations evaluated were developed by LKK in USA Health Resources and Services Administration (HRSA) funded work (Grant No. R39OT31887, https://www.hrsa.gov). No funding body had any influence on the conception, design, analysis, or production of this manuscript, and the views it expresses are not necessarily those of any funding organisations. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the Wellcome Trust, the HRSA, the National Institute for Health Research or the Department of Health.

Publisher Copyright:
© 2021 Bailey et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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