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Qualitative research
Original research
Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System
  1. Holly Standing1,
  2. Rebecca Patterson2,
  3. Mark Lee3,
  4. Sonia Michelle Dalkin4,
  5. Monique Lhussier4,
  6. Angela Bate1,
  7. Catherine Exley5,
  8. Katie Brittain5
  1. 1Department of Nursing, Midwifery and Health, Northumbria University, Newcastle upon Tyne, UK
  2. 2Research and Innovation Services, Northumbria University, Newcastle upon Tyne, UK
  3. 3St Benedict's Hopsice and Specialist Palliative Care Centre, Sunderland, UK
  4. 4Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK
  5. 5Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  1. Correspondence to Dr Holly Standing; holly.standing{at}northumbria.ac.uk

Abstract

Objectives To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.

Design Qualitative study using interviews and focus groups.

Setting Health and Social Care Services in the North of England.

Participants 71 participants, 62 health and social care professionals, 9 patients and family members.

Results Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.

Conclusions EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

  • organisation of health services
  • palliative care
  • qualitative research
  • information technology
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/bmjopen-2020-037483

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    Footnotes

    • Twitter @SoniaDalkin

    • Contributors All authors contributed to the design of the study. HS, KB and RP conducted the data collection and analysis. HS and KB drafted the manuscript. All authors revised the article critically for important intellectual content. All authors approved the submitted draft.

    • Funding This paper summaries independent research funded by Connected Health Cities

    • Disclaimer The views expressed are those of the authors and not necessarily those of Connected Health Cities.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Patient consent for publication Not required.

    • Ethics approval Ethical approval for this study was obtained from the Health Research Authority (REC reference: 17/LO/2100).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available upon reasonable request. Given the sensitive nature of this qualitative research project the raw data generated and analysed during the current study are not publicly available to preserve the anonymity of participants. However, we are willing to make portions of transcripts (with any identifying information redacted) available upon reasonable request. Interested persons should contact the corresponding author.