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Home symptom management training programme: carer evaluation
  1. Deborah Parker1,
  2. Liz Reymond2,3,
  3. Karen Cooper2,
  4. Jennifer Tieman4 and
  5. Serra Ivynian1
  1. 1 Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney, Sydney, New South Wales, Australia
  2. 2 Brisbane South Palliative Care Collaborative, Brisbane, Queensland, Australia
  3. 3 Griffith University School of Medicine, Gold Coast, Queensland, Australia
  4. 4 Research Centre for Palliative Care Death & Dying, Flinders University, Adelaide, South Australia, Australia
  1. Correspondence to Dr Serra Ivynian, University of Technology Sydney, Sydney, New South Wales, Australia; Serra.Ivynian{at}uts.edu.au

Abstract

Objectives Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers’ confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines.

Methods Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview.

Results Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses.

Conclusion The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

  • palliative care
  • subcutaneous medicine
  • carers
  • symptom management

Data availability statement

No data are available.

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This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors DP, ER, KC and JT contributed to the planning, design and implementation of the research. DP and SI contributed to the collection and analysis of the results, and all authors to the writing and critical revision of the manuscript. DP will act as guarantor.

  • Funding This work was supported by the Australian Government Department of Health and Ageing, National Palliative Care Projects.

  • Competing interests None declared.

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