Introduction When people are dying and unable to take oral medication, injectable medication is commonly used, usually administered by healthcare professionals. There may be delays to symptom relief due to travel to the person’s home. In a randomised controlled trial (RCT) previously reported, nasal fentanyl (NF) or buccal midazolam (BM) were administered by lay carers in a hospice.
Objective (1) To report experiences of lay carers who administered NF and BM for symptom control and (2) To use feedback to develop guidance informing a future definitive RCT to determine whether NF and BM administered by lay carers can lead to timely, improved symptom control for people dying at home and fewer ‘emergency’ community nursing visits than standard breakthrough medication administered by healthcare professionals.
Material and methods Semistructured interviews with lay carers who gave trial medication were conducted. Interview data were analysed using a stage by stage method to code and categorise transcripts.
Findings The six themes were: (1) Participation—lay carers welcomed the opportunity to administer medication; (2) Ease of use—lay carers found preparations easy to use; (3) How things could have been done differently—lay carers would have liked access to trial drugs at home; (4) Training—lay carers were happy with the training they received; (5) Timing—lay carers liked the immediacy of trial drugs and (6) Evaluation—assessing symptom intensity and drug efficacy.
Conclusions Participation was acceptable to patients and lay carers, and beneficial for symptom relief. The findings will inform planning for a future community-based study.
- drug administration
- home care
- hospice care
- symptoms and symptom management
- terminal care
Statistics from Altmetric.com
Contributors PP conceived the study. AP and EH made substantial contribution to its design. AP and BD collected the data. AP and PP analysed the data. VT gave methodological advice. All authors critically revised drafts of the paper. They also read and approved the final version of the manuscript. PP is the guarantor.
Funding Kyowa Kirin provided PecFent supplies free of charge and lock boxes for the trial. Special Products provided Epistatus free of charge. Both companies provided funding to enable the study to be conducted.
Competing interests PP and EH have in the past received financial support to attend educational events from Kyowa Kirin. Neither drug company gave any input to this submission.
Patient consent for publication Not required.
Ethics approval The study was approved by Gloucestershire Research Support Service, the Sue Ryder Research Governance Group, the National Research Ethics Service Committee South Central – Berkshire and the MHRA. The clinical trial was registered in EudraCT, the EMEA database for clinical trials (code EUDRACT 2013-005009-30).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available on reasonable request. Unpublished data are held by Sue Ryder Leckhampton Court Hospice.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.