Palliative care for patients with a - Substance use disorder and multiple problems

28 August 2018

In BMC Pallliative care Anne Ebenau, Marieke Groot and colleagues described the methodology of a qualitative study on palliative care for people with substance use disorder.

This article aims to give insight in how to do conduct research in such a vulnerable and under investigated study population.

Background
The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals' responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals', patients' and proxies' perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder.

Methods
A qualitative study with patients, proxies and healthcare professionals. Semi-structured interviews will be held with 10-15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi-structured interviews will also be held with 5-10 proxies. Healthcare professionals, volunteers and/or 'experts-by-experience' (n = 24-40) will be participating in semi-structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings.

Discussion
Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase

Publication

Palliative care for patients with a substance use disorder and multiple problems: a study protocol
Ebenau A, Dijkstra B, Stal-Klapwijk M, TGer Huurne C, Blom A, Vissers K, Groot M.

Anne Ebenau and Marieke Groot are both members of theme Healthcare improvement science

Want to know more about these subjects? Click on the buttons below for more news.

RIHS Anesthesiology Healthcare improvement science

Related news items

TropIQ seeks new mosquito repellents

21 September 2021

TropIQ Health Sciences, a Radboudumc spin-off, has received a 1.3 million USD grant from the Bill & Melinda Gates Foundation to track down new mosquito repellents.

New start-up Patholyt will bring AI research into pathology diagnostics

21 September 2021

Patholyt is on a mission to accelerate the adoption of artificial intelligence in pathology diagnostics and improve the chances of cancer patients worldwide. Patholyt is a spin-off from Radboudumc, a frontrunner in computational pathology research.

Treatment of most common skin cancer can sometimes wait

20 September 2021

Not treating but keeping an eye on the cancer is also an option

Donor limbs last longer thanks to improved preservation technology

17 September 2021

Research by Anne Sophie supported Maartje's double hand transplantation

Young Radboudumc researchers receive grant to engage in bio-medical and health research that is off the beaten path

16 September 2021

The ZonMw Off Road program is once again giving young scientists the opportunity to conduct innovative research in medical and/or health care. This research is off the beaten track and aims to bring about new insights and unexpected breakthroughs for healthcare and healthcare innovation.

Infections increase risk to develop dementia

16 September 2021

In a recently published study, Radboudumc researchers investigated the effects of infectious events on cognitive decline and the development of dementia and its possible structural underpinning using pre- and post-infection MRI of the brain.