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.
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. 

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.

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


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

Related news items

Social media posts on medication use during pregnancy often incorrect

23 August 2019

Dutch social media regularly post about the safety of medicines for pregnant women. Many pregnant women use these posts as a source of information. A new analysis shows, however, that information found on social media about the risk of medication use often does not correspond with guidelines.

read more

Drug-induced interstitial lung disease in advanced breast cancer patients receiving everolimus

22 August 2019

In Targeted Oncology, Annelieke Willemsen, Carla van Herpen and colleagues, showed that pulmonary function test with diffusion capacity of the lungs for carbon monoxide and serum biomarkers can be of aid to differentiate everolimus-related interstitial lung disease from other respiratory problems.

read more

Patient trust and participation in cell biological research

21 August 2019

Alessandra Cambi and Gert Olthuis, discuss key ethical issues inherent in the development and the value of building trust and trustworthiness.

read more

European Commission Initiative on Breast Cancer (ECIBC) Guidelines

13 August 2019

In Annals of internal medicine Mireille Broeders and colleagues from the ECIBC Guidelines Development Group described the methods used to develop person-centered evidence-based recommendations for screening and diagnosis of breast cancer.

read more

Circulation publication for exercise physiologists

13 August 2019

Thijs Eijsvogels and Vincent Aengevaeren showed that exercise-incuded elevations of troponin concentrations are predictive of major adverse cardiovascular events and mortality.

read more

DELA, Radboudumc and Games for Health start a new project to fight loneliness among elderly using games

12 August 2019

More than half of people aged 75 and over feel their selves lonely every now and then. A special collaboration between DELA, Radboudumc, and Games for Health will investigate whether joined gaming between elderly and young people can alleviate this social problem.

read more