Palliative care for patients with a substance use disorder and multiple problems: a study protocol
Abstract 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, i...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2018-08-01
|
| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12904-018-0351-z |
| _version_ | 1818578349356744704 |
|---|---|
| author | Anne Ebenau Boukje Dijkstra Marianne Stal-Klapwijk Chantal ter Huurne Ans Blom Kris Vissers Marieke Groot |
| author_facet | Anne Ebenau Boukje Dijkstra Marianne Stal-Klapwijk Chantal ter Huurne Ans Blom Kris Vissers Marieke Groot |
| author_sort | Anne Ebenau |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-16T06:44:24Z |
| format | Article |
| id | doaj.art-5bd011751c9946d19a542de700aa2f9a |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-16T06:44:24Z |
| publishDate | 2018-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-5bd011751c9946d19a542de700aa2f9a2022-12-21T22:40:36ZengBMCBMC Palliative Care1472-684X2018-08-011711910.1186/s12904-018-0351-zPalliative care for patients with a substance use disorder and multiple problems: a study protocolAnne Ebenau0Boukje Dijkstra1Marianne Stal-Klapwijk2Chantal ter Huurne3Ans Blom4Kris Vissers5Marieke Groot6Salvation Army, Central NetherlandsNijmegen Institute for Scientist-Practitioners in Addiction (NISPA)Salvation Army, Central NetherlandsTactus Addiction care, Lokatie RipperdastraatNetwork Palliative Care region Arnhem and de Liemers, Hospice RozenheuvelDepartment of Anesthesiology, Radboud University Medical Center, Pain and Palliative Care, Expertise Center for Palliative CareSalvation Army, Central NetherlandsAbstract 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.http://link.springer.com/article/10.1186/s12904-018-0351-zQualitative researchPalliative careAddictionSubstance use disorderVulnerabilityStudy protocol |
| spellingShingle | Anne Ebenau Boukje Dijkstra Marianne Stal-Klapwijk Chantal ter Huurne Ans Blom Kris Vissers Marieke Groot Palliative care for patients with a substance use disorder and multiple problems: a study protocol BMC Palliative Care Qualitative research Palliative care Addiction Substance use disorder Vulnerability Study protocol |
| title | Palliative care for patients with a substance use disorder and multiple problems: a study protocol |
| title_full | Palliative care for patients with a substance use disorder and multiple problems: a study protocol |
| title_fullStr | Palliative care for patients with a substance use disorder and multiple problems: a study protocol |
| title_full_unstemmed | Palliative care for patients with a substance use disorder and multiple problems: a study protocol |
| title_short | Palliative care for patients with a substance use disorder and multiple problems: a study protocol |
| title_sort | palliative care for patients with a substance use disorder and multiple problems a study protocol |
| topic | Qualitative research Palliative care Addiction Substance use disorder Vulnerability Study protocol |
| url | http://link.springer.com/article/10.1186/s12904-018-0351-z |
| work_keys_str_mv | AT anneebenau palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT boukjedijkstra palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT mariannestalklapwijk palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT chantalterhuurne palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT ansblom palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT krisvissers palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol AT mariekegroot palliativecareforpatientswithasubstanceusedisorderandmultipleproblemsastudyprotocol |