Dataset Information

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.

ABSTRACT:

Background

Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients' care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase.

Methods

Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed.

Results

Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the 'here-and-the-now'); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies' experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients.

Conclusions

This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients' closed and avoiding communication. Furthermore, some of patients' EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed.

SUBMITTER: Ebenau A

PROVIDER: S-EPMC6626397 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Publications

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.

Ebenau Anne A Dijkstra Boukje B Ter Huurne Chantal C Hasselaar Jeroen J Vissers Kris K Groot Marieke M

BMC palliative care 20190712 1

<h4>Background</h4>Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients' care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Fur ...[more]

PMID: 31299956

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Project description:BACKGROUND:There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). METHODS:A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis. RESULTS:HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. CONCLUSIONS:Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.

Project description:BackgroundThe 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.MethodsA 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.DiscussionEveryone 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.

Project description:AimTo capture pandemic experiences of people with opioid use disorder (OUD) to better inform the programs that serve them.DesignWe designed, conducted, and analyzed semi-structured qualitative interviews using grounded theory. We conducted interviews until theme saturation was reached and we iteratively developed a codebook of emerging themes. Individuals with lived experience of substance use provided feedback at all steps of the study.SettingWe conducted phone or in-person interviews in compliance with physical distancing and public health regulations in outdoor Vancouver parks or well-ventilated indoor spaces between June to September 2020.ParticipantsUsing purposive sampling, we recruited participants (n = 19) who were individuals with OUD enrolled in an intensive community outreach program, had visited one of two emergency departments, were over 18, lived within catchment, and were not already receiving opioid agonist therapy.MeasurementsWe audio-recorded interviews, which were later transcribed verbatim and checked for accuracy while removing all identifiers. Interviews explored participants' knowledge of COVID-19 and related safety measures, changes to drug use and healthcare services, and community impacts of COVID-19.ResultsOne third of participants were women, approximately two thirds had stable housing, and ages ranged between 23 and 59 years old. Participants were knowledgeable on COVID-19 public health measures. Some participants noted that fear decreased social connection and reluctance to help reverse overdoses; others expressed pride in community cohesion during crisis. Several participants mentioned decreased access to housing, harm reduction, and medical care services. Several participants reported using drugs alone more frequently, consuming different or fewer drugs because of supply shortages, or using more drugs to replace lost activities.ConclusionCOVID-19 had profound effects on the social lives, access to services, and risk-taking behaviour of people with opioid use disorder. Pandemic public health measures must include risk mitigation strategies to maintain access to critical opioid-related services.

Project description:BackgroundLesbian, gay, bisexual, transgender, queer, and other LGBTQ populations (LGBTQ+; e.g., asexual individuals) have higher rates of substance use (SU) and disorders (SUD) compared to heterosexual and cisgender populations. Such disparities can be attributed to minority stress, including stigma and discrimination in healthcare settings. LGBTQ+-affirming SU treatment and related services remain limited. The purpose of this exploratory qualitative descriptive study was to characterize LGBTQ+ people's experiences in SU services and recommendations for LGBTQ+- affirming care.MethodsWe conducted demographic surveys (characterized using descriptive statistics) and individual qualitative interviews with N = 23 LGBTQ+ people. We employed flexible coding and a thematic analysis approach to describe participants' experiences with stigma, discrimination, and support within SU services at the patient-, staff-, and organizational-level; and participant recommendations for how to make such services LGBTQ+-affirming. We highlighted components of minority stress and mitigators of adverse stress responses throughout our thematic analysis.ResultsPatient-level experiences included bullying, name-calling, sexual harassment, and physical distancing from peers; and support via community-building with LGBTQ+ peers. Staff-level experiences included name-calling, denial of services, misgendering, lack of intervention in peer bullying, and assumptions about participants' sexuality; and support via staff advocacy for LGBTQ+ patients, holistic treatment models, and openly LGBTQ+ staff. Organizational-level experiences included stigma in binary gendered program structures; and support from programs with gender-affirming groups and housing, and in visual cues (e.g., rainbow flags) of affirming care. Stigma and discrimination led to minority stress processes like identity concealment and stress coping responses like SU relapse; support facilitated SU treatment engagement and retention. Recommendations for LGBTQ+-affirming care included non-discrimination policies, LGBTQ+-specific programming, hiring LGBTQ+ staff, routine staff sensitivity training, and gender-inclusive program structures.ConclusionsLGBTQ+ people experience stigma and discrimination within SU services; supportive and affirming care is vital to reducing treatment barriers and promoting positive health outcomes. The current study offers concrete recommendations for how to deliver LGBTQ+-affirming care, which could reduce SU disparities and drug overdose mortality overall.

Dataset Information

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.

Background

Methods

Results

Conclusions

Publications

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.

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