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Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience.

ABSTRACT: 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.

SUBMITTER: Ebenau A

PROVIDER: S-EPMC6961318 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience.

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

BMC palliative care 20200114 1

<h4>Background</h4>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, Pro ...[more]

PMID: 31937289

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Project description:BackgroundSystematic 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.MethodsData-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.ResultsNine 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.ConclusionsThis 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.

Project description:AimTo explore social and healthcare professionals' experiences of end-of-life (EOL) care planning and documentation in palliative care.DesignA qualitative study with narrative methodology.MethodsA narrative method with interviews was used. Data were collected from purposively selected registered nurses (n = 18), practical nurses (n = 5), social workers (n = 5) and physicians (n = 5) working in palliative care unit in five hospitals in three hospital districts. Content analysis within narrative methodologies was undertaken.ResultsTwo main categories - patient-oriented EOL care planning and multi-professional EOL care planning documentation- were formed. Patient-oriented EOL care planning included treatment goals planning, disease treatment planning and EOL care setting planning. Multi-professional EOL care planning documentation included healthcare professionals' and social professionals' perspectives. Healthcare professionals' perspectives on EOL care planning documentation included benefits of structured documentation and poor support of electronic health record (EHR) for documentation. Social professionals' perspective on EOL care planning documentation included usefulness of multi-professional documentation and externality of social professionals in multi-professional documentation.ConclusionThe results of this interdisciplinary study demonstrated a gap between what healthcare professionals consider important in Advance Care Planning (ACP), that is, proactive, patient-oriented and multi-professional EOL care planning and the ability to access and document this in a useful and accessible way in the EHR.Relevance to clinical practiceKnowledge of the patient-centered EOL care planning and multi-professional documentation processes and their challenges are prerequisites for documentation to be supported by technology.Reporting methodThe Consolidated Criteria for Reporting Qualitative Research checklist was followed.Patient or public contributionNo patient or public contribution.

Project description:BackgroundAdvance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.AimTo study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation.MethodsThe study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.FindingsOrganisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.ConclusionsSuccessful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

Project description:BackgroundDementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities.MethodsThis was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke.ResultsThe major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care.ConclusionsThe findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.

Project description:ObjectivesThis qualitative systematic review aimed to explore and synthesise healthcare professionals' (HCPs) experiences of job satisfaction when providing person-centred care (PCC) in healthcare settings in Europe.MethodThis systematic review of qualitative studies was followed by a thematic synthesis applying an inductive approach. Studies concerning HCPs and different levels of healthcare in Europe were eligible for inclusion. The CINAHL, PubMed and Scopus databases were searched. Study titles, abstracts and full texts were screened for relevance. Included studies were assessed for methodological quality using a quality appraisal checklist. Data were extracted and synthesised via thematic synthesis, generating analytical themes.ResultsSeventeen studies were included in the final thematic synthesis, and eight analytical themes were derived. Most studies were conducted in Sweden and the UK and were performed in hospitals, nursing homes, elderly care and primary care. Thirteen of these studies were qualitative and four used a mixed-method design in which the qualitative part was used for analysis. HCPs experienced challenges adapting to a new remoulded professional role and felt torn and inadequate due to ambiguities between organisational structures, task-oriented care and PCC. Improved job satisfaction was experienced when providing PCC in line with ethical expectations, patients and colleagues expressed appreciation and team collaboration improved, while learning new skills generated motivation.ConclusionThis systematic review found varied experiences among HCPs. Notably, the new professional role was experienced to entail disorientation and uncertainty; importantly, it also entailed experiences of job satisfaction such as meaningfulness, an improved relationship between HCPs and patients, appreciation and collaboration. To facilitate PCC implementation, healthcare organisations should focus on supporting HCPs through collaborational structures, and resources such as time, space and staffing.Prospero registration numberCRD42022304732.

Project description:Crohn's Disease (CD) in Spain lacks of a unified National Clinical Pathway and not even any early detection program and professional follow-up outpatient attention once it has been diagnosed. Little is known about the Spanish health professionals' views of the experiences of individuals living with Crohn's Disease nationwide and also about how the Spanish Health System faces this situation. A qualitative research method was conducted to explore this topic through in-depth interviews with eleven healthcare professionals, who represented different clinics treating people with CD from the province of Alicante (Spain). Three topics and seven sub-topics were derived from the analysis of the content emerging from the interviews. The three main topics were: the healthcare system as a hindrance for ongoing treatment of CD, the impact of the disease, support networks. The knowledge of CD gained by healthcare professionals, in the contexts studied here within, with regards to the psychosocial aspects and the experience of those living with the disease and their immediate circles, is poor, if not null on an academic level, becoming experiential on their incorporation into the professional field. Additionally, a priori, they lack the tools to address the doubts and concerns of patients from the moment of diagnosis through the ongoing care of the patient. Organizational hindrances, such as the lack of time and consensual guidelines for adequately monitoring CD patients in Alicante (Spain), further restrict the patient-professional relationship. Due to the consensus established by the National Agency regulating the contents of the Health Professions' Education and Training across the country, we are assuming that the phenomenon highlighted may be similar in other parts of Spain. Therefore, it can be said that healthcare professionals have a limited understanding of the impact of CD on the day-to-day life of those affected, not being considered a part of the CD patients' formal support network. Nonetheless, they are conscious of this limitation and advocate for multidisciplinary teams as the best means of attending to people living with CD. Our study outcomes may represent the first step onto identifying strategies and best practices for establishing an effective therapeutic relationship, as well as any hindering factors.

Dataset Information

Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience.

Publications

Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience.

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