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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: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: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.

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:ObjectivesTo identify priority medicines policy issues, including the 'use' and 'access to medicines' in Qatar.DesignIn this qualitative study, general inductive method was used and semi-structured exploratory interviews conducted.SettingStakeholders from a broad range of academic and healthcare practitioners in Qatar.ParticipantsExploratory, semi-structured interviews were conducted with 21 stakeholders throughout Qatar. The inclusion criteria include (a) participants working or involved in the Qatar's healthcare system, (b) participants having experience or working knowledge of medicine policy documents, different facets of it, use of medicines and access to medicines, (c) as well as participants well versed in the English language. It was intended to cover stakeholders from a broad range of healthcare and policy institutions in Qatar.Primary and secondary outcome measuresAll participants were involved in semi-structured, audio-recorded interviews, which were then transcribed verbatim, coded into NVivo V.12 and followed by thematic analysis to identify the common themes. Perceptions, experiences and opinions regarding Qatar's medicines policy issues were recorded.ResultsThis study found challenges related to the availability of pharmaceuticals in Qatar, including medicines registration process. There is no comprehensive national medicines policy in Qatar, however, there are a number of rules, regulations, policies and procedures in place. The community pharmacy services provided are mostly 'traditional' with less emphasis on pharmacists' extended roles and/or cognitive services. The study identifies several areas for improvement including extending the role of the pharmacist, improve the prescribing of antibiotics, medicines compliance and counselling for consumers, pharmacovigilance, implementation of generic medicines policies, as well as the need for a national health record database.ConclusionsThe findings suggest that in the last 20 years, Qatar has moved towards advancing healthcare; however, there are gaps and opportunities. The strategies need to be developed to resolve access to medicines issues, the priority being medicines registration, import and so on. With the rise of chronic diseases and a growing population, there is also a need to work to improve medicines adherence among patients.A national medicines policy should be developed through a consultative broad-based process in which prescribers, physicians, pharmacists and healthcare professionals be given a chance to contribute.

Project description:BackgroundOlder patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients' and professionals' experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment.MethodsIn this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis.ResultsIn six focus-groups, participants (n = 47) demonstrated four major themes: (1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains. (2) Experiences with geriatric assessment. Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support. (3) Barriers and facilitators for implementation of geriatric assessment in routine care. Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings. (4) Desired characteristics of a suitable geriatric assessment concerned the scope and use of tests and timing of assessment.ConclusionsPatients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD.

Project description:PurposeCancer-related cognitive problems (cancer-related cognitive problems) in working cancer survivors are found to affect work outcomes. We aimed to generate in-depth information regarding cancer-related cognitive problems in working cancer survivors, strategies used to cope with cancer-related cognitive problems at work, and needs of cancer survivors and professionals regarding cancer-related cognitive problems at work.MethodsFive focus groups were formed, amongst which three focus groups with cancer survivors (n = 8, n = 7, and n = 8) and two focus groups with professionals (n = 7, n = 8). Thematic analysis of the transcripts was performed to create concepts.ResultsBoth cancer survivors and professionals confirmed that cancer-related cognitive problems, which occurred in several domains of neurocognitive functioning, affect work functioning. Cancer survivors used several strategies (e.g., applying practical adjustments, re-organization of work, and accepting limitations) to cope with cancer-related cognitive problems at work, as did professionals in their attempt at supporting cancer survivors facing these problems. Various needs of cancer survivors (e.g., supportive care options, acknowledgment by others) and professionals (e.g., improvement of expertise, clarity about referral pathways) regarding cancer-related cognitive problems at work were mentioned.ConclusionsDue to the growing number of working cancer survivors dealing with cancer-related cognitive problems, it is essential to sustain their employability. Therefore, cognitive rehabilitation interventions should be developed, taking functioning at work into account. Knowledge amongst professionals regarding cancer-related cognitive problems, as well as coordination of care for cancer-related cognitive problems, should be improved. Ensuring professional education regarding cancer-related cognitive problems, within both the healthcare and occupational setting, is of utmost importance.Implications for cancer survivorsSupport for working cancer survivors who experience cancer-related cognitive problems might increase their employability in the longer term.

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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