Dataset Information

"An odyssey without receiving proper care" - experts' views on palliative care provision for patients with migration background in Germany.

ABSTRACT: BACKGROUND:Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews. METHODS:Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel. RESULTS:In total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don't address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients' preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants. CONCLUSIONS:Though needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.

SUBMITTER: Jansky M

PROVIDER: S-EPMC6341678 | biostudies-other | 2019 Jan

REPOSITORIES: biostudies-other

ACCESS DATA

Publications

"An odyssey without receiving proper care" - experts' views on palliative care provision for patients with migration background in Germany.

Jansky Maximiliane M Owusu-Boakye Sonja S Nauck Friedemann F

BMC palliative care 20190121 1

<h4>Background</h4>Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews.<h4>Methods</h4>Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel.<h4>Results</h4>In ...[more]

PMID: 30665379

Similar Datasets

Project description:BACKGROUND: Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. METHODS: In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. RESULTS: Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. CONCLUSION: General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system.

Project description:IntroductionDespite continuously growing, palliative care in Thailand still needs further development. Many family physicians provide various levels of palliative care. However, there is no information regarding what aspects of palliative care family practitioners provide and how much confidence they have. This study aims to identify gaps between expected care domains and provided care and to reveal the domains in which family physicians are less confident.MethodThis study is a cross-sectional survey study. An online questionnaire was publicly published to recruit target participants, Thai family physicians who have received formal residency training and actively practice medicine. The estimated number of actively practising family physicians was 540 persons. Participants were asked which palliative care domains they provide and to rate their confidence in each. A narrative analysis was performed using two relevant frameworks.ResultOne hundred and seven responses were received. Forty-six per cent of participants have no further training in palliative care other than during their residency programs. At least 63.6 per cent of participants provide palliative care two half-day per week or less. Grief and spiritual care enjoyed the least percentage of the participant's responses regarding provided care. These two domains also received the lowest percentage of confidence in providing care from the participants.DiscussionThough they are considered essential domains, there are gaps between expected care and actual care in grief management and spiritual care. Grief and bereavement care are mentioned in the residency curriculum; nonetheless, there is an inconsistency regarding spiritual care. Increasing access to continuous education and integrating it into curriculums should be considered to reduce the gaps. Additionally, a national guideline regarding levels of palliative care and the roles of family physicians will benefit from establishing comprehensive palliative care programmes.

Project description:BACKGROUND: Following recent modifications of the Medical Licensure Act (ÄApprO) in the year 2009, palliative care was introduced as a compulsory 13(th) cross-disciplinary subject (Q13) in the undergraduate curriculum. Its implementation must have taken place before the beginning of the final year ('practical year') in August 2013 and has to be substantiated for the medical exams taking place in October 2014. Very diverse structures pertaining to palliative care teaching were described in previous surveys at various medical faculties in Germany. As a result, the current and future plans and concepts related to content and exams of a mandatory Q13 course at the respective faculty sites should be ascertained. METHODS: Since 2006, the German Medical Students' Association (bvmd) has been carrying out a bi-annual survey at all medical faculties in Germany regarding the current situation of teaching in the field of palliative care. After designing and piloting an online survey in May 2010, a one-month online survey took place. The data was assessed using a descriptive approach. RESULTS: 31 of 36 medical faculties took part in the survey. At the time of questioning, 15 faculties already taught courses according to the requirements of the new ÄApprO; at three sites the Q13 is yet to be introduced commencing in 2012. A teaching curriculum for Q13 already existed at 15 faculty sites, partly based on the curricular requirements of the German Association for Palliative Medicine (DGP). Six sites described an implementation process as yet without an independent curriculum. Most of the faculties aim for 21-40 course hours, which will for the most part be provided as lectures, seminars or less often in more assisted and intense formats. The majority of the participating faculties intend an examination containing multiple choice questions. At 8 universities there is an independent Chair for palliative medicine (5 more are planned); this was linked with a higher degree of mandatory teaching in alignment with the requirements of the ÄApprO. A broad spectrum of educationally-involved occupational groups, specialist disciplines and external co-operating partners, were mentioned. CONCLUSION: The infrastructural prerequisites of the present curricular concepts and the degree of implementation of the Q13 according to the requirements of the new ÄApprO diverge significantly among the various medical faculties. The efforts made to produce a qualitatively high standard of teaching with regard to the multifaceted questions concerning the support for severely and terminally ill patients is as much reflected in the survey, as the special implications of an independent Chair for palliative medicine for the implementation of the requirements by law. The participation of various occupational groups in this survey as well as the broad spectrum of those involved highlights the interdisciplinary and multi-professional dimension of teaching in palliative care.

Project description:Background and objectivesThe use of palliative care in AKI is not well described. We sought to better understand palliative care practice patterns for hospitalized patients with AKI requiring dialysis in the United States.Design, setting, participants, & measurementsUsing the 2012 National Inpatient Sample, we identified patients with AKI and palliative care encounters using validated International Classification of Diseases, Ninth Revision, Clinical Modification codes. We compared palliative care encounters in patients with AKI requiring dialysis, patients with AKI not requiring dialysis, and patients without AKI. We described the provision of palliative care in patients with AKI requiring dialysis and compared the frequency of palliative care encounters for patients with AKI requiring dialysis with that for patients with other illnesses with similarly poor prognoses. We used logistic regression to determine factors associated with the provision of palliative care, adjusting for demographics, hospital-level variables, and patient comorbidities.ResultsWe identified 3,031,036 patients with AKI, of whom 91,850 (3%) received dialysis. We observed significant patient- and hospital-level differences in the provision of palliative care for patients with AKI requiring dialysis; adjusted odds were 26% (95% confidence interval, 12% to 38%) lower in blacks and 23% (95% confidence interval, 3% to 39%) lower in Hispanics relative to whites. Lower provision of palliative care was observed for rural and urban nonteaching hospitals relative to urban teaching hospitals, small and medium hospitals relative to large hospitals, and hospitals in the Northeast compared with the South. After adjusting for age and sex, there was low utilization of palliative care services for patients with AKI requiring dialysis (8%)-comparable with rates of utilization by patients with other illnesses with poor prognosis, including cardiogenic shock (9%), intracranial hemorrhage (10%), and acute respiratory distress syndrome (10%).ConclusionsThe provision of palliative care varied widely by patient and facility characteristics. Palliative care was infrequently used in hospitalized patients with AKI requiring dialysis, despite its poor prognosis and the regular application of life-sustaining therapy.

Project description:BACKGROUND: Statements on potential measures to improve palliative care in Germany predominantly reflect the points of view of experts from specialized palliative care organizations. By contrast, relatively little is known about the views of representatives of organizations and institutions that do not explicitly specialize in palliative care, but are involved to a relevant extent in the decision-making and policy-making processes. Therefore, for the first time in Germany, we carried out a representative study of the attitudes of a broad range of different stakeholders acting at the national or state level of the health care system. METHODS: 442 organizations and institutions were included and grouped as follows: patient organizations, nursing organizations, medical associations, specialized palliative care organizations, political institutions, health insurance funds and others. Using a standardized questionnaire, the participants were asked to rate their agreement with the World Health Organization's definition of palliative care (five-point scale: 1 = completely agree, 5 = completely disagree) and to evaluate 18 pre-selected improvement measures with regard to their general meaningfulness and the feasibility of their introduction into the German health care system (two-point scale: 1 = good, 2 = poor). RESULTS: The response rate was 67%. Overall, the acceptance of the aims of palliative care in the WHO definition was strong. However, the level of agreement among health insurance funds' representatives was significantly less than that among representatives of the palliative care organizations. All the improvement measures selected for evaluation were rated significantly higher in respect of their meaningfulness than of their feasibility in Germany. In detail, the meaningfulness of 16 measures was evaluated positively (70-100% participants chose the answer "good"); for six of these measures feasibility was evaluated negatively (0-30% "good"), while for the remaining ten measures feasibility was evaluated inconsistently (31-69% "good"). CONCLUSION: The reason why potentially meaningful improvement measures are considered to be not very feasible in Germany may be the existence of barriers resulting from the high degree of fragmentation of health care provision and responsibilities. In overcoming these barriers and further improving palliative care it may be helpful that the basic understanding of the palliative care approach seems to be quite homogenous among the different groups.

Project description:BackgroundThe care of palliative patients takes place as non-specialized and specialized care, in outpatient and inpatient settings. However, palliative care is largely provided as General Outpatient Palliative Care (GOPC). This study aimed to investigate whether the survival curves of GOPC patients differed from those of the more intensive palliative care modalities and whether GOPC palliative care was appropriate in terms of timing.MethodsThe study is based on claims data from a large statutory health insurance. The analysis included 4177 patients who received palliative care starting in 2015 and who were fully insured 1 year before and 1 year after palliative care or until death. The probability of survival was observed for 12 months. Patients were classified into group A, which consisted of patients who received palliative care only with GOPC, and group B including patients who received inpatient or specialized outpatient palliative care. Group A was further divided into two subgroups. Patients who received GOPC on only 1 day were assigned to subgroup A1, and patients who received GOPC on two or more days were assigned to subgroup A2. The survival analysis was carried out using Kaplan-Meier curves. The median survival times were compared with the log-rank test.ResultsThe survival curves differed between groups A and B, except in the first quartile of the survival distribution. The median survival was significantly longer in group A (137 days, n = 2763) than in group B (47 days, n = 1424, p < 0.0001) and shorter in group A1 (35 days, n = 986) than in group A2 (217 days, n = 1767, p < 0.0001). The survival rate during the 12-month follow-up was higher in group A (42%) than in group B (11%) and lower in group A1 (38%) than in group A2 (44%).ConclusionsThe results of the analysis revealed that patients who received the first palliative care shortly before death suspected insufficient care, especially patients who received GOPC for only 1 day and no further palliative care until death or 12-month follow-up. Palliative care should start as early as necessary and be continuous until the end of life.

Project description:Background: Little is known about the content of communication in palliative care telehealth conversations in the dialysis population. Understanding the content and process of these conversations may lead to insights about how palliative care improves quality of life. Methods: We conducted a qualitative analysis of video recordings obtained during a pilot palliative teleconsultation program. We recruited patients receiving dialysis from five facilities affiliated with an academic medical center. Palliative care clinicians conducted teleconsultation using a wall-mounted screen with a camera mounted on a pole and positioned mid-screen in the line of sight to facilitate direct eye contact. Patients used an iPad that was attached to an IV pole positioned next to the dialysis chair. Conversations were coded using a preexisting framework of themes and content from the Serious Illness Conversation Guide (SICG) and revised Edmonton Symptom Assessment System-Renal. Results: We recruited 39 patients to undergo a telepalliative care consultation while receiving dialysis, 34 of whom completed the teleconsultation. Specialty palliative care clinicians (3 physicians and 1 nurse practitioner) conducted 35 visits with 34 patients. Median (interquartile range) duration of conversation was 42 (28-57) minutes. Most frequently discussed content included sources of strength (91%), critical abilities (88%), illness understanding (85%), fears and worries (85%), what family knows (85%), fatigue (77%), and pain (65%). Process features such as summarizing statements (85%) and making a recommendation (82%) were common, whereas connectional silence (56%), and emotion expression (21%) occurred less often. Conclusions: Unscripted palliative care conversations in outpatient dialysis units through telemedicine exhibited many domains recommended by the SICG, with less frequent discussion of symptoms. Emotion expression was uncommon for these conversations that occurred in an open setting.

Dataset Information

"An odyssey without receiving proper care" - experts' views on palliative care provision for patients with migration background in Germany.

Publications

"An odyssey without receiving proper care" - experts' views on palliative care provision for patients with migration background in Germany.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets