RESUMEN
BACKGROUND: According to current research data, individuals with migration background rarely utilize palliative care services. The potential reasons remain largely unclear, with cultural differences being suggested most frequently. A study focusing on the needs of cancer patients with migration background in Germany provides an overview of the care problems encountered. METHOD: The qualitative study design focuses on biographic narratives by patients, their relatives and medical care providers (nâ=â57). Data were analyzed with "grounded theory" which disclosed various categories and coping strategies in dealing with both the disease and the care provided. RESULT: Arriving in palliative care, severely ill patients with migration background experience social exclusion. These migration-specific effects have a negative impact on coping with the disease and on palliative treatment and end-of-life care. Relatives and medical care providers face a challenge when they fail to meet the patients' expectations. Many problems are attributed to cultural differences although patients nearing the end of their lifes tend to articulate rather generic needs. CONCLUSION: Individuals with migration background frequently receive palliative care without their care givers having any specific knowledge of their migration biography. In order to do justice to societal effects, the support given must go beyond the mere medical expertise.
Asunto(s)
Neoplasias , Cuidados Paliativos , Cuidado Terminal , Emigrantes e Inmigrantes , Alemania , Accesibilidad a los Servicios de Salud , Humanos , Neoplasias/etnología , Neoplasias/terapia , Investigación Cualitativa , Aislamiento SocialRESUMEN
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.
Asunto(s)
Emigrantes e Inmigrantes/estadística & datos numéricos , Testimonio de Experto/métodos , Accesibilidad a los Servicios de Salud/normas , Cuidados Paliativos/normas , Barreras de Comunicación , Femenino , Alemania , Humanos , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/estadística & datos numéricos , Investigación CualitativaRESUMEN
BACKGROUND AND OBJECTIVES: People with a migration background (MB) are an important part of German society. If and how they use specialised palliative care (SPC) has not been studied. We aimed to assess the current SPC for patients with Turkish or Arabic MB (the largest group of immigrants in Germany with a shared ascribed culture) from the point of view of healthcare professionals (HCP) in Lower Saxony. METHOD: All HCPs in institutions providing SPC (n = 90) were invited to participate in an anonymous online survey which contained closed and open questions about care for this patient group, characteristics of the last patient with Turkish or Arabic MB they cared for, and resources and strategies to care for these patients. The survey was analysed using descriptive statistics and qualitative content analysis. RESULTS: Fifty-five HCPs in SPC participated, mostly nurses aged between 40 and 60 years. One fifth had not cared for a patient with Turkish or Arabic MB during the last 12 months. Given their local population, 84.6% estimated that they cared for a lower number of patients than would be representative. In care, problems with communication as well as difficulties to interact with and manage families, and in organising and planning care were most prevalent. Only 21% of participants had access to interpreters. DISCUSSION: Patients with Turkish or Arabic MB seem to be underrepresented in SPC. The high rate of communication problems highlights the necessity of reliable and accessible interpreter services. Most difficulties were of psychosocial nature, showing how important the holistic approach of SPC is in caring for terminally ill patients with Turkish or Arabic MB.
Asunto(s)
Árabes/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/etnología , Disparidades en Atención de Salud/estadística & datos numéricos , Cuidados Paliativos/estadística & datos numéricos , Migrantes/estadística & datos numéricos , Adulto , Anciano , Actitud del Personal de Salud , Barreras de Comunicación , Femenino , Alemania/etnología , Encuestas de Atención de la Salud , Enfermería de Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Psicología , Turquía/etnología , Revisión de Utilización de RecursosRESUMEN
PURPOSE OF REVIEW: Patients' autonomy is seen as a major issue in modern medicine but requires the ability to understand and rate an issue without being influenced by others. However, near the end of life, patients often decide considering the consequences for their relatives. RECENT FINDINGS: Our study results and recent literature suggest that existing relational patterns determine experiences, family dynamics, and decision-making processes at the end of life. Relatives as a resource can promote patients' autonomy. In doubt of the patients' judgment or prioritizing their own needs, relatives can undermine patient's autonomy in a paternalistic way. Trust in others should be seen as a reciprocal process. SUMMARY: With respect to the patient's autonomy, healthcare providers need to consider the family structure and its relations.