Barriers to home care for terminally ill Turkish and Moroccan migrants, perceived by GPs and nurses: a survey.
ABSTRACT: BACKGROUND: Previous qualitative research proved that relatives of elderly terminally ill Turkish and Moroccan immigrants experience several barriers to the use of Dutch professional home care. The aim of this study was to explore how general practitioners and home care nurses perceive the home care for terminally ill Turkish and Moroccan migrants and their families in the Netherlands. METHODS: Questionnaires were sent to home care organizations and GPs working in areas where most of these migrants are living. 93 nurses and 78 GPs provided information about their experiences and opinions regarding home care for this group of patients. The data were analyzed by descriptive statistics. RESULTS: GPs refer relatively few patients from these migrant groups to home care. They often find it difficult to assess the needs of these patients and their families. In 40% of the GPs' cases in which terminally ill Turkish and Moroccan migrants were not referred to home care, the GP regretted this afterwards: the patients had not received sufficient qualified care, and their informal carers had often become overburdened.In addition, home care nurses often express dissatisfaction with the home care given to terminally ill Turkish or Moroccan patients, because of communication problems, the patients' lack of knowledge of the disease, or difficulties in making suitable appointments with the patient or with the family. CONCLUSION: Nurses and GPs cite chiefly similar factors influencing access to and use of home care as family members did in a previous study. However, according to GPs and nurses, the main barrier to the use of home care concerns communication problems, while relatives cited the preference for family care as the main reason for abstaining from the use of home care.
Project description:BACKGROUND:Identifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. AIM:To determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. DESIGN AND SETTING:Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. METHOD:Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. RESULTS:The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training. CONCLUSIONS:GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in particular for younger, less experienced GPs.
Project description:In the Netherlands, the increase in of out-of-hours care that is provided by GP co-operatives is challenging the continuity of care for the terminally ill in general practice. Aim of this study is to investigate the views of general practitioners (GPs) on the transfer of information about terminally ill patients to the GP co-operatives. GPs were asked to give their view from two different perspectives: as a GP in their daily practice and as a locum in the GP co-operative.Retrospective web based questionnaire sent to all 424 GPs in the Amsterdam region.With a response rate of 42%, 177 physicians completed the questionnaire. Transfer of information to the GP co-operative about most of their terminally ill patients was reported by 82% of the GPs and 5% did not do so for any of their patients. A faster than foreseen deterioration of the patient's situation was the most frequently reported reason for not transferring information. Of those who transferred information to the GP co-operative, more than 95% reported that they provided information about the diagnosis and terminally ill status of the patient. Information about medication, patient wishes regarding treatment, and prognosis was reported by respectively 90%, 87%, and 74% of the GPs. Less than 50% of the GPs reported that they transferred information about the patient's awareness of both the diagnosis and the prognosis, about the psychosocial context, and intolerances. In their role as locum, over 90% of the GPs wanted to receive information about the diagnosis, the terminally ill status of the patient, the medication and the patient's wishes regarding treatment.Although most GPs reported that they transferred information about their terminally ill patients to the GP co-operative, the content of this information varies considerably. Only 21% of the GPs, working out of hours as a locum, were satisfied with the quality of the information transferred.
Project description:To provide an appropriate method to systematically analyze the hospital discharge of terminally ill patients especially the cooperation between hospital and community nurses and the quality of the discharge handovers. To evaluate the hospital discharge process of terminally ill patients in an academic hospital in the Netherlands using the proposed method.Data were collected from a prospective cohort of all terminally ill patients discharged from the University Medical Center Groningen, the Netherlands, between June and November 2014. The hospital discharges were assessed using 2 questionnaires: an inventory questionnaire, to determine the required care, and an evaluation questionnaire, to evaluate the care actually organized and the discharge handovers. The inventory questionnaire was completed prior to discharge and the evaluation questionnaire between 3 to 7 days after discharge.Around 130 consecutive patients were included. The discharge took place on the desired date in 86% of cases and the average overall discharge grade on a 10-point scale was 7.4 (range: 3-9.5). In 23% of cases discrepancies between required and provided care were identified and medication queries existed in 29%.This study provides a methodology to analyze the hospital discharge procedure of terminally ill patients that can be utlized in any hospital. Structured analysis of the discharge process is valuable and identifies where improvements can be made. Within the study cohort the home care could be arranged at short notice and was considered sufficient. However, in a significant proportion of patients a discrepancy between required and arranged care and queries about medication were identified.
Project description:Migrant mortality does not conform to a single pattern of convergence towards prevalence rates in the host population. To understand better how migrant mortality develops, it is necessary to further investigate how the underlying behavioural determinants change following migration. We studied whether the prevalence of behavioural risk factors over two generations of Turkish and Moroccan migrants converge towards the prevalence rates in the Dutch population. From a random sample from the population register of Amsterdam, 291 Moroccan and 505 Turkish migrants, aged 15-30, participated in a structured interview that included questions on smoking, alcohol consumption, physical inactivity and weight/height. Data from the Dutch population were available from Statistics Netherlands. By calculating age-adjusted Odds Ratio's, prevalence rates among both generations were compared with prevalence rates in the host population for men and women separately. We found indications of convergence across generations towards the prevalence rates in the host population for smoking in Turkish men, for overweight in Turkish and Moroccan women and for physical inactivity in Turkish women. Alcohol consumption, however, remained low in all subgroups and did not converge towards the higher rates in the host population. In addition, we found a reversed trend among Turkish women regarding smoking: the second generation smoked significantly more, while the first generation did not differ from ethnic Dutch. In general, behavioural risk factors in two generations of non-Western migrants in the Netherlands seem to converge towards the prevalence rates in the Dutch population. However, some subgroups and risk factors showed a different pattern.
Project description:BACKGROUND: High total cholesterol and low HDL (high-density lipoprotein) cholesterol are important determinants of cardiovascular disease. Little is known about dyslipidemia among Turkish and Moroccan migrants, two of the largest ethnic minority groups in several European countries. This study examines ethnic differences in total and HDL cholesterol levels between Dutch, Turkish and Moroccan ethnic groups. METHODS: Data were collected in the setting of a general health survey, in Amsterdam, the Netherlands, in 2004. Total response rate was 45% (Dutch: 46%, Turks: 50%, Moroccans: 39%). From 1,220 adults information on history of hypercholesterolemia, lifestyle and demographic background was obtained via health interviews. In a physical examination measurements of anthropometry and blood pressure were performed and blood was collected. Total and HDL cholesterol were determined in serum. RESULTS: Total cholesterol levels were lower and hypercholesterolemia was less prevalent among the Moroccan and Turkish than the Dutch ethnic population. HDL cholesterol was also relatively low among these migrant groups. The resulting total/HDL cholesterol ratio was particularly unfavourable among the Turkish ethnic group. Controlling for Body Mass Index and alcohol abstinence substantially attenuated ethnic differences in HDL cholesterol levels and total/HDL cholesterol ratio. CONCLUSIONS: Total cholesterol levels are relatively low in Turkish and Moroccan migrants. However part of this advantage is off-set by their relatively low levels of HDL cholesterol, resulting in an unfavourable total/HDL cholesterol ratio, particularly in the Turkish population. Important factors in explaining ethnic differences are the relatively high Body Mass Index and level of alcohol abstinence in these migrant groups.
Project description:UNLABELLED: BACKGROUND: Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care. METHODS: A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality. RESULTS: Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems. CONCLUSIONS: This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient's recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients' socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.
Project description:Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.
Project description:OBJECTIVES:To study trends in height of Turkish and Moroccan immigrant children living in The Netherlands, to investigate the association between height and background characteristics in these children, and to calculate height-for-age-references data for these groups. DESIGN:Nationwide cross-sectional data collection from children aged 0 to 18 years by trained professionals in 1997 and 2009. The study population consisted of 2,822 Turkish 2,779 Moroccan, and 13,705 Dutch origin children in 1997 and 2,548 Turkish, 2,594 Moroccan, and 11,255 Dutch origin children in 2009. MAIN OUTCOME MEASURES:Mean height in cm, and mean height standard deviation scores. RESULTS:In 2009, mean height at the age of 18 y was similar for Turkish and Moroccan children: 177 cm for boys and 163 cm for girls, which was 2 to 3 cm taller than in 1997. Still, Turkish and Moroccan adolescents were 5.5 cm (boys) to 7 cm (girls) shorter than their Dutch peers. No significant differences were found in mean height standard deviation scores across the educational level of the parents, geographical region, primary language spoken at home, and immigrant generation. CONCLUSIONS:While the secular height increase in Dutch children came to a halt, the trend in Turkish and Moroccan children living in The Netherlands continued. However, large differences in height between Turkish and Moroccan children and Dutch children remain. We found no association with the background characteristics. We recommend the use of the new growth charts for children of Turkish and Moroccan origin who have a height-for-age below -2SD on the growth chart for Dutch children.
Project description:Although many patients prefer to stay and die at home at the end of life, many are hospitalised. Little is known about how to avoid hospitalisations for patients living at home.To describe how hospitalisation at the end of life can be avoided, from the perspective of the GPs, nurses and family carers.A qualitative design with face-to-face interviews was used. Taking 30 cases of patients who died non-suddenly, 26 GPs, 15 nurses and 18 family carers were interviewed in depth. Of the 30 patients, 20 were hospitalised and 10 were not hospitalised in the last three months of life.Five key themes that could help avoid hospitalisation at the end of life emerged from the interviews. The key themes were: 1) marking the approach of death, and shifting the mindset; 2) being able to provide acute treatment and care at home; 3) anticipatory discussions and interventions to deal with expected severe problems; 4) guiding and monitoring the patient and family in a holistic way through the illness trajectory; 5) continuity of treatment and care at home. If these five key themes are adopted in an interrelated way, this could help avoid hospitalisations, according to GPs, nurses and family carers.The five key themes described in this study can be seen as strategies that could help in avoiding hospitalisation at the end of life. It is recommended that for all patients residing at home, GPs and community nurses work together as a team from the moment that it is marked that death is approaching up to the end of life.
Project description:To explain the current delivery of healthcare to residents living in UK care homes.Qualitative interview study using a grounded theory approach.6 UK care homes and primary care professionals serving the homes.Of the 32 participants, there were 7 care home managers, 2 care home nurses, 9 care home assistants, 6 general practitioners (GPs), 3 dementia outreach nurses, 2 district nurses, 2 advanced nurse practitioners and 1 occupational therapist.5 themes were identified: complex health needs and the intrinsic nature of residents' illness trajectories; a mismatch between healthcare requirements and GP time; reactive or anticipatory healthcare?; a dissonance in healthcare knowledge and ethos; and tensions in the responsibility for the healthcare of residents. Care home managers and staff were pivotal to healthcare delivery for residents despite their perceived role in social care provision. Formal healthcare for residents was primarily provided via one or more GPs, often organised to provide a reactive service that did not meet residents' complex needs. Deficiencies were identified in training required to meet residents' needs for both care home staff as well as GPs. Misunderstandings, ambiguities and boundaries around roles and responsibilities of health and social care staff limited the development of constructive relationships.Healthcare of care home residents is difficult because their needs are complex and unpredictable. Neither GPs nor care home staff have enough time to meet these needs and many lack the prerequisite skills and training. Anticipatory care is generally held to be preferable to reactive care. Attempts to structure care to make it more anticipatory are dependent on effective relationships between GPs and care home staff and their ability to establish common goals. Roles and responsibilities for many aspects of healthcare are not made explicit and this risks poor outcomes for residents.