Dignity-conserving palliative care in a diverse population: A qualitative study of physicians' perspective.

BACKGROUND: Preserving personal dignity is an important aim of palliative care. Little is known about how physicians perceive and preserve dignity of patients from non-western migration backgrounds. Insight in this is important given the increased demand for culturally sensitive palliative care. AIM: To gain insight in how Dutch physicians perceive and preserve dignity in the last phase of life for patients from non-western migration backgrounds. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: Fifteen physicians experienced in palliative care. RESULTS: Physicians experienced dilemmas in preserving dignity of non-western patients in three situations: (a) relief of suffering in the terminal phase, (b) termination of interventions and treatment, and (c) disclosure of diagnosis. Physicians wanted to grant the needs of patients in the last phase of their lives, which was central to physicians' view on dignity, but dilemmas arose when this conflicted with physicians' other personal and professional values. To make the dilemmas manageable, physicians assessed whether needs of patients were authentic, but due to linguistic, cultural, and communication barriers, this was difficult with non-western patients. To find a way out of the dilemmas, physicians had three strategies: accept and go along with patient's wishes, convince or overrule the patient or family, or seek solutions that were acceptable for all. CONCLUSIONS: Physicians encounter dilemmas providing palliative care for people from non-western backgrounds. Future physicians can be trained in connective strategies and seeking middle grounds to optimally preserve patients' dignity while being in concordance with their personal and professional values.

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study.

BACKGROUND: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. METHODS: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. RESULTS: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. CONCLUSION: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

BACKGROUND: The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. METHODS: We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. RESULTS: Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. CONCLUSION: Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

A dignified last phase of life for patients with a migration background: A qualitative study.

BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

Psychological distress in ethnic minority parents of preschool children with burns.

BACKGROUND: Literature indicates that children from ethnic minorities are at increased risk of sustaining burns. Moreover, parents may experience more psychological distress but why this is the case is poorly investigated. METHODS: A prospective study including 120 mothers and 106 fathers of preschool children, of which 23 mothers and 24 fathers had an ethnic minority background, investigated levels of parental feelings of guilt, depressive and posttraumatic stress symptoms and compared Dutch parents with parents from different ethnic backgrounds on these outcomes. A qualitative study with 46 parents, 24 Dutch and 22 from different ethnic minority backgrounds, explored how they coped with the consequences of the burns. RESULTS: Results revealed more symptoms of posttraumatic stress and depression in ethnic minority parents. Ethnic minority fathers also had more guilt feelings. Lower social support, medical communication hampered by language barriers, lower health literacy and passive communication styles, (aspects of) religious coping and barriers to psychosocial care may partly explain the differences. CONCLUSIONS: Parents with an ethnic minority background are at risk to experience increased distress after their child's burn injury. By exploring the aforementioned factors, health care professionals may increase the family's wellbeing. It may provide a starting point to offer tailored help.

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.

BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Towards culturally competent paediatric oncology care. A qualitative study from the perspective of care providers.

In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different paediatric oncology wards and were analysed using a framework method. We found that care providers described the contact with Turkish and Moroccan parents as more difficult. They offered two reasons for this: (1) language barriers between care provider and parents hindered the exchange of information; (2) cultural barriers between care provider and parents about sharing the diagnosis and palliative perspective hindered communication. Care providers reported different solutions to deal with these barriers, such as using an interpreter and improving their cultural knowledge about their patients. They, however, were not using interpreters sufficiently and were unaware of the importance of eliciting parents' perspectives. Communication techniques to overcome dilemmas between parents and care providers were not used and care providers were unaware of stereotypes and prejudice. Care providers should be offered insight in cultural barriers they are unaware of. Training in cultural competence might be a possibility to overcome manifest barriers.

Differential TLR-induced cytokine production by human mast cells is amplified by FcɛRI triggering.

BACKGROUND: Mast cells are mainly present in strategic locations, where they may have a role in defence against parasites and bacteria. These pathogens can be recognized by mast cells via Toll-like receptors (TLR). Allergic symptoms are often increased in the presence of pathogens at the site of allergen exposure, but it is unknown which cytokines can mediate such an effect. OBJECTIVE: To study whether an interaction between IgE- and TLR-mediated activation of human mast cells can contribute to exacerbated inflammatory responses. METHODS: Peripheral blood-derived mast cells were stimulated with TLR ligands, in the presence or absence of anti-IgE triggering, after which degranulation was measured using flow cytometry and cytokine production was evaluated by multiplex assays, and ELISA. For evaluation of allergen-specific responses, mast cells were sensitized with serum of allergic individuals or controls, after which they were stimulated using allergens in combination with TLR ligands. RESULTS: Simultaneous triggering of mast cells via IgE and TLR ligands greatly enhanced cytokine production but not IgE-induced degranulation. Different TLR ligands specifically enhanced the differential production of cytokines in conjunction with FcεRI triggering. Importantly, only TLR-4 and TLR-6 were able to induce robust production of IL-13, an important molecule in allergic reactions. CONCLUSIONS & CLINICAL RELEVANCE: These results indicate that the simultaneous presence of pathogen- or danger-associated signals and FcεRI triggering via specific IgE can significantly modify mast cell-mediated allergic reactions via synergistic production of cytokines and inflammatory mediators and provide an explanation of augmented allergic symptoms during infection.

Toll-like receptor triggering augments activation of human mast cells by anti-citrullinated protein antibodies.

OBJECTIVE: Mast cells may play a role in rheumatoid arthritis (RA), but activation of human mast cells in autoimmune settings has been little studied. Toll-like receptors (TLR) and Fcγ receptors (FcγR) are important receptors for cellular activation in the joint, but expression and stimulation of these receptors in human mast cells or the functional interplay between these pathways is poorly understood. Here, we analysed triggering of human mast cells via these receptors in the context of anti-citrullinated protein antibody-positive (ACPA+) RA. METHODS: RNA and protein expression of TLRs and FcγR was quantified using PCR and flow cytometry, respectively. Mast cells were stimulated with TLR ligands (including HSP70) combined with IgG immune complexes and IgG-ACPA. RESULTS: Human mast cells expressed TLRs and produced cytokines in response to TLR ligands. Both cultured and synovial mast cells expressed FcγRIIA, and triggering of this receptor by IgG immune complexes synergised with activation by TLR ligands, leading to two- to fivefold increased cytokine levels. Mast cells produced cytokines in response to ACPA immune complexes in a citrulline-specific manner, which synergised in the presence of HSP70. CONCLUSIONS: Our data show that synovial mast cells express FcγRIIA and that mast cells can be activated by IgG-ACPA and TLR ligands. Importantly, combined stimulation via TLRs and immune complexes leads to synergy in cytokine production. These findings suggest mast cells are important targets for TLR ligands and immune complexes, and that combined activation of mast cells via these pathways greatly enhances inflammation in synovial tissue of RA patients.

The first contacts between healthcare providers and newly-arrived asylum seekers: a qualitative study about which issues need to be addressed.

OBJECTIVES: Asylum seekers have been recognized as having unique and complex health needs which require attention upon arrival in the host country. Not much is known about what issues to address in first contacts with asylum seekers. The purpose of this study is to give insight in the specific issues that healthcare providers need to address in the first contacts with newly arrived asylum seekers. STUDY DESIGN: A qualitative study using different types of data in 2007 and 2008. METHODS: Questionnaires (n = 89) were used as input for seven group interviews with Dutch care providers (n = 46) working with asylum seekers in the Netherlands, were qualitatively analysed, using a framework method. RESULTS: Healthcare providers identified four issues they aimed to address in first contacts with asylum seekers: (1) assessing the current health condition; (2) health risk assessment; (3) providing information about the healthcare system of the host country; and (4) health education. CONCLUSION: The first contacts between healthcare providers and asylum seekers serve different goals, especially assessing health problems and risks, and providing health information. These issues may, however, be addressed differently by different healthcare providers, across different host countries, dependent on the way healthcare and medical insurance for asylum seekers are organized.

Issues to address in burn care for ethnic minority children: a qualitative study of the experiences of health care staff.

INTRODUCTION: Numerous studies have shown that ethnic minority children in the developed world are at greater risk of sustaining burns compared to children from non-ethnic minority backgrounds. However, little is known about the experiences of hospital health care staff with ethnic minority children and parents. A qualitative interview study was conducted to gain more insight into burn care for ethnic minority children and the potential challenges this presents. METHODS: Semi-structured interviews on burn care for ethnic minority children were conducted in 2009 with health care staff (N=17) working in two burn centers in the Netherlands. Interviews were transcribed and analyzed using a framework method. RESULTS: Health care staff identified the following issues in burn care for ethnic minority children and their parents: (1) linguistic barriers to communication with parents about pressure garments, dressing changes, skin grafting procedures, and psychosocial support; (2) biological/genetic features of differing pigmentation of skin and skin healing; (3) cultural differences between parents and health care staff; (4) insecurity or irritation about linguistic and cultural barriers. CONCLUSIONS: Burn health care staff should have knowledge of biological/genetic features of dark skin, awareness of cultural differences, and transcultural communication skills to deliver culturally competent care tailored to the needs of ethnic minority children and their parents.

Anti-citrullinated protein antibodies in rheumatoid arthritis: a functional role for mast cells and basophils?

Rheumatoid arthritis (RA) is an autoimmune disease characterised by chronic inflammation of the joints. Anti-citrullinated protein antibodies (ACPA) are highly specific for RA and are associated with a more severe disease progression. ACPA have also been shown to have a pathological role in RA. In animal models of RA, ACPA enhances arthritis. Furthermore, in vitro generated immune complexes with ACPA can activate macrophages and the complement system in the human system. Recently, a direct functional and specific response of FcεRI+ immune cells towards citrullinated proteins was demonstrated. Basophils of ACPA+ RA patients are activated by citrullinated proteins that cross link the FcεRI receptor via IgE-ACPA, physiologically bound to the receptor. In addition, synovial mast cells from ACPA+ RA patients show a more activated phenotype than mast cells from ACPA- patients. These findings underline the suggestion that ACPA+ and ACPA- RA are two different disease entities and point to a possible functional role of ACPA and FcεRI+ cells in the pathogenesis of RA.