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

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract 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.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

A qualitative study using semi-structured interviews of palliative care patients’ views on corneal donation and the timing of its discussion

2018 ◽  
Vol 32 (8) ◽  
pp. 1428-1437
Author(s):  
Lucy Walker ◽  
Karen Neoh ◽  
Hazel Gilkes ◽  
Clare Rayment
Keyword(s):  
Palliative Care ◽  
Sampling Method ◽  
Healthcare Professionals ◽  
Corneal Transplantation ◽  
Structured Interviews ◽  
Illness Trajectory ◽  
Face To Face ◽  
Donor Shortage ◽  
Corneal Donation ◽  
Sight Restoration

Background: Corneal transplantation can lead to sight restoration, but globally there is a donor shortage. Many palliative care patients can donate their corneas but think they are ineligible due to comorbidities. Healthcare professionals are reluctant to broach the topic, but studies have shown that relatives would be upset if they were not offered this chance. There is no existing research involving patients. Aim: To understand the views and feelings of patients in palliative care settings towards corneal donation and explore their opinions regarding the timing of its discussion. Design: This is an exploratory study based at one UK palliative care unit. A census sampling method was used. Nine participants took part in semi-structured interviews and thematic analysis was undertaken. Results: Themes found included altruistic motivation and the value of sight. Family views were important, but the influence on final decisions varied. The timing of discussion relative to the illness trajectory was important; patients want to be able to engage fully in conversations and had concerns about not being able to think clearly when closer to death. Participants also associated discussion of donation as an indication of a poor prognosis. Patients prefer face-to-face discussions with someone whom they had a close rapport. Many had misconceptions about eligibility. Conclusion: This is the first study to engage directly with palliative care patients and to establish their views on the timing of corneal donation discussions. Patients are willing to discuss donation, and further exploration of patient views in this area should be undertaken.

scholarly journals Dementia in People with a Turkish Migration Background: Experiences and Utilization of Healthcare Services

2020 ◽  
Vol 77 (2) ◽  
pp. 865-875
Author(s):  
Jessica Monsees ◽  
Tim Schmachtenberg ◽  
Wolfgang Hoffmann ◽  
Amy Kind ◽  
Andrea Gilmore-Bykovskyi ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Help Seeking ◽  
Qualitative Content Analysis ◽  
Relevant Information ◽  
Healthcare Services ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Turkish Culture ◽  
Willingness To Use

Background: As the proportion of older people with migration background (PwM) increases, the proportion of older PwM with dementia might also increase. Dementia is underdiagnosed in this group and a large proportion of PwM with dementia and family caregivers are not properly supported. Healthcare utilization is lower among older migrant populations. Thus, a better understanding of how PwM and family caregivers perceive their situation and how they experience healthcare services is needed to improve utilization of the healthcare system. Objective: Analyze how family caregivers of PwM with dementia experience their situation, why healthcare services are utilized less often, and what can be done to reverse this. Methods: Eight semi-structured interviews were conducted with people with Turkish migration background caring for PwM with dementia. Qualitative content analysis was used for data analysis. Results: Daily care was performed by one family member with the support of others. Healthcare services were used by most participants. Participants identified a need for better access to relevant information and incorporation of Turkish culture into healthcare services. Conclusion: PwM face similar challenges in taking care of persons with dementia as those without migration background. There is a willingness to use services, and services embracing Turkish culture would help to reduce hesitance and make affected people feel more comfortable, thereby increasing utilization and satisfaction. A limitation of this study is that participants were already connected to health services, which may not reflect the help-seeking behavior of those in the Turkish community who are not involved in healthcare.

scholarly journals Patient and family perceptions of hospice services: ‘I knew they weren’t like hospitals’

2013 ◽  
Vol 5 (3) ◽  
pp. 206 ◽  
Author(s):  
Yvonne Bray ◽  
Felicity Goodyear-Smith
Keyword(s):  
Palliative Care ◽  
Ethnic Diversity ◽  
Care Service ◽  
Family Members ◽  
Ethnic Disparities ◽  
Palliative Care Service ◽  
Cultural Groups ◽  
Structured Interviews ◽  
Information Giving ◽  
Family Perceptions

INTRODUCTION: The vision for palliative care service provision in New Zealand is for all people who are dying and their families to have timely access to culturally appropriate, quality palliative care services. An Auckland hospice’s records show that the ethnically diverse population statistics were not reflected in the referrals for hospice services. The aim of this research was to gain a patient-and-their-family perspective on the hospice, including exploration of components of service care that could be improved for various cultural groups. METHODS: Patients currently under the care of the hospice and family members were recruited from hospice records. Semi-structured interviews were conducted to explore the emerging issues. The study collected data from a purposive sample of 18 palliative care patients or carer family members, ranging in age from 39 to 81 years, who reflected the ethnic diversity of the population of the region. Interviewing was carried out by an experienced research assistant and continued until data saturation was reached. FINDINGS: Four key themes emerged – hospice personnel’s approach to patients, quality of service, cultural barriers, and strategies for future improvement. It was determined that the latter two were the most significant to address in this article. CONCLUSION: The study revealed the need for information-giving and education, including public profiling of the hospice to strengthen community involvement. Strategies to reduce ethnic disparities include strengthening the awareness of, and access to, services by connecting with cultural groups through churches, community and specific cultural media. KEYWORDS: Cultural competency; hospice care; palliative care; patient education; terminal care

scholarly journals Three-year review of a capacity building pilot for a sustainable regional network on food, nutrition and health systems education in India

2021 ◽  
pp. bmjnph-2020-000180
Author(s):  
Luke Buckner ◽  
Harrison Carter ◽  
Anand Ahankari ◽  
Rinku Banerjee ◽  
Somnath Bhar ◽  
...  
Keyword(s):  
Data Collection ◽  
Capacity Building ◽  
Nutrition Education ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Extended Period ◽  
Development Stage ◽  
Structured Interviews ◽  
Nutrition And Health ◽  
Attitudes And Practices

BackgroundIn Kolkata (India), there are high rates of malnourished children (45.9%) under the age of three, impacting growth, organ development, function, and cognition. Mothers have a major role to play during this crucial development stage, with research showing nutrition knowledge, attitudes and practices (KAP) of mothers are important determinants of childhood malnutrition.AimsTo document 3 years of capacity building towards a sustainable nutrition education network in Kolkata, India, while assessing the ability to perform data collection in the form of needs assessments, impact assessments and capacity reviews.MethodsDescriptive review and analysis of engagement and impact from 3 years of work by the NNEdPro Global Centre for Nutrition and Health, initiating locally led nutrition education interventions. Mapping to the Indian National Nutrition Strategy was also performed to review adherence to nationwide priorities surrounding nutrition and determine the wider application potential of the network.ResultsTwo simultaneous projects were taken forward by a team of local healthcare professionals and student champions. Project 1—medical college workshops for medical student nutrition education with added focus on underserved populations, Project 2—preparation for a ‘Mobile Teaching Kitchen’ (MTK) in marginalised communities to empower local women as nutrition educators.Data collection methods used for analysing markers of impact and sustainability were semi-structured interviews of the community members, and KAP questionnaires to assess response to educational sessions.ConclusionWith local support it is possible to create and sustain fieldwork for an extended period with meaningful outputs and impact. This initiative demonstrates that it is possible to use healthcare professionals, students and volunteers with low-intensity training and a low-cost approach to produce action research with considerable impact and results in rapid, reliable and robust manner.

scholarly journals Older Adults’ Experience of Meaning at the End of Life in Two Danish Hospices: A Qualitative Interview Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Dorte Toudal Viftrup ◽  
Christina Prinds ◽  
Ricko Damberg Nissen ◽  
Vibeke Østergaard Steenfeldt ◽  
Jens Søndergaard ◽  
...  
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Death And Dying ◽  
Structured Interviews ◽  
Qualitative Interview Study ◽  
Imminent Death ◽  
Medical Paradigm ◽  
Chronological Time

The aim of this study was to explore how older adults (aged > 65) confronted with imminent death express their thoughts and feelings about death and dying and verbalize meaning. Furthermore, the aim was to investigate how health professionals could better address the needs of this patient group to experience meaning at the end of life. The study applied a qualitative method, involving semi-structured interviews with 10 participants at two hospices. The method of analysis was interpretative phenomenological analysis. We found three chronological time-based themes: (1) Approaching Death, (2) The time before dying, and (3) The afterlife. The participants displayed scarce existential vernacular for pursuing meaning with approaching death. They primarily applied understanding and vocabulary from a medical paradigm. The participants’ descriptions of how they experienced and pursued meaning in the time before dying were also predominantly characterized by medical vernacular, but these descriptions did include a few existential words and understandings. When expressing thoughts and meaning about the afterlife, participants initiated a two-way dialogue with the interviewer and primarily used existential vernacular. This indicates that the participants’ scarce existential vernacular to talk about meaning might be because people are not used to talking with healthcare professionals about meaning or their thoughts and feelings about death. They are mostly “trained” in medical vernacular. We found that participants’ use of, respectively, medical or existential vernacular affected how they experienced meaning and hope at the end of life. We encourage healthcare professionals to enter into existential dialogues with people to support and strengthen their experiences of meaning and hope at the end of life.

scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

scholarly journals Do Canadian and Japanese palliative care physicians perceive the concept of resilience differently?

2018 ◽  
Vol 5 (1) ◽  
Author(s):  
Shizuma Tsuchiya ◽  
Yusuke Takamiya ◽  
Alenoush Saroyan ◽  
Linda Snell
Keyword(s):  
Palliative Care ◽  
North American ◽  
Healthcare Professionals ◽  
Care Physician ◽  
Theory Approach ◽  
North American Society ◽  
Structured Interviews ◽  
American Society ◽  
Grounded Theory Approach ◽  
Palliative Care Physician

Teaching about resilience is one of the biggest challenges in medical education. One of the problems of currently accepted definitions is that they attribute individualistic notions mainly originating in North American society, such as “endure ongoing hardship,” “thrive on challenges,” “be healthy,” and “be stronger.” In response to this situation, Tsuchiya et al (2017) proposed a description of a broader model of a resilient physician in healthcare that incorporates concepts of self-definition as described in both North American and the East Asian societies; that is, “a person’s capacity to be aware of the aspects of the self differently identified in each context, and to consciously value oneself and others in the context”. However, the concept is still theoretical, and more empirical understanding is needed.This presentation will examine the findings from our exploratory study on physician resilience using semi-structured interviews with 20 palliative care physicians (10 each in Canada and Japan) to answer the following questions:(1) Are there any differences in the way Canadian and Japanese palliative care physician perceive resilience? (2) What factors might affect the similarities or differences of their perceptions of resilience? (3) Are these findings consistent with Tsuchiya’s description? Following qualitative analysis using a grounded theory approach, a schematic representation of resilience in physicians will be offered, to inform a coherent educational program for resilient healthcare professionals. 

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell.Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

scholarly journals Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation

2020 ◽  
pp. archdischild-2020-320189
Author(s):  
Sarah Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Jeremy Dale
Keyword(s):  
Palliative Care ◽  
Healthcare System ◽  
Interpersonal Relationships ◽  
Healthcare Professionals ◽  
Family Members ◽  
Healthcare Services ◽  
Diverse Range ◽  
Specialist Services ◽  
Qualitative Interview Study ◽  
Life Threatening

ObjectivesTo understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.DesignLongitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.SettingCommunity and hospital settings in the West Midlands, UK.ParticipantsChildren with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.Findings31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of ‘fighting’ a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child’s condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family’s emotional burden.ConclusionsThere is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.

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