Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

scholarly journals Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

2020 ◽  
Author(s):  
Xanthe de Voogd ◽  
Dick Willems ◽  
Marieke Torensma ◽  
Bregje Onwuteaka-Philipsen ◽  
Jeanine Suurmond
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Good Care ◽  
Structured Interviews ◽  
Value Differences ◽  
Centered Care ◽  
Family Centered

Abstract Background An important aim of palliative care is to improve the family’s and patient’s quality of life. To ensure quality of life for migrant patients’ families, the objective of this study was to get insight into the dignity of informal caregivers. This could provide insight on family-centered care for migrant patients. Methods 20 semi-structured interviews with informal caregivers with a Turkish, Moroccan or Surinamese migration background living in the Netherlands were analyzed thematically. Results We found the dignity of the patient and the dignity of the informal caregiver were strongly related. Most important for the dignity of the informal caregiver was to ensure good care for and preserve the dignity of the patient. Ensuring good care encompassed advocating for good and dignified care and wishes of the patient. For many caregivers, it also included delivering care to the patient themselves or with other family members, despite having to give up a part of their own lives. Giving care themselves was part of maintaining a good relationship, it could cater to the patient’s preferences or preserve the patient’s dignity, and it could come with valuable aspects such as times for good conversations. The informal caregiver’s dignity and the patient’s dignity were often compromised simultaneously. When informal caregivers felt healthcare professionals were impairing the dignity of the patient, their own dignity suffered. Also, dignified behavior by the patient such as thankfulness influenced the informal caregiver’s dignity positively, undignified behavior of the informal caregiver themselves, such as showing their emotions to significant others could influence it negatively. According to informal caregivers, healthcare professionals can help them preserve their dignity by taking their advice about the patient seriously, informing them about the disease and the patient’s prognosis, and dealing respectfully with value differences at the end of life. Conclusion The dignity of migrant patients’ informal caregivers in the last phase of the patient’s life is entwined with ensuring good care for and dignity of the patient. Healthcare professionals could strengthen the informal caregiver’s dignity by supporting their role.

scholarly journals Medical Care-Related Decisions among Patients Diagnosed with Early Stage Malignant Brain Tumor: A Qualitative Study

2020 ◽  
Vol 7 ◽  
pp. 233339362096005
Author(s):  
Hanako Numata ◽  
Maiko Noguchi-Watanabe ◽  
Akitake Mukasa ◽  
Shota Tanaka ◽  
Shunsaku Takayanagi ◽  
...  
Keyword(s):  
Decision Making ◽  
Medical Care ◽  
Early Stage ◽  
Healthcare Providers ◽  
Decision Making Process ◽  
Theory Approach ◽  
Structured Interviews ◽  
Fear And Anxiety ◽  
Grounded Theory Approach ◽  
Insight Into

Medical care-related decision-making among patients with malignant brain tumors has not been sufficiently discussed. This study aimed to develop a framework for understanding patients’ experiences in the decision-making process. Semi-structured interviews with 14 patients were analyzed using a grounded theory approach, focusing on their 48 decision-making points. Additionally, interviews with two family members and seven healthcare providers, and participant observations were used to gain contextual insight into patients’ experiences. Patients faced decisions while they struggled in vulnerability under shock, fear, and anxiety while hoping. Under this context, they showed four decision-making patterns: (1) led by the situation, (2) controlled by others, (3) entrusted someone with the decision, and (4) myself as a decision-making agent. Across these patterns, the patients were generally satisfied with their decisions even when they did not actively participate in the process. Healthcare providers need to understand patients’ contexts and their attitudes toward yielding decision-making to others.

scholarly journals Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

2020 ◽  
Author(s):  
Xanthe de Voogd ◽  
Dick Willems ◽  
Marieke Torensma ◽  
Bregje Onwuteaka-Philipsen ◽  
Jeanine Suurmond
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Good Care ◽  
Structured Interviews ◽  
Positive Interaction ◽  
Migrant Communities ◽  
Centered Care

Abstract 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.

scholarly journals Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

2020 ◽  
Author(s):  
Xanthe de Voogd ◽  
Dick Willems ◽  
Marieke Torensma ◽  
Bregje Onwuteaka-Philipsen ◽  
Jeanine Suurmond
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Good Care ◽  
Structured Interviews ◽  
Positive Interaction ◽  
Migrant Communities ◽  
Centered Care

Abstract 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.

scholarly journals Conceptualizing difference: an analysis of physicians’ views on delivering care to asylum seekers

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
R Jahn ◽  
L Biddle
Keyword(s):  
Medical Care ◽  
Patient Group ◽  
Health Care Professionals ◽  
Patient Population ◽  
Asylum Seekers ◽  
Care Provision ◽  
Structured Interviews ◽  
Appropriate Care ◽  
Adequate Care ◽  
Delivery Of Medical Care

Abstract Background International migration leads to an increasingly fluctuating and superdiverse migrant population in reception countries. In Germany, structural, legal, social and political barriers to adequate care complicate the ability of health care professionals to respond to the challenges associated with caring for such a dynamic patient population. In this analysis, we explore the views of physicians working with asylum seekers and refugees in Germany, and aim to identify the barriers and enablers they face in providing appropriate care. Methods We performed a secondary qualitative analysis of 16 semi-structured interviews conducted for two studies on the delivery of medical care to asylum seekers in Germany. To examine physicians' views towards their work with asylum seekers, we analysed evaluative judgements on interpersonal and workplace factors, the external environment, the physician's own self, and individual medical conduct. Analysis was conducted by identifying cross-cutting themes through thematic analysis and mapping these onto a framework matrix. Results We found that evaluative judgements made by physicians providing care to asylum seekers emphasized one of three conceptualisations of “difference”: regarding personal or cultural attributes of the patient group; the spaces of care provision; or the context of asylum seeking patients. Emphasis on differences of the patient population and the spaces of care provision to asylum seekers was found to impede appropriate care, while physicians emphasizing contextual factors reported more responsive medical practices. Discussion Our findings suggest that processes of “othering” asylum seekers as a patient group as well as the heterotopic spaces of care provision endanger the doctor-patient relationship and responsiveness of care. Appropriate training, physical and human resources and encouraging support between physicians working with asylum seeking patients could alleviate these processes. Key messages Physicians’ conceptualisations of “difference” in providing care to asylum seekers focus on the patient group, workplace, or structural context; and affect the way in which medical care is provided. Structural competency training, resource investments, and clear structures could reduce physicians’ experiences of “difference” of the patient group and workplace, and facilitate responsive care.

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

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
X. de Voogd ◽  
D. L. Willems ◽  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
J. L. Suurmond
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Good Care ◽  
Structured Interviews ◽  
Positive Interaction ◽  
Migrant Communities ◽  
Centered Care

Abstract 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.

A design contribution to the entrepreneurial experience

2019 ◽  
Vol 2 (1) ◽  
Author(s):  
Juan David ROLDAN ACEVEDO ◽  
Ida TELALBASIC
Keyword(s):  
Product Development ◽  
Qualitative Analysis ◽  
Design Research ◽  
Recent Literature ◽  
Early Stage ◽  
Entrepreneurial Activity ◽  
Value Proposition ◽  
Structured Interviews ◽  
User Centric ◽  
Constant Growth

In recent history, different design approaches have been entering fields like management and strategy to improve product development and service delivery. Specifically, entrepreneurship has adopted a user-centric mindset in methodologies like the business canvas model and the value proposition canvas which increases the awareness of the users’ needs when developing solutions. What happens when a service design approach is used to understand the entrepreneurs’ experience through the creation of their startups? Recent literature suggests that entrepreneurial activity and success is conditioned by their local entrepreneurship ecosystem. This study investigates the Entrepreneurship Ecosystem of Medellín, Colombia - an ecosystem in constant growth but that lacks qualitative analysis. The sample consists of 12 entrepreneurs in early-stage phase. The data was gathered with two design research methods: Cultural Probes and Semi-structured interviews. The analysis of the information collected facilitated the development of 4 insights about the entrepreneurs and an experience map to visualise and interpret their journey to create a startup. The results of this study reflected the implications of the ecosystem, the explanation of the users’ perceptions and awareness and propose a set of ideas to the local government to improve the experience of undertaking a startup in Medellín.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

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 The Lived Experiences of Stigmatization in the Process of HIV Status Disclosure among People Living with HIV in Taiwan

2021 ◽  
Vol 18 (10) ◽  
pp. 5089
Author(s):  
Chia-Hui Yu ◽  
Chu-Yu Huang ◽  
Nai-Ying Ko ◽  
Heng-Hsin Tung ◽  
Hui-Man Huang ◽  
...  
Keyword(s):  
Lived Experiences ◽  
Healthcare Professionals ◽  
Social Stigma ◽  
People Living With Hiv ◽  
Hiv Status ◽  
Structured Interviews ◽  
Two Phases ◽  
Hiv Status Disclosure ◽  
Living With Hiv ◽  
Status Disclosure

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.

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