scholarly journals Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Helen Close ◽  
Kamal Sidhu ◽  
Hazel Genn ◽  
Jonathan Ling ◽  
Colette Hawkins
Keyword(s):  
Social Welfare ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Legal Issues ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
North East ◽  
Day Services ◽  
Key Barrier ◽  
Psychological Benefit

Abstract Background Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers. Methods Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken. Results Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers. Conclusion Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as ‘critical noticers’, trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.

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.

End-of-life care in a pandemic: a primary healthcare perspective

2021 ◽  
Vol 3 (4) ◽  
pp. 151-155
Author(s):  
Amanda Armstrong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Life Care ◽  
New Ways Of Working ◽  
North East ◽  
District Nurses ◽  
New Models ◽  
Working Together ◽  
Care And Treatment

Amanda Armstrong, Dr D. Aref, Dr S. Namuq, Riccardo Arduinin, Rebecca Evans, Dr Ajula Gunasekera, Dr K. Hochstein-Mintzel, Dr N Hilton, Kate Larden, Dr Christine Whitlow This article will explore end-of-life care in the COVID-19 pandemic in north east Essex from the perspective of general practice. This article shows the new approaches that have been adopted to support people in the community at the end of life. These new ways of working demonstrated the resilience of healthcare professionals working together with the use of video to ensure that patients received the optimum care and treatment in their home at the end of their lives. It demonstrated that community teams such as district nurses, hospice staff, GPs and the lead nurse for end of life care could implement new ways of working to ensure joined up care and treatment. It also shows new models of working in the future.

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.

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 Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

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.

End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

2021 ◽  
pp. 003022282199734
Author(s):  
Guobin Cheng ◽  
Chuqian Chen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Web Of Science ◽  
Empirical Studies ◽  
Symptom Control ◽  
Mainland China ◽  
Spiritual Needs ◽  
Care Needs ◽  
Dying Patients

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

scholarly journals Being parent of a child with congenital heart disease, what does it mean? A qualitative research

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Nahid Dehghan Nayeri ◽  
Zahra Roddehghan ◽  
Farzad Mahmoodi ◽  
Parvin Mahmoodi
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Life Experience ◽  
The Body ◽  
Spiritual Needs ◽  
Structured Interviews ◽  
Financial Condition ◽  
Data Saturation

Abstract Background Childbirth is one of the invaluable human experiences and is associated with parental happiness. However, when a child is born with congenital heart disease, it creates emotional and mental distress. As a result, it changes the parents’ response to their child birth. Exploring parenthood experiences add to the body of knowledge and reveal new perspectives. In order to make healthcare professionals able to support these children and their families, they should first understand the meaning of this phenomenon. This study aimed to explore the meaning of parenting a child with Congenital Heart Disease in Iran. Methods A qualitative study was adopted with a conventional content analysis approach and constant comparative analysis. Participants in this study were 17 parents, including parents of children with congenital heart disease who were selected by purposeful sampling method. Semi-structured interviews were used for data collection and continued to data saturation. Data were analyzed via MAXQDA 10 software. Results Four categories and twenty three subcategories emerged as meaning of parenting a child with Congenital Heart Disease. Categories include “Emotional breakdown”, “The catastrophic burden of care”, “Spiritual beliefs of parents” and “The hard road” Conclusions Fully understanding the life experience of these families will allow the implementation of targeted health interventions. Hence, by understanding the meaning of parenting a child with Congenital Heart Disease, healthcare professionals can asses parents emotional statues, information and spiritual needs, financial condition, insurance and marital status using CHD standards so that support is individualized, sensitive and time appropriate.

scholarly journals Ethical considerations at the end-of-life care

2021 ◽  
Vol 9 ◽  
pp. 205031212110009
Author(s):  
Melahat Akdeniz ◽  
Bülent Yardımcı ◽  
Ethem Kavukcu
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Healthcare Professionals ◽  
Ethical Decision Making ◽  
Biomedical Ethics ◽  
Artificial Nutrition ◽  
Life Care ◽  
Ethical Challenges ◽  
Physician Assisted Suicide

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

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