scholarly journals The lived experience of late midlife hemodialysis patients with diabetic nephropathy

2020 ◽  
Vol 8 (1) ◽  
pp. 32
Author(s):  
Hui-Man Huang ◽  
Ting-Ju Lin ◽  
Lee-Jen Wu Suen
Keyword(s):  
Diabetic Nephropathy ◽  
Lived Experience ◽  
End Of Life ◽  
Health Care Providers ◽  
Leisure Activities ◽  
Care Providers ◽  
Middle Aged ◽  
Aged Patients ◽  
Life And Death ◽  
Physical Suffering

Background: Diabetic nephropathy is the primary reason that patients receive hemodialysis (HD), a frequent and lifelong treatment. However, HD is burdensome for middle–aged individuals, who still have personal and professional responsibilities, and can have a significant and disruptive impact on their lives.Aim: This study seeks to better understand the daily life experiences of middle-aged patients with diabetic nephropathy who are receiving HD.Methods: This qualitative study used purposive sampling to recruit participants from a teaching hospital in southern Taiwan from November 2014 to May 2015. The data was collected through in-depth interviews from 12 middle-aged diabetic nephropathy patients receiving HD. Data analysis was performed using Colaizzi’s phenomenological method.Results: The significant statements were categorized into four themes and 10 subthemes: (1) Mental and physical suffering: shock and refusing HD, loss of control in certain aspects of life, burdened with complications from diabetes and HD conditions. (2) Social isolation: barriers to normal life and leisure activities, financial hardship resulting in reduced self-esteem. (3) Moving toward a new adjusted lifestyle: acknowledging illness and accepting HD, changing their perspective towards HD, learning to improve their own health, and (4) End-of-life evaluation: appreciation of life and death, coming to terms with mortality, and increased time spent with their families.Conclusions: The findings of this study showed that middle-aged patients receiving HD typically underwent a process of mental and physical suffering to adaptation and end-of-life reflection. These findings can help health care providers and family members better understand the experiences and hardships of patients receiving HD, which allows for better support and improved nursing care.

scholarly journals A descriptive analysis of end-of-life discussions for high-grade glioma patients

2021 ◽  
Author(s):  
Ai Chikada ◽  
Sayaka Takenouchi ◽  
Yoshiki Arakawa ◽  
Kazuko Nin
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Patient Participation ◽  
High Grade Glioma ◽  
Team Approach ◽  
High Grade ◽  
Care Providers ◽  
Patient Goals ◽  
Significant Difference ◽  
Eol Care

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.

scholarly journals The lived experience of people with obesity: study protocol for a systematic review and synthesis of qualitative studies

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Emma Farrell ◽  
Marta Bustillo ◽  
Carel W. le Roux ◽  
Joe Nadglowski ◽  
Eva Hollmann ◽  
...  
Keyword(s):  
Systematic Review ◽  
Lived Experience ◽  
Health Care Providers ◽  
Evidence Synthesis ◽  
Qualitative Studies ◽  
Qualitative Evidence Synthesis ◽  
Care Providers ◽  
Critical Appraisal Skills ◽  
Health Complications

Abstract Background Obesity is a prevalent, complex, progressive and relapsing chronic disease characterised by abnormal or excessive body fat that impairs health and quality of life. It affects more than 650 million adults worldwide and is associated with a range of health complications. Qualitative research plays a key role in understanding patient experiences and the factors that facilitate or hinder the effectiveness of health interventions. This review aims to systematically locate, assess and synthesise qualitative studies in order to develop a more comprehensive understanding of the lived experience of people with obesity. Methods This is a protocol for a qualitative evidence synthesis of the lived experience of people with obesity. A defined search strategy will be employed in conducting a comprehensive literature search of the following databases: PubMed, Embase, PsycInfo, PsycArticles and Dimensions (from 2011 onwards). Qualitative studies focusing on the lived experience of adults with obesity (BMI >30) will be included. Two reviewers will independently screen all citations, abstracts and full-text articles and abstract data. The quality of included studies will be appraised using the critical appraisal skills programme (CASP) criteria. Thematic synthesis will be conducted on all of the included studies. Confidence in the review findings will be assessed using GRADE CERQual. Discussion The findings from this synthesis will be used to inform the EU Innovative Medicines Initiative (IMI)-funded SOPHIA (Stratification of Obesity Phenotypes to Optimize Future Obesity Therapy) study. The objective of SOPHIA is to optimise future obesity treatment and stimulate a new narrative, understanding and vocabulary around obesity as a set of complex and chronic diseases. The findings will also be useful to health care providers and policy makers who seek to understand the experience of those with obesity. Systematic review registration PROSPERO CRD42020214560.

Pandemic Visitation Restrictions at the End of Life

2021 ◽  
Vol 46 (11) ◽  
pp. 3-4
Author(s):  
Molly Antone ◽  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Treatment Options ◽  
Care Providers ◽  
Medical Practices ◽  
Whole Person ◽  
Catholic Health Care

Dying today looks dramatically different than it did a century ago, largely due to wider treatment options and more specialized medical practices. Often missing from these advancements is the focus on factors relative to a patient’s total circumstances. Especially in light of the recent pandemic, it is incumbent upon Catholic health care providers to treat who whole person rather than simply focus on more utilitarian philosophies of care.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

scholarly journals Family Behaviors as Unchanging Obstacles in End-of-Life Care: 16-Year Comparative Data

2020 ◽  
Vol 29 (4) ◽  
pp. e81-e91
Author(s):  
Renea L. Beckstrand ◽  
Jasmine B. Jenkins ◽  
Karlen E. Luthy ◽  
Janelle L. B. Macintosh
Keyword(s):  
Intensive Care Unit ◽  
Critical Care ◽  
Intensive Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Critical Care Nurses ◽  
Life Care ◽  
Care Providers ◽  
Over Time

Background Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined. Objective To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time. Methods In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999. Results Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient’s end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design. Conclusions The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.

End-of-Life Preparations Among LGBT Older Canadian Adults: The Missing Conversations

2019 ◽  
Vol 88 (4) ◽  
pp. 358-379 ◽  
Author(s):  
Brian de Vries ◽  
Gloria Gutman ◽  
Áine Humble ◽  
Jacqueline Gahagan ◽  
Line Chamberland ◽  
...  
Keyword(s):  
End Of Life ◽  
Social Services ◽  
Health Care Providers ◽  
Gay And Bisexual Men ◽  
Bisexual Men ◽  
Care Providers ◽  
Bisexual Women ◽  
Individual Interviews ◽  
Transgender Persons ◽  
And Bisexual

LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups; 40 participants), lesbian/bisexual women (5 groups; 29 participants), and transgender persons (3 interviews, 4 groups; 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

2020 ◽  
Vol 37 (12) ◽  
pp. 1009-1015
Author(s):  
Laura K. Sedig ◽  
Jessica L. Spruit ◽  
Trisha K. Paul ◽  
Melissa K. Cousino ◽  
Harlan McCaffery ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Care Providers ◽  
Life Experiences ◽  
The United States ◽  
Parental Perception ◽  
Care Providers ◽  
Supportive Services ◽  
Bereaved Parents ◽  
Actual Decision

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child’s life. This study asked bereaved parents to reflect on their child’s end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child’s life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making ( P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Diabetes mellitus: endotheldiszfunkció és haemostasiselváltozások

2018 ◽  
Vol 159 (33) ◽  
pp. 1335-1345 ◽  
Author(s):  
Barna Babik ◽  
Ferenc Peták ◽  
Szilvia Agócs ◽  
Ivett Blaskovics ◽  
Endre Alács ◽  
...  
Keyword(s):  
Diabetes Mellitus ◽  
Endothelial Dysfunction ◽  
Health Care Providers ◽  
Perioperative Care ◽  
Coagulation Factors ◽  
Diabetic Patients ◽  
Low Grade ◽  
Care Providers ◽  
Aged Patients ◽  
Global Challenge

Abstract: Diabetes mellitus involves a group of chronic metabolic disorders with elevated blood glucose concentrations. Since this disease needs lifelong treatment and care, the medical and social aspects present major public health concerns and pose a global challenge for health care providers. The number of aged patients with degenerative diseases undergoing surgical procedures is continuously increasing, resulting in an overwhelming dominance of diabetes in the perioperative care. There is a particular need for an increased awareness of diabetic patients in cardiovascular units, where the incidence of this disease reaches as high as 30–40%. The main hallmarks of the pathologic metabolic milieu of diabetes are hyperglycaemia, insulin resistance and pathologic lipid metabolism. The biochemical, cellular and organ-level pathophysiological changes lead to endothelial dysfunction including a low-grade prothrombotic balance, inflammatory state and, as a consequence, impaired micro- and macrocirculation. Diabetes is also followed by platelet dysfunction resulting from intracellular hyperglycaemia, because thrombocytes have insulin-independent glucose transporters in their cell membrane. The levels of the coagulation factors of the plasma are increased, and these factors are also modified by oxidation and glycation. Diabetes mellitus is a prothrombotic condition resulting from direct and indirect tendencies of the endothelial platelet and the plasma coagulation factors. The basic “bench to clinical basics” knowledge of the endothelial dysfunction and prothrombotic balance in diabetes may contribute to the better understanding of the clinical focuses in the perioperative care of patients with diabetes mellitus. Orv Hetil. 2018; 159(33): 1335–1345.

The Evolutionary Nature of Parent–Provider Relationships at Child’s End of Life With Cancer

2020 ◽  
Vol 26 (3) ◽  
pp. 254-268
Author(s):  
Maiara R. dos Santos ◽  
Regina Szylit ◽  
Janet A. Deatrick ◽  
Kim Mooney-Doyle ◽  
Debra L. Wiegand
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Hospital Setting ◽  
Study Data ◽  
Care Providers ◽  
Research And Practice ◽  
Parental Experiences ◽  
Bereaved Parents ◽  
New Meanings ◽  
Complex Relationships

Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child’s end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.

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