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International Journal of Nursing Studies Jun 2024The number of people with dementia is on the rise worldwide, and dementia care has become the focus of global health services. People with dementia are primarily cared... (Review)
Review
BACKGROUND
The number of people with dementia is on the rise worldwide, and dementia care has become the focus of global health services. People with dementia are primarily cared for by informal caregivers, with spouses seen as a particularly vulnerable group. Focusing on the spousal caregiving experience and having a good caregiver identity contributes to group bonding and enhanced social support.
OBJECTIVE
To explore the dynamic changes that occur in the caregiving experience of spouse caregivers and explicate the identity of spouses during this process alongside its causes.
DESIGN
A qualitative systematic review.
DATA SOURCE
The following eight electronic databases were searched: PubMed, Web of Science (Core Collection), The Cochrane Library, Embase, CINAHL and CNKI, WanFang and Vip.
REVIEW METHODS
The Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) and Joanna Briggs Institute Reviewer's Manual criteria were used to report the results. Study screening and data extraction were conducted independently by two reviewers, and quality was assessed using the Joanna Briggs Institute's Qualitative Research Standard Assessment tool. Data synthesis was performed using thematic analysis.
RESULTS
A total of 15 studies were included and synthesized into three analytical themes: (1) attitudes and emotions toward dementia, (2) emotional ups and downs in dementia care, and (3) who am "I". In binary care, patience and marital responsibilities are identified as facilitators, while care burden and social isolation are identified as hindrances. In addition, gender differences were identified as influencers of identity.
CONCLUSIONS
In this review, spouse identity of people with dementia is complex and affects caregiving experience together with dementia cognition. Disease cognition, caregiving burden and social isolation are identified. Interventions for barriers are suggested to enhance social support.
Topics: Dementia; Humans; Caregivers; Spouses; Qualitative Research
PubMed: 38552470
DOI: 10.1016/j.ijnurstu.2024.104757 -
Palliative & Supportive Care Oct 2023Cancer does affect not only the lives of the patients but also that of their spouses. The aims of this systematic review are to (i) explore the gender differences in the... (Review)
Review
OBJECTIVES
Cancer does affect not only the lives of the patients but also that of their spouses. The aims of this systematic review are to (i) explore the gender differences in the impact of caregiving for cancer on spousal caregivers, (ii) facilitate the conceptual understanding of gender differences in caregiving, and (iii) identify directions for future research and clinical practice targeting spousal caregivers.
METHODS
A comprehensive search was conducted of the electronic databases of MEDLINE, PsycINFO, EBSCO, and CINAHL Plus for papers published in English between 2000 and 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were used to identify, select, appraise, and synthesize the studies.
RESULTS
A total of 20 studies from seven countries were reviewed. Findings of the studies were presented using the biopsychosocial model. Spousal caregivers of cancer patients suffered from physical, psychological, and socioeconomic morbidities, with female spousal caregivers reporting a higher level of distress. The gendered positioning of spousal caregivers in the societal context had further brought about over-responsibility and self-sacrifice among women.
SIGNIFICANCE OF RESULTS
The gendered positions of cancer spousal caregivers further illustrated the gender differences in the caregiving experiences and consequences. Health-care professionals in routine clinical practice should be proactive in identifying physical, mental, and social morbidities among cancer spousal caregivers, particularly female ones, and providing timely interventions. Health-care professionals should recognize the pressing need for empirical research, political engagement, and action plans to address the health status and health-related behaviors of patients' spouses along the cancer trajectory.
Topics: Humans; Female; Caregivers; Sex Factors; Spouses; Stress, Psychological; Neoplasms
PubMed: 37334489
DOI: 10.1017/S1478951523000731 -
Cancer Cell Sep 2023In this issue of Cancer Cell, Topp et al. analyze data from 799 patients treated with pembrolizumab beyond progression by RECIST 1.1 across six trials. Although...
In this issue of Cancer Cell, Topp et al. analyze data from 799 patients treated with pembrolizumab beyond progression by RECIST 1.1 across six trials. Although 8.9%-24.4% of patients demonstrate a ≥30% reduction in target lesions, conversely 11%-18% of patients had a ≥20% increase. The benefits of treatment beyond progression must be carefully weighed against physical and financial toxicities.
Topics: Humans; Neoplasms; Disease Progression
PubMed: 37699332
DOI: 10.1016/j.ccell.2023.08.003 -
Scandinavian Journal of Public Health Jan 2024We review the literature on the social impacts of diseases, defined as the social consequences of having a disease on the people around the patient, such as spouses,... (Review)
Review
BACKGROUND
We review the literature on the social impacts of diseases, defined as the social consequences of having a disease on the people around the patient, such as spouses, caregivers and offspring. The two objectives of this study are to summarise the social outcomes commonly associated with diseases and to compare the social impact across a range of diseases.
METHODS
A systematic review of the social impact of disease in Nordic countries was conducted using PubMed, PsycINFO and Google Scholar (PROSPERO registration number CRD42022291796). All articles that met the inclusion criteria were reviewed. We tabulated all outcomes and diseases studied, and synthesised the evidence based on the perspectives of patients, spouse/caregiver and offspring.
RESULTS
A total of 135 studies met the eligibility criteria, covering 76 diseases and 39 outcomes. From the patient's perspective, diseases impact divorce and marriage rates, social functioning, likelihood of committing a crime and being a victim of crime. From the caregiver's perspective, diseases affect their health-related quality of life and physical and psychological health. From the offspring's perspective, diseases impact their development, health and social adversities in later life. Diseases generally had negative social impacts, but there were some diseases associated with positive impacts.
CONCLUSIONS
PubMed: 38166481
DOI: 10.1177/14034948231217365 -
Journal of Gastrointestinal Oncology Aug 2023Less than two percent of pancreatic neuroendocrine tumors (NETs) produce serotonin. Serotonin can cause carcinoid syndrome and less commonly carcinoid heart disease...
BACKGROUND
Less than two percent of pancreatic neuroendocrine tumors (NETs) produce serotonin. Serotonin can cause carcinoid syndrome and less commonly carcinoid heart disease (CHD). CHD is associated with increased mortality and requires a more aggressive approach. Here we present a rare case of a serotonin-producing pancreatic NET complicated by CHD at presentation and discuss timing of systemic therapy, liver-directed therapy, and heart failure management.
CASE DESCRIPTION
A 36-year-old white man presented with diarrhea, lower extremity edema, and exertional dyspnea. He was found to have a well-differentiated serotonin-producing pancreatic NETs grade three with bilobar liver metastasis complicated by carcinoid syndrome and CHD. His symptoms and disease burden improved with somatostatin analog and liver-directed therapy with bland embolization to control carcinoid symptoms and obtain rapid hormonal control to prevent progression of CHD. He concurrently received diuretics to manage his heart failure and was considered for valvular replacement surgery, which was deferred for optimal hormonal control.
CONCLUSIONS
Our case highlights the importance of multidisciplinary care for patients with pancreatic NETs and early identification and management of CHD. Although uncommon, serotonin-producing pancreatic NETs can present with CHD and require combination of somatostatin analogs, liver-directed therapy, and heart failure management.
PubMed: 37720425
DOI: 10.21037/jgo-22-909 -
Research in Nursing & Health Dec 2023The stress of disability significantly impacts an individual's quality of life and that of a spouse. Health empowerment, based on the idea that individuals may be...
The stress of disability significantly impacts an individual's quality of life and that of a spouse. Health empowerment, based on the idea that individuals may be successful despite disability, may be meaningful to disabled persons and their spouse carers. This cross-sectional survey study aimed to explore the effect of health empowerment on the health-related quality of life (HRQOL) of older individuals with disabilities and their spouse carers on both a personal (actor effect) and interpersonal level (partner effect). A total of 1092 dyads of older individuals with disabilities and their spouse carers residing in communities were recruited from seven provinces in China. Two separate Actor-Partner Interdependence Model analyses were conducted to examine the impact of health empowerment on the two domains of HRQOL: the Physical Component Score (PCS) and the Mental Component Score (MCS). The results revealed that health empowerment had actor effects on the PCS and MCS of older individuals with disabilities, as well as on the PCS and MCS of their spouse carers. However, no significant partner effects of health empowerment on the PCS and MCS of either the individuals with disabilities or their spouse caregivers were observed. Empowering individuals with disabilities and their spouse carers may help them enhance their own HRQOL, both physically and mentally. However, more research is required to determine the interpersonal effect of health empowerment on the HRQOL.
Topics: Humans; Aged; Quality of Life; Cross-Sectional Studies; Caregivers; Spouses; Disabled Persons
PubMed: 37821227
DOI: 10.1002/nur.22345 -
Palliative & Supportive Care Feb 2024The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.
OBJECTIVES
The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.
METHODS
A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care.
RESULTS
Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient's gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner.
SIGNIFICANCE OF RESULTS
These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient's or spouse's/partner's gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient's wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.
Topics: Humans; Female; Male; Transgender Persons; Palliative Care; Gender Identity; Cross-Sectional Studies; Health Personnel
PubMed: 37448209
DOI: 10.1017/S1478951523001104 -
Circulation. Cardiovascular... Apr 2024Dual antiplatelet therapy-the combination of aspirin and a P2Y12 inhibitor-remains the standard antiplatelet regimen recommended to prevent ischemic complications... (Review)
Review
Dual antiplatelet therapy-the combination of aspirin and a P2Y12 inhibitor-remains the standard antiplatelet regimen recommended to prevent ischemic complications immediately after percutaneous coronary intervention. Nonetheless, recent advances in stent technologies, percutaneous coronary intervention techniques, adjunctive pharmacotherapy for secondary prevention, and the rising awareness of the prognostic impact of bleeding, which are inevitably associated with dual antiplatelet therapy, led to the investigation of alternative antiplatelet regimens related to fewer bleeding and a preserved ischemic protection. Thrombotic complications occur mostly in the first months after percutaneous coronary intervention, while the risk of bleeding remains stable over time; this observation laid the foundation of the concept of antiplatelet de-escalation, consisting of a more intense antiplatelet regimen early after percutaneous coronary intervention, followed by a less potent antiplatelet therapy thereafter. According to new definitions proposed by the Academic Research Consortium, de-escalation can be achieved by discontinuation of 1 antiplatelet agent, switching from a potent P2Y12 inhibitor to clopidogrel, or by reducing the dose of antiplatelet agents. This review discusses the rationale and the evidence supporting antiplatelet de-escalation, provides practical guidance to use these new regimens, and gives insights into future developments in the field.
Topics: Humans; Platelet Aggregation Inhibitors; Acute Coronary Syndrome; Treatment Outcome; Clopidogrel; Hemorrhage; Percutaneous Coronary Intervention
PubMed: 38626078
DOI: 10.1161/CIRCINTERVENTIONS.123.013263 -
Palliative & Supportive Care Oct 2023The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their...
OBJECTIVES
The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity.
METHODS
A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners.
RESULTS
There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner.
SIGNIFICANCE OF RESULTS
These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.
Topics: Humans; Female; Male; Palliative Care; Gender Identity; Sexual Behavior; Sexual and Gender Minorities; Attitude of Health Personnel
PubMed: 37435654
DOI: 10.1017/S1478951523001037 -
MedRxiv : the Preprint Server For... Oct 2023Cognitive impairment in older adults poses considerable challenges, and the role of family support becomes increasingly crucial. This study aims to examine the impact of...
BACKGROUND
Cognitive impairment in older adults poses considerable challenges, and the role of family support becomes increasingly crucial. This study aims to examine the impact of children's residential proximity and spousal presence on the key modifiable risk factors for dementia among older adults with cognitive impairment.
METHODS
Utilizing the Health and Retirement Study (HRS) data from 1995 to 2018, we analyzed 14,731 participants (35,840 person-waves) aged 50 and older with cognitive impairment. Family support was characterized based on the presence of a spouse and residential proximity to children. Smoking, depressive symptoms and social isolation were included as the key modifiable risk factors for dementia identified in later life. Using mixed-effects logistic regressions, associations between access to family support and the modifiable risk factors were determined, adjusting for various socio-demographic and health-related factors.
RESULTS
Significant associations were found between access to family support and modifiable risk factors for dementia. Cognitively impaired older adults with less available family support, characterized by distant-residing children and the absence of a spouse, had significantly higher risks of smoking, depressive symptoms, and social isolation. Moreover, we revealed a consistent gradient in the prevalence of the risk factors based on the degree of family support. Relative to older adults with a spouse and co-resident children, those without a spouse and with all children residing further than 10 miles displayed the highest risks of smoking, depressive symptoms, and social isolation.
CONCLUSION
Access to family support, particularly from spouses and proximate children, plays a protective role against key modifiable risk factors for dementia in older adults with cognitive impairment. The findings highlight the need for bolstering family and social support systems to enhance the well-being of this vulnerable population.
PubMed: 37961588
DOI: 10.1101/2023.10.24.23297470