Caregiving burden of informal caregivers of older adults with advanced cancer: The effects of rurality and education

Author(s):  
Huiwen Xu ◽  
Sindhuja Kadambi ◽  
Supriya G. Mohile ◽  
Shuhan Yang ◽  
Lee A. Kehoe ◽  
...  

Long-term care for older adults is highly affect by the COVID-19 outbreak. The objective of this rapid review is to understand what we can learn from previous crises or disasters worldwide to optimize the care for older adults in long term care facilities during the outbreak of COVID-19. We searched five electronic databases to identify potentially relevant articles. In total, 23 articles were included in this study. Based on the articles, it appeared that nursing homes benefit from preparing for the situation as best as they can. For instance, by having proper protocols and clear division of tasks and collaboration within the organization. In addition, it is helpful for nursing homes to collaborate closely with other healthcare organizations, general practitioners, informal caregivers and local authorities. It is recommended that nursing homes pay attention to capacity and employability of staff and that they support or relieve staff where possible. With regard to care for the older adults, it is important that staff tries to find a new daily routine in the care for residents as soon as possible. Some practical tips were found on how to communicate with people who have dementia. Furthermore, behavior of people with dementia may change during a crisis. We found tips for staff how to respond and act upon behavior change. After the COVID-19 outbreak, aftercare for staff, residents, and informal caregivers is essential to timely detect psychosocial problems. The consideration between, on the one hand, acute safety and risk reduction (e.g. by closing residential care facilities and isolating residents), and on the other hand, the psychosocial consequences for residents and staff, were discussed in case of other disasters. Furthermore, the search of how to provide good (palliative) care and to maintain quality of life for older adults who suffer from COVID-19 is also of concern to nursing home organizations. In the included articles, the perspective of older adults, informal caregivers and staff is often lacking. Especially the experiences of older adults, informal caregivers, and nursing home staff with the care for older adults in the current situation, are important in formulating lessons about how to act before, during and after the coronacrisis. This may further enhance person-centered care, even in times of crisis. Therefore, we recommend to study these experiences in future research.


2020 ◽  
pp. 1-9
Author(s):  
Hyunjin Noh ◽  
Lewis H. Lee ◽  
Chorong Won

Abstract Objective Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.


BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046600
Author(s):  
Anne-Marie Hill ◽  
Rachael Moorin ◽  
Susan Slatyer ◽  
Christina Bryant ◽  
Keith Hill ◽  
...  

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.


2015 ◽  
Vol 30 (1) ◽  
pp. 65-73 ◽  
Author(s):  
Sara Alves ◽  
Laetitia Teixeira ◽  
Maria J. Azevedo ◽  
Mafalda Duarte ◽  
Constança Paúl

Author(s):  
Michelle N. Lafrance ◽  
Elizabeth Dreise ◽  
Lynne Gouliquer ◽  
Carmen Poulin

Abstract The purpose of this research was to investigate how informal caregivers of older adults cope with and negotiate driving safety when their loved one is no longer safe to drive. Fifteen informal caregivers of an older adult living at home took part in the present study. Participants cared for individuals with a range of health conditions that significantly impaired driving safety, including dementia, Parkinson’s disease, macular degeneration, and stroke. A thematic analysis of participants’ accounts identified the complex interpersonal, social, and organisational context they encountered when their loved one did not recognise or acknowledge limitations in their ability to drive. This analysis highlights the ethical dilemma at the heart of caregivers’ experiences and identifies stake and blame as key considerations in the development of sensitive and effective policies and practices.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 12037-12037
Author(s):  
Kah Poh Loh ◽  
Christopher Seplaki ◽  
Reza Yousefi Nooraie ◽  
Jennifer Leigh Lund ◽  
Ronald M. Epstein ◽  
...  

12037 Background: Poor prognostic understanding of curability is associated with lower hospice use in patients with advanced cancer. Little is known if this holds true for older adults specifically. In addition, prognostic understanding are variably assessed and defined in prior studies. We evaluated the associations of poor prognostic understanding and patient-oncologist discordance in both curability and survival estimates with hospitalization and hospice use in older patients with advanced cancer. Methods: We utilized data from a national geriatric assessment cluster-randomized trial (URCC 13070: PI Mohile) that recruited 541 patients aged ≥70 with incurable solid tumor or lymphoma considering any line of cancer treatment and their oncologists. At enrollment, patients and oncologists were asked about their beliefs about cancer curability (options: 100%, > 50%, 50/50, < 50%, 0%, and uncertain) and estimates of patient’s survival (options: 0-6 months, 7-12 months, 1-2 years, 2-5 years, and > 5 years). Non-0% options were considered poor understanding of curability (uncertain was removed from the analysis) and > 5 years was considered poor understanding of survival estimates. Any difference in response options was considered discordant. We used generalized estimating equations to estimate adjusted odds ratios (AOR) assessing associations of poor prognostic understanding and discordance with hospitalization and hospice use at 6 months, adjusting for covariates and practice clusters. Results: Poor prognostic understanding of curability and survival estimates occurred in 59% (206/348) and 41% (205/496) of patients, respectively. Approximately 60% (202/336) and 72% (356/492) of patient-oncologist dyads were discordant in curability and survival estimates, respectively. In the first 6 months after enrollment, 24% were hospitalized and 15% utilized hospice. Poor prognostic understanding of survival estimates was associated with lower odds of hospice use (AOR 0.30, 95% CI 0.16-0.59) (Table). Discordance in survival estimates was associated with greater odds of hospitalization (AOR 1.64, 95% CI 1.01-2.66). Conclusions: Prognostic understanding may be associated with hospitalization or hospice use depending on how patients were queried about their prognosis and whether oncologists’ estimates were considered.[Table: see text]


Author(s):  
Sami Alkhatib ◽  
Jenny Waycott ◽  
George Buchanan ◽  
Marthie Grobler ◽  
Shuo Wang

As people move into advanced old age, they may experience cognitive impairments and frailty, making it difficult for them to live without support from others. Caregivers might decide to use aged care monitoring devices (ACMDs) to support older adults under their care. However, these devices raise privacy concerns as they collect and share sensitive data from the older adult’s private life in order to provide monitoring capabilities. This study involved interviewing formal and informal caregivers who used/may use ACMDs to investigate their views on privacy. The study found that although caregivers consider protecting older adults’ privacy important, they may overlook privacy in order to gain benefits from ACMDs. We argue that ACMD developers should simplify privacy terms and conditions so that caregivers can make well-informed decisions when deciding to use the device. They also should consider providing users with flexible privacy settings so that users can decide what data to collect, whom to share it with and when.


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