scholarly journals Feasibility of the ACTPlan Program for African American Dementia Caregivers: A Self-Directed Multimedia Delivery

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Yashika Watkins ◽  
William Collinge ◽  
Alysha Hart ◽  
Rita Tharpe ◽  
Neelum Aggarwal ◽  
...  

Abstract African Americans (AA) are less likely than White Americans to complete advance care plans or end-of-life treatment documents. They face significantly greater risk of Alzheimer’s Disease, a silent epidemic for this population, and other dementias. The healthcare system’s lack of dementia support for AAs contributes to disparate care. A four-session caregiver group education program was conducted on advance care planning for AA dementia family providers. The program was based on Kolb’s Experiential Learning Model and initially found effective in an R01 study using in-person delivery by a professional. The present pilot assessed feasibility of delivering the program in a self-directed multimedia format without professional facilitation, using Session 1 on tube feeding decisions as the test session. Twenty-six AA dementia caregivers completed the session in groups of 5 to 8 at a church equipped with a large TV screen. On-screen prompts guided navigation through the program which included recorded lecture, slides, short videos on decision-making, and group discussions. Using quantitative and qualitative methods, pre-and post-survey instruments were administered and interviews conducted. Usability ratings averaged 84%. Knowledge and self-efficacy gains exceeded those of the R01, with a 35% increase in correct responses on knowledge items, versus 18% for the R01 subjects; and increase in perceived decisional self-efficacy of 31% versus 30% for the R01 subjects. Qualitative feedback was universally positive. These findings confirm the feasibility of the self-guided multimedia approach to delivery of the program. A large RCT is planned which, if successful, will support wide dissemination to AA caregivers in need.

2021 ◽  
pp. 096973302199418
Author(s):  
Gilissen Joni ◽  
Wendrich-van Dael Annelien ◽  
Gastmans Chris ◽  
Vander Stichele Robert ◽  
Deliens Luc ◽  
...  

Background A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73–9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29–5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0–1); 95% confidence interval 0.08–0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03–0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage.


2017 ◽  
Author(s):  
Kristin R. Baughman ◽  
Ruth Ludwick ◽  
Rebecca Fischbein ◽  
Kenelm McCormick ◽  
James Meeker ◽  
...  

Author(s):  
Nazli Gurdamar-Okutur ◽  
Simona Botti ◽  
Vicki G. Morwitz
Keyword(s):  

2019 ◽  
Vol 26 (1) ◽  
Author(s):  
Yasser Abd El Razek ◽  
Walaa Sabry ◽  
Heba Hendawy ◽  
Dalia Hegazy ◽  
Marwa Soultan ◽  
...  

Abstract Background A strong relationship between dementia caregiving and negative consequences on psychological health of caregivers has been established in numerous studies. A meticulous evaluation of caregiver mental status function is of utmost importance to gain better insight into daily caregiver functioning and to alleviate their high levels of burden. This study evaluated the prevalence of psychiatric morbidities and their sociodemographic and clinical correlates among a sample of dementia caregivers in Egypt. Twenty-five caregivers of patients with dementia were collected and compared with regard to their psychiatric morbidity with 25 careers of patients with chronic physical diseases. Patients were subjected to Mini-Mental State Examination (MMSE) and Arabic versions of activities of daily living (ADL) and instrumental activities of daily living (IADL), and caregivers were interviewed using the Arabic version of the General Health Questionnaire (GHQ), Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I), and Zarit Burden Interview (ZBI). Results Caregiver’s burden was significantly higher among the dementia caregiver group than the non-dementia group. Moreover, dementia caregivers provided more aid with a higher total of ADLs and provided help for more IADLs than did the non-dementia caregivers. They also showed higher psychiatric morbidity. Such morbidity was found to be related to hours of caring, years of caring, GHQ, ZBI, ADL/IADL, BPSD, and MMSE. On the other hand, ADL, IADL, and GHQ scores had the highest predictive significance of caregiver’s burden in our study. Conclusions Caregivers of patients with dementia are subjected to more burden and vulnerability to psychiatric disorders than the other caregiver group. That should raise a flag to pay extra support and care for those people, which in turn will benefit both the patient and the health care authorities in terms of quality and cost of the care provided.


2010 ◽  
Vol 35 (12) ◽  
pp. 38-42 ◽  
Author(s):  
Teresa F. Westenhaver ◽  
Teresa J. Krassa ◽  
Gloria J. Bonner ◽  
Diana J. Wilkie

2019 ◽  
pp. bmjspcare-2019-001917
Author(s):  
Lisa Vaccaro ◽  
Phyllis N Butow ◽  
Deborah Lee ◽  
Stephanie B Johnson ◽  
Melanie Bell ◽  
...  

ObjectivesAssessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention.MethodsWe developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial.ResultsFidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met.ConclusionsFidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier.Trial registration numberACTRN12613001288718.


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