scholarly journals Recruitment and retention strategies to improve inclusion of family caregivers of African American older adults with dementia in advance care planning research

2020 ◽  
Vol 16 (S7) ◽  
Author(s):  
Abigail M Grieff ◽  
Karen Moss ◽  
Laurel Myers Hurst ◽  
Celia Wills
Keyword(s):  
Older Adults ◽  
African American ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Retention Strategies ◽  
Recruitment And Retention ◽  
Advance Care ◽  
African American Older Adults

scholarly journals FAMILY CAREGIVERS’ ADVANCE CARE PLANNING FOR COGNITIVELY IMPAIRED OLDER ADULTS: SERVICE PROVIDERS’ PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S237-S237
Author(s):  
Hyunjin Noh ◽  
Temilade A Aladeokin
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Cognitively Impaired ◽  
Care Planning ◽  
Barriers To Access ◽  
Advance Care ◽  
Surrogate Decision

Abstract An increasing number of family caregivers face challenges of advance care planning (ACP) for their cognitively impaired older adults. The purpose of this study was to understand service providers’ views of ACP knowledge and needs among such family caregivers. Purposive sampling was used to recruit 10 service providers who serve older adults and their family caregivers in community settings of West Alabama. Individual, face-to-face interviews were conducted guided by a semi-structured questionnaire, asking about their experiences with and views of family caregivers’ ACP for their older adults. Thematic analysis of the qualitative data revealed several findings: family caregivers’ lack of knowledge about ACP and end-of-life care, discomfort in end-of-life discussions, uncertainty about their older adult’s end-of-life preferences, frustration with the surrogate decision-making role, family conflicts in ACP process, and logistical barriers to access ACP resources. Tailored services should be developed to address these barriers to promote ACP among this population.

scholarly journals Association Between Advance Care Planning for Older Adults and Family Caregivers’ Sense of Security

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 356-357
Author(s):  
Masumi Shinohara ◽  
Mariko Sakka ◽  
Asa Inagaki ◽  
Taisuke Yasaka ◽  
Chie Fukui ◽  
...  
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Adult Children ◽  
Interactive Effect ◽  
Adult Child ◽  
Care Planning ◽  
Positive Effects ◽  
Sense Of Security ◽  
Advance Care

Abstract Family caregivers’ (FCs’) sense of security benefits older adults who receive homecare. Advance care planning (ACP) is reported to have positive effects on FC’s experience, but it might differ depending on FCs’ kin relationships with the older adults. We examined whether ACP for older adults in homecare settings is associated with FCs’ sense of security. Further, we assessed whether such an association depends on their status as spouses or as adult children. We conducted a secondary analysis of data from a prospective cohort study in Japan. The participants were older adults who used home-visit nursing services, their FCs, and the nurses who cared for them. The FCs were asked to answer a sense of security questionnaire, and nurses were asked whether ACP was conducted. Multivariate logistic regression analyses were performed to examine the association between ACP implementation and positive changes in the sense of security scores after three months. Data from 169 cases were analyzed. Of the FCs, 28.1% were men and 55.6% were spouses. ACP was performed in 53.8% of the cases. The results of the multivariate analyses showed an interactive effect between ACP implementation and FC kin relationships. For spouses, ACP was significantly associated with a positive change in their sense of security. For adult children, such an association was not found. ACP might have a positive effect on caregiving spouses’ sense of security. Adult child caregivers, who often have multiple responsibilities and have difficulties facing their parents’ physical decline, may need support, in addition to ACP.

scholarly journals Experienced Family Caregiver Perspectives on Advance Care Planning for African Americans Living With Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 241-241
Author(s):  
Kathy Wright ◽  
Laurel Myers Hurst ◽  
Abigail Grieff ◽  
Karen Rose ◽  
Todd Monroe ◽  
...  
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Family Caregiver ◽  
Healthcare Providers ◽  
Intervention Development ◽  
Cross Sectional Study ◽  
Care Planning ◽  
Cross Sectional ◽  
Advance Care

Abstract Most existing advance care planning (ACP) programs do not meet the needs of lower socioeconomic status (SES) African American (AA) older adults living with dementia. The perspectives of experienced family caregivers are integral to achieving appropriate ACP tailoring. The purpose of this study is to describe experienced family caregiver perceptions about needs and preferences for tailoring ACP for family caregivers of lower SES AA older adults living with dementia. This qualitative, descriptive, cross-sectional study is embedded within a larger community-based participatory study aimed at intervention development. Caregivers are completing up to two interviews. Preliminary data describes themes involving Caregiver Stress and suggestions for Service Improvements addressing grief and loss pre- and post-death. Caregiver findings and other stakeholder data from healthcare providers and community leaders will guide the design of a “new normal” enhanced, preference-consistent ACP intervention to improve end-of-life care during a global pandemic that is amplifying pre-existing healthcare disparities.

scholarly journals Engagement in Advance Care Planning: The Association With Cognitive Impairment and Care Preferences

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-418
Author(s):  
Hyo Jung Lee ◽  
Giyeon Kim
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Relative Risk ◽  
End Of Life ◽  
Advance Care Planning ◽  
Multinomial Logistic Regression ◽  
Quality Care ◽  
Care Planning ◽  
Advance Care ◽  
Four Levels

Abstract Although there has been growing evidence that Advance care planning (ACP) benefits people with cognitive impairment nearing death, our understanding about this issue is still limited. This study examines whether cognitive impairment is associated with ACP engagement and end-of-life care preferences among older adults in the U.S. Using data from the 2012 National Health and Trends Study (n=1798, aged 65 to 101), we identified four levels of ACP engagement: None (28%), Informal ACP conversation only (12%), Formal ACP only (14%), and Both informal and formal ACP (46%). Older adults with None showed the highest prevalence of having cognitive impairment (17%), followed by those with Formal ACP only (15%) and the other two (6%, 6%). The results of Multinomial Logistic Regression showed that, compared to those without, respondents with cognitive impairment had 143% increased relative risk of having None (RR = 2.43, CI: 1.58-3.73) and 81% increased relative risk of completing Formal ACP only (RR = 1.81, CI: 1.11-2.95) relative to completing Both informal and formal ACP. In addition, respondents with None were more likely to prefer to receive all treatments available nearing death than those with any ACP engagement. Achieving high quality care at the end of life can be more challenging for older adults with cognitive impairment and their family caregivers due to the limited capacity. Although encouraged, informal ACP conversation with loved ones does not necessarily occur before the formal ACP, especially, for those with cognitive impairment. Therefore, they may merit more attention such as early ACP engagement.

scholarly journals The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Cancers ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 1977
Author(s):  
Francesca Falzarano ◽  
Holly G. Prigerson ◽  
Paul K. Maciejewski
Keyword(s):  
Cancer Patients ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Prospective Longitudinal Study ◽  
Advance Care ◽  
Grief Resolution ◽  
Caregiver Grief ◽  
Prospective Longitudinal

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

scholarly journals The Challenges of Recruiting and Retaining Dyads of Hospitalized Persons With Dementia and Their Family Carers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 758-758
Author(s):  
Marie Boltz ◽  
Ashley Kuzmik
Keyword(s):  
Older Adults ◽  
Clinical Trial ◽  
Family Caregivers ◽  
Hospital Environment ◽  
Family Carers ◽  
Retention Strategies ◽  
Recruitment And Retention ◽  
Team Meetings ◽  
Partnership Model ◽  
Cluster Randomized

Abstract Persons with dementia (PWD) have high rates of hospitalization, and along with their family caregivers (FCGs), commonly experience negative hospital experiences and outcomes. The recruitment and retention challenges encountered in an ongoing cluster randomized clinical trial in PWDs and FCGs are described. The trial tests the efficacy of a nurse-FCG partnership model that aims to improve: 1) the physical and cognitive recovery in hospitalized PWD, and 2) FCG preparedness and anxiety. Recruitment and retention challenges, identified in team meetings and extracted from team documentation,.include factors in the hospital environment, the PWD, and FCGs. Strategies that address these challenges include careful pre-planning and preparation with the site, strong communication with dyads, and honoring preferences for communication. The recruitment and retention of acutely ill older adults with dementia and FCGs can pose a challenge to investigators and threaten the validity of findings. Recruitment and retention strategies that help improve validity are described

The PREPARE for Your Care program increases advance care planning engagement among diverse older adults with cancer

Cancer ◽  
2021 ◽  
Author(s):  
Sarah S. Nouri ◽  
Deborah E. Barnes ◽  
Ying Shi ◽  
Aiesha M. Volow ◽  
Nikita Shirsat ◽  
...  
Keyword(s):  
Older Adults ◽  
Advance Care Planning ◽  
Care Program ◽  
Care Planning ◽  
Advance Care
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