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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs.

ABSTRACT: BACKGROUND/OBJECTIVES:People with dementia (PwD) frequently use emergency care services. To mitigate the disproportionately high rate of emergency care use by PwD, an understanding of contributing factors driving reliance on emergency care services and identification of feasible alternatives are needed. This study aimed to identify clinician, caregiver, and service providers' views and experiences of unmet needs leading to emergency care use among community-dwelling PwD and alternative ways of addressing these needs. DESIGN:Qualitative, employing semistructured interviews with clinicians, informal caregivers, and aging service providers. SETTING:Wisconsin, United States. PARTICIPANTS:Informal caregivers of PwD (n = 4), emergency medicine physicians (n = 4), primary care physicians (n = 5), geriatric healthcare providers (n = 5), aging service providers (n = 6), and community paramedics (n = 3). MEASUREMENTS:Demographic characteristics of participants and data from semistructured interviews. FINDINGS:Four major themes were identified from interviews: (1) system fragmentation influences emergency care use by PwD, (2) informational, decision-making, and social support needs influence emergency care use by PwD, (3) emergency departments (EDs) are not designed to optimally address PwD and caregiver needs, and (4) options to prevent and address emergency care needs of PwD. CONCLUSION:Participants identified numerous system and individual-level unmet needs and offered many recommendations to prevent or improve ED use by PwD. These novel findings, aggregating the perspectives of multiple dementia-care stakeholder groups, serve as the first step to developing interventions that prevent the need for emergency care or deliver tailored emergency care services to this vulnerable population through new approaches. J Am Geriatr Soc 67:711-718, 2019.

SUBMITTER: Jacobsohn GC

PROVIDER: S-EPMC6458085 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs.

Jacobsohn Gwen Costa GC Hollander Matthew M Beck Aaron P AP Gilmore-Bykovskyi Andrea A Werner Nicole N Shah Manish N MN

Journal of the American Geriatrics Society 20190109 4

<h4>Background/objectives</h4>People with dementia (PwD) frequently use emergency care services. To mitigate the disproportionately high rate of emergency care use by PwD, an understanding of contributing factors driving reliance on emergency care services and identification of feasible alternatives are needed. This study aimed to identify clinician, caregiver, and service providers' views and experiences of unmet needs leading to emergency care use among community-dwelling PwD and alternative w ...[more]

PMID: 30624765

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Project description:ImportancePatients with cancer experience multiple supportive care needs (eg, coping and financial counseling) that, if not addressed, may result in poor clinical outcomes. Limited work has assessed the factors associated with unmet needs in large and diverse samples of ambulatory oncology patients.ObjectiveTo characterize the factors associated with unmet supportive care needs among ambulatory oncology patients and to assess whether such needs were associated with emergency department (ED) visits and hospitalizations.Design, setting, and participantsBetween October 1, 2019, and June 30, 2022, cross-sectional retrospective analyses were performed in a large and diverse ambulatory cancer population via My Wellness Check, an electronic health record (EHR)-based supportive care needs and patient-reported outcomes (PROs) screening and referral program.Main outcomes and measuresDemographic characteristics, clinical characteristics, and clinical outcomes were extracted from EHRs. Data on PROs (ie, anxiety, depression, fatigue, pain, and physical function), health-related quality of life (HRQOL), and supportive care needs were also collected. Logistic regressions examined factors associated with unmet needs. Cumulative incidence of ED visits and hospitalizations were assessed by Cox proportional hazards regression models adjusting for covariates.ResultsThe 5236 patients in the study had a mean (SD) age of 62.6 (13.1) years and included 2949 women (56.3%), 2506 Hispanic or Latino patients (47.9%), and 4618 White patients (88.2%); 1370 patients (26.2%) indicated Spanish as their preferred language, according to their EHR. A total of 940 patients (18.0%) reported 1 or more unmet needs. Black race (adjusted odds ratio [AOR], 1.97 [95% CI, 1.49-2.60]), Hispanic ethnicity (AOR, 1.31 [95% CI, 1.10-1.55]), 1 to 5 years after diagnosis (AOR, 0.64 [95% CI, 0.54-0.77]), more than 5 years after diagnosis (AOR, 0.60 [95% CI, 0.48-0.76]), anxiety (AOR, 2.25 [95% CI, 1.71-2.95]), depression (AOR, 2.07 [95% CI, 1.58-2.70]), poor physical function (AOR, 1.38 [95% CI, 1.07-1.79]), and low HRQOL scores (AOR, 1.89 [95% CI, 1.50-2.39]) were associated with greater unmet needs. Patients with unmet needs had a significantly higher risk of ED visits (adjusted hazard ratio [AHR], 1.45 [95% CI, 1.20-1.74]) and hospitalizations (AHR, 1.36 [95% CI, 1.13-1.63]) relative to patients without unmet needs.Conclusions and relevanceIn this cohort study of ambulatory oncology patients, unmet supportive care needs were associated with worse clinical outcomes. Patients from racial and ethnic minority groups and those with greater emotional or physical burden were more likely to have 1 or more unmet needs. Results suggest that addressing unmet supportive care needs may be crucial for improving clinical outcomes, and targeted efforts should focus on specific populations.

Project description:BackgroundThe role of palliative care for end-stage renal disease (ESRD) patients have been proven in some developed countries, but it is still unclear in the mainland of China. In fact, patients with ESRD experience many unmet palliative care needs, such as physical, psychological, social and spiritual needs, but the factors influencing these needs have not investigated.MethodsA cross-sectional study was conducted at two hemodialysis centers in the mainland of China from January to September 2022. Convenience sampling was used to collect data on the participants' socio-demographics, clinical characteristics, the Palliative Care Outcome Scale (POS), the Dialysis Symptom Index (DSI), the Karnofsky Performance Status Scale (KPS), the Patient Health Questionnaire-9 item (PHQ-9), and the Social Support Rate Scale (SSRS). Data were analyzed using latent profile analysis, Kruskal-Wallis test, one-way analysis of variance (ANOVA), the chi-square test and multinomial logistic regression analysis.ResultsThree hundred five participants were included in this study, and divided palliative care needs into three categories: Class 1, mild palliative care needs (n = 154, 50.5%); Class 2, moderate palliative care needs (n = 89, 29.2%); Class 3, severe palliative care needs (n = 62, 20.3%). Based on the analysis of three profiles, the influencing factors of unmet needs were further analyzed. Compared with Class 3, senior high school education, the household per capita monthly income < 2,000, low KPS scores, high PHQ-9 scores, and low SSRS scores were less likely to be in Class 1 (OR = 0.03, P = 0.012; OR = 0.003, P < 0.001; OR = 1.15, P < 0.001; OR = 0.55, P < 0.001; OR = 1.35, P = 0.002; respectively) and Class 2 (OR = 0.03, P = 0.007; OR = 0.05, P = 0.011; OR = 1.10, P = 0.001; OR = 0.60, P = 0.001; OR = 1.32, P = 0.003; respectively), and high symptom severity were less likely to be in Class 1 (OR = 0.82, P = 0.001). Moreover, compared with Class 1, the household per capita monthly income < 2,000 (OR = 16.41, P < 0.001), high symptom severity scores (OR = 1.12, P = 0.002) and low KPS scores (OR = 0.95, P = 0.002) were more likely to be in Class 2.ConclusionsThis study showed that almost half of ESRD patients receiving MHD presented moderate to severe palliative care needs, and the unmet needs were mainly affected by education level, financial pressure, functional status, symptom burden and social support. In the future, it is important to identify the populations with the greatest need for palliative care and consider the influencing factors of unmet needs from a comprehensive perspective, so as to help them improve health-related quality of life.

Project description:BackgroundMeaningful engagement has been described as active participation based on a person's interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia continue to need and benefit from inclusion and social contact in LTC, yet there is not a well-developed understanding of how to support this. A tailored intervention called Namaste Care has been shown to be an effective approach to meaningfully engage residents in LTC, decrease behavioral symptoms, and improve their comfort and quality of life. There is a need to consider how best to deliver this intervention.ObjectiveThe aim of this study was to describe environmental, social, and sensory factors influencing meaningful engagement of persons with advanced dementia during Namaste Care implementation in LTC.MethodsIn this qualitative descriptive study, focus groups and interviews were conducted with families, volunteers, staff, and managers at two LTC homes. Directed content analysis was conducted. The Comprehensive Process Model of Engagement was used as a coding framework.ResultsWith respect to environmental attributes, participants emphasized that a designated quiet space and a small group format were helpful for engagement. In terms of social attributes, participants emphasized Namaste Care staff capacity to deliver individualized care. Regarding sensorial factors, familiarity with the activities delivered in the program was emphasized.ConclusionFindings reveal the need to offer small group programs that include adapted recreational and stimulating activities, such as Namaste Care, for residents at the end of life in LTC. Such programs facilitate meaningful engagement for persons with dementia as they focus on individual preferences, comfort, and inclusion while recognizing changing needs and abilities of residents.

Project description:BackgroundChildren and adolescents with special health care needs (SHCN) have higher unmet dental needs, but the potential mechanisms by which parental factors can influence dental care use have not been determined. Parenting a child with SHCN can present special demands that affect parents' well-being and, in turn, their caregiving. Hence, the study's overall aim was to apply the stress process model to examine the role of parental psychosocial factors in the association between child SHCN and dental care. Specifically, the study tested hypotheses regarding how (a) children's SHCN status is associated with child dental care (unmet dental needs and lack of preventive dental visits), both directly and indirectly via parental psychosocial factors (parenting stress, instrumental, and emotional social support) and (b) parental social support buffers the association between parenting stress and child dental care.MethodsA secondary data analysis of the 2011-2012 US National Survey of Children's Health was performed for 6- to 11-year-old children (n = 27,874) and 12- to 17-year-old adolescents (n = 31,328). Our age-stratified models estimated associations between child SHCN status and parental psychosocial factors with two child dental care outcomes: parent-reported unmet child dental needs and lack of preventive dental care.ResultsParents of children with (vs without) SHCN reported higher unmet child dental needs, higher parenting stress, and lower social support (instrumental and emotional). Instrumental, but not emotional, parental support was associated with lower odds of their child unmet dental needs in both age groups. The association between parenting stress and child dental care outcomes was modified by parental social support.ConclusionDifferences existed in child unmet dental needs based on SHCN status, even after adjusting for parental psychosocial factors. SHCN status was indirectly associated with unmet dental needs via parental instrumental support among adolescents, and parental instrumental support buffered the negative association between parenting stress and both child dental care outcomes. Hence, parental social support was an important determinant of child dental care and partially explained the dental care disparities in adolescents with SHCN.

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs.

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs.

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