Needs of persons living with ALS at home and their family caregivers: A scoping review.

INTRODUCTION/AIMS: Most persons with amyotrophic lateral sclerosis (ALS) live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes. METHODS: This scoping review identifies the home health/home care needs of persons with ALS and their caregivers as a basis for creating a home health medical standard. We used the PRISMA Extension for Scoping Reviews (PRISMA-ScR) to examine studies describing home care needs published between 2011 and 2021. RESULTS: Our search yielded 481 articles, of which 44 were included with a total of 3592 (9-273) participants. Most studies used a cross-sectional design and 20 (45%) were rated as high quality. We grouped the needs identified as emotional/psychological, assistive devices and technology, information and education, and human resources and professional services. Most studies demonstrated persistent unmet needs and that available interventions were helpful while needs generally were not met proactively, despite the predictable trajectory. DISCUSSION: This review describes biopsychosocial and equipment interventions over the trajectory of ALS with implications for anticipatory planning by clinicians, as well as policy for coverage of necessary services and supports. Interdisciplinary expert teams could develop consensus around needs across the trajectory and recommended services and supports. To make knowledge more accessible, encourage availability of services, and clarify the need for coverage of services, we aim to develop an expert consensus-based ALS home health medical standard guidance document in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine.

Diverse demands and resources among racially/ethnically diverse caregivers.

OBJECTIVES: The family caregiver population in the US is growing in conjunction with greater numbers of older adults with serious illness and complex care needs, and is becoming increasingly diverse. This study described and compared resources, demands, and health outcomes among diverse family caregivers by race/ethnicity. DESIGN: This study was a cross-sectional secondary analysis of nationally representative data collected for Black/African-American, Asian American & Pacific Islander, Latino/Hispanic and non-Latino/Hispanic white caregivers (n = 2,010) in the Home Alone Revisited Study. We described available resources (e.g. income, paid help, social support) and demands (e.g. medical/nursing task performance) by racial/ethnic group. Using survey-weighted logistic regression, we examined relationships of resources and demands with caregiver outcomes (i.e. heath status; strain; depressive symptoms) by race-ethnicity controlling for socio-demographic variables. RESULTS: Distribution of resources and demands was similar by race/ethnicity, except for higher income for non-Latino/Hispanic white caregivers. Nearly half assisted with personal care (47.5%) or medical/nursing tasks (49.7%). Higher social support and satisfaction with social relationships was associated with positive health outcomes regardless of race/ethnicity, while income was consistently associated with positive health outcomes only for non-Latino/Hispanic white caregivers. Medical/nursing task performance was significantly associated with negative health outcomes for Asian American & Pacific Islanders in multivariable models. DISCUSSION: Many caregiving demands and tasks are similar by race/ethnicity and represent considerable investment of time, energy and care. Differences in the effects of resources and demands by race/ethnicity should be explored in future research as they may have implications for assessment and planning of culturally and linguistically appropriate interventions.

Implementation of a Statewide Web-Based Caregiver Resource Information System (CareNav): Mixed Methods Study.

BACKGROUND: With the aging population, family caregivers provide increasingly complex and intense care for older adults and persons with disabilities. There is growing interest in developing community-based services to support family caregivers. Caregiving occurs around the clock, and caregivers face challenges in accessing community-based services at convenient times owing to the demands of care. Web-based resources hold promise for accessible real-time support. CareNav (TM), a caregiver resource information system, is a web-based platform designed to support real-time universal caregiver assessment, a record of client encounters, development of a care plan, tailored information and resource content, access to web-based caregiver resources, the capacity to track service authorization and contracts, and secure communications. The assessment includes needs and health conditions of both the care recipient and caregiver; current resources; and priorities for support, information, and referral. In 2019, the California Department of Health Care Services funded the 11 nonprofit California Caregiver Resource Centers (CRCs) to expand and improve family caregiver services and enhance CRC information technology services. Deployment of a statewide information system offered a unique opportunity to examine structures and processes facilitating implementation, providing feedback to the sites as well as lessons learned for similar projects in the future. OBJECTIVE: The aim of this paper was to describe the statewide implementation of the comprehensive CareNav system using the Consolidated Framework for Implementation Research as an organizing structure for synthesizing the evaluation. METHODS: This mixed methods study used two major approaches to evaluate the implementation process: a survey of all staff who completed training (n=82) and in-depth qualitative interviews with 11 CRC teams and 3 key informants (n=35). We initially analyzed interview transcripts using qualitative descriptive methods and then identified subthemes and relationships among ideas, mapping the findings to the Consolidated Framework for Implementation Research. RESULTS: We present findings on the outer setting, inner setting, characteristics of the intervention, characteristics of the staff, and the implementation process. The critical elements for success were leadership, communication, harmonization of processes across sites, and motivation to serve clients in more accessible and convenient ways. CONCLUSIONS: These findings have implications for technology deployment in diverse community-based agencies that aspire to enhance web-based services.