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.

Interprofessional care in a retirement and assisted living community: the complexity of teamwork.

Teamwork is an aspiration in the delivery of interprofessional care to older adults, but how does it play out in residential settings that combine independent living, assisted living, and skilled nursing care? This study investigated teamwork as an organic part of a retirement and assisted living community immersed in mission-driven care. Drawing on 44 in-depth interviews, 62 meeting observations, and five years of immersion in the setting by the first author, we explored the complex dynamics of teamwork. Our overarching findings showed that co-location aided by physical design and a mission-driven investment in care may not be sufficient to effect teamwork in a complex care environment, and that the organizational context was potentially damaging to teamwork. Our study highlights opportunities to improve teamwork and interprofessional collaboration in organizational settings that combine the provision of health and social care. Increasing expectations for teamwork outcomes may prove essential as retirement and assisted living care settings offer supportive and therapeutic environments for older adults who move between different levels of care.

An evaluation of a sustained senior mentor program for medical students.

Background/Objective Medical student geriatrics education using community-based volunteer older persons, known as a Senior Mentor Program (SMP), began decades ago. Though these programs have been described and evaluated against curriculum objectives, the full breadth of students' learning from SMPs has not been reported. Methods We conducted a qualitative study using content analysis of reflections of Year 2 medical students submitted during a single visit home-based SMP. Written reflections of 102 randomly selected students from 2016-2018 were inductively coded and grouped into themes. Older persons from the SMP site assisted in coding and quotation selection. Results We discerned six themes from the evaluation of student reflections: student insight, interview and exam, social community, challenges with aging, strengths (responses to challenges), and physical infrastructure. Conclusion A single home visit with older adults enables pre-clinical medical students to learn about multiple positive aspects of aging.

Successful Family-Driven Intervention in Elder Family Financial Exploitation: A Case Study.

BACKGROUND AND OBJECTIVES: The prevalence and consequences of elder family financial exploitation reinforce the need for a range of effective intervention strategies. This article describes how and why one family successfully intervened in the family-based financial exploitation, constructing, and achieving meaningful processes and outcomes for the specific family and context. RESEARCH DESIGN AND METHODS: Case data analysis and interpretation were guided by Stake's (2015) systematic phases of case summary (factual information), inductive case themes (issue relevant meanings), and case features (abstractions to the existing knowledge). The case was selected from a larger study examining the meaning and experience of elder family financial exploitation based on the following case boundaries: reliance on family members with minimal private sector support, no report to the authorities, and successful outcomes for the victim, perpetrator, and the family system. RESULTS: The case family successfully resolved family-based financial exploitation by (a) honoring the victim's wishes, (b) providing support and accountability for the perpetrator, (c) restoring family relationships and functioning, and (d) family-driven decision making. A family systems approach and the application of restorative justice principles are identified as overarching case features. DISCUSSION AND IMPLICATIONS: As a study of a previously undocumented experience of successful family involvement, the case findings are useful for researchers and practitioners when constructing and examining the effectiveness of future intervention strategies.

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.

Organizational commitment among residential care workers.

The growth of the older adult population and documented demand of health, allied health, and social care professionals contrast starkly with the reality that the eldercare field, including care organizations, struggle to attract and retain committed workers. Extant studies evaluate organizational capacity to engender commitment by examining various job and workplace factors. Drawing on 44 interviews, observations of 62 meetings, and a 5-year immersion, this organizational ethnography looks at commitment factors at a large, urban, faith-based residential senior care organization. Commitment factors are delineated on three levels such as daily tensions and rewards, value-based tensions and rewards, deal breakers and clinchers. Identity-based factors such as affective bonds with older persons and sharing in faith values sustain commitment on the person level whereas interprofessional tensions may detract from commitment. This study extends the knowledge base by incorporating perspectives of care workers such as social workers, chaplains, rehabilitation, recreational, diet and environmental services workers in addition to the more commonly examined groups such as nurses and certified nursing assistants, and in a setting that includes Assisted Living in addition to long-term care.