Physical pain among family caregivers to older adults: A scoping review of the literature.

BACKGROUND AND OBJECTIVES: Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. METHODS: We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). RESULTS: We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. DISCUSSION: Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.

A Qualitative Study of Home Health Aides' Perspectives towards COVID-19 Vaccination.

Home health aides provide care to homebound older adults and those with chronic conditions. Aides were less likely to receive COVID-19 vaccines when they became available. We examined aides' perspectives towards COVID-19 vaccination. Qualitative interviews were conducted with 56 home health aides at a large not-for-profit home care agency in New York City. Results suggested that aides' vaccination decisions were shaped by (1) information sources, beliefs, their health, and experiences providing care during COVID-19; (2) perceived susceptibility and severity of COVID-19; (3) perceived benefits of vaccination including protection from COVID-19, respect from colleagues and patients, and fulfillment of work-related requirements; (4) perceived barriers to vaccination including concerns about safety, efficacy, and side effects; and (5) cues to action including access to vaccination sites/appointments, vaccination mandates, question and answer sessions from trusted sources, and testimonials. Providing tailored information with support to address vaccination barriers could lead to improved vaccine uptake.

Scanxiety among Adults with Cancer: A Scoping Review to Guide Research and Interventions.

Background: Scan-related anxiety ("scanxiety") is distressing to people living with and beyond cancer. We conducted a scoping review to promote conceptual clarity, identify research practices and gaps, and guide intervention strategies for adults with a current or prior cancer diagnosis. Methods: Following a systematic search, we screened 6820 titles and abstracts, evaluated 152 full-text articles, and selected 36 articles. Definitions, study designs, measurement methods, correlates, and consequences of scanxiety were extracted and summarized. Results: The reviewed articles included individuals living with current cancer (n = 17) and those in the post-treatment phase (n = 19), across a breadth of cancer types and disease stages. In five articles, authors explicitly defined scanxiety. Multiple components of scanxiety were described, including those related to scan procedures (e.g., claustrophobia, physical discomfort) and scan results (e.g., implications for disease status and treatment), suggesting varied intervention approaches may be needed. Twenty-two articles used quantitative methods, nine used qualitative methods, and five used mixed methods. In 17 articles, symptom measures specifically referenced cancer scans; 24 included general measures without reference to scans. Scanxiety tended to be higher among those with lower education levels, less time since diagnosis, and greater baseline anxiety levels (three articles each). Although scanxiety often decreased immediately pre- to post-scan (six articles), participants reported the waiting period between scan and results to be particularly stressful (six articles). Consequences of scanxiety included poorer quality of life and somatic symptoms. Scanxiety promoted follow-up care for some patients yet hindered it for others. Conclusions: Scanxiety is multi-faceted, heightened during the pre-scan and scan-to-results waiting periods, and associated with clinically meaningful outcomes. We discuss how these findings can inform future research directions and intervention approaches.

Hospice interventions for persons living with dementia, family members and clinicians: A systematic review.

BACKGROUND: Hospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies. METHODS: A systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist. RESULTS: The search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and "other" delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing. IMPLICATIONS: Hospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.