Potential sources of moral distress during COVID-19: Perspectives of hospice interdisciplinary teams.

OBJECTIVE: This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. METHODS: A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. RESULTS: The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. SIGNIFICANCE OF RESULTS: This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

"When she goes out, she feels better:" co-designing a Green Activity Program with Hispanic/Latino people living with memory challenges and care partners.

Purpose: Utilizing a participatory approach, we sought to co-design a 12-week Green Activity Program (GAP) with Hispanic/Latino individuals living with memory challenges and their care partners, local outdoor professionals, and healthcare providers. Methods: Participants were recruited via convenience and snowball sampling in the Bronx, New York with Hispanic/Latino persons living with memory challenges and care partners, outdoor activity professionals, and interdisciplinary healthcare providers/dementia experts. Co-design occurred iteratively with 5 focus groups and 4 individual interviews lasting 30-90 min and focused on program and research design. Sessions were recorded and transcribed. Utilizing directed content analysis data was coded using a priori codes program design and research design. Results: 21 participants completed co-design activities: (n = 8 outdoor activity professionals, n = 6 Hispanic/Latino persons living with memory challenges and care partners, and n = 7 interdisciplinary healthcare providers/dementia experts). Participant preferences for program design were captured by subcodes session duration (30-90 min), frequency (4-8 sessions), and delivery modes (in-person and phone). Participants' preferred nature activities included group exercise and outdoor crafts [crocheting], outcomes of social participation, connectedness to nature, decreased loneliness, and stewardship were identified. Preferred language for recruiting and describing the program were "memory challenges," "Hispanic/Latino," and "wellbeing." Referral pathways were identified including community-based organizations and primary care. Conclusion: Co-design was a successful form of engagement for people living with memory challenges that enabled participants to help design key elements of the GAP and research design. Our processes, findings, and recommendations for tailoring co-design to engage Hispanic/Latino people living with memory challenges can inform the development of other programs for this population.

Occupational Therapy Using Zones of Regulation™ Concepts: A Feasibility Study.

There is a lack of peer-reviewed research on occupational therapy using Zones of Regulation™ concepts for autistic youth. The purpose of this article is to describe the feasibility of a newly-developed occupational therapy intervention using Zones of Regulation™ concepts (OT-ZOR) for autistic youth. Specifically, we aimed to evaluate: (a) participant recruitment, retention, and attendance; (b) intervention fidelity, safety, and assessment completion; (c) intervention acceptability; and (d) preliminary participant outcomes. A single-arm feasibility study was completed with outcome measures before and after 10 weeks of OT-ZOR. Fourteen autistic youth ages 6 to 13 completed the study. Youth attended 94% of OT-ZOR sessions. Providers achieved 97% fidelity to the intervention. Occupational therapists and caregivers expressed overall satisfaction with the OT-ZOR intervention. Youth demonstrated significant decreases in irritability, hyperactivity, emotional reactivity, and dysphoria. OT-ZOR is feasible to implement, acceptable to providers and caregivers, and may improve self-regulation in autistic youth.

Occupational Therapy Using Zones of Regulation Concepts: A Feasibility StudyThe research team developed an intervention that combines occupational therapy best practices for autistic youth with concepts from a widely used curriculum for teaching self-regulation skills, the Zones of Regulation™. This article describes the feasibility of implementing this new intervention, named occupational therapy using Zones of Regulation (OT-ZOR). The current feasibility study provided 10 weeks of OT-ZOR to autistic youth ages 6 to 13 and collected data about feasibility of implementing the intervention, acceptability of the intervention to caregivers and providers, and preliminary participant outcomes. OT-ZOR was feasible to implement, as indicated by high rates of retention, attendance, and fidelity to the intervention. OT-ZOR was acceptable to the occupational therapists who provided it, and the caregivers of autistic youth who participated. Youth demonstrated improvements in self-regulation. Overall, we concluded OT-ZOR was feasible to implement, acceptable to providers and caregivers, and may improve self-regulation in autistic youth.

"I Have a Lotta Sad Feelin'" - Unaddressed Mental Health Needs and Self-Support Strategies in Medicaid-Funded Assisted Living.

OBJECTIVE: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). DESIGN: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. SETTING AND PARTICIPANTS: The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. METHODS: Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. RESULTS: Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non-mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). CONCLUSION AND IMPLICATIONS: Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents' desire for autonomy and the unique circumstances of living in M-ALF.

Neuropsychiatric symptoms in people living with dementia receiving home health services.

BACKGROUND: We sought to describe neuropsychiatric symptoms (NPS) among people living with dementia (PLWD) from diverse racial and ethnic groups receiving home health services while accounting for dementia severity, individual symptom prevalence, and neighborhood disadvantage. METHODS: A prospective study using cross-sectional data from n = 192 PLWD receiving skilled home healthcare in New Jersey enrolled in the Dementia Symptom Management at Home Program trial. We prospectively measured symptom prevalence with the Neuropsychiatric Inventory Questionnaire and dementia severity using the Quick Dementia Rating System. A one-way ANOVA determined NPS prevalence by dementia severity (mild, moderate, severe). Fisher's exact tests were used to assess the association of individual symptom prevalence with race and ethnicity and cross tabs to descriptively stratify individual symptom prevalence by dementia severity among groups. A Pearson correlation was performed to determine if a correlation existed among neighborhood disadvantages measured by the Area Deprivation Index (ADI) state decile scores and NPS prevalence and severity. RESULTS: Participants identified as non-Hispanic White (50%), non-Hispanic Black (30%), or Hispanic (13%). NPS were prevalent in 97% of participants who experienced 5.4 ± 2.6 symptoms with increased severity (10.8 ± 6.6) and care partner distress (13.8 ± 10.8). NPS increased with dementia severity (p = 0.004) with the greatest difference seen between individuals with mild dementia (4.3 ± 2.3) versus severe dementia (5.9 ± 2.3; p = 0.002). Few differences were found in symptom prevalence by racial and ethnic sub-groups. Nighttime behaviors were higher in non-Hispanic Black (78%), compared with non-Hispanic Whites (46%) with moderate dementia, p = 0.042. State ADI scores were not correlated with the number of NPS reported, or severity. CONCLUSIONS: NPS were prevalent and increased with dementia severity with commonalities among racial and ethnic groups with varying levels of neighborhood disadvantage. There is a need for effective methods for improving NPS identification, assessment, and management broadly for homebound PLWD.

Feasibility of an adaptive riding pilot study and acceptability to dementia care partners: "Your spirits are lifted".

OBJECTIVES: We sought to assess the feasibility and acceptability of an adaptive riding program with dyads (persons living with dementia, family care partners) and a gardening comparison condition. DESIGN: This is a two-arm (adaptive riding and adaptive gardening), mixed methods, convergent, feasibility study that occurred February 2019-June 2019. INTERVENTIONS: Upon enrollment, dyads (n=9) self-selected into either community-based adaptive riding (n=5) or adaptive gardening (n=4), two complementary interventions in Northern Colorado. Interventions occurred for hour-long, weekly sessions for eight weeks. OUTCOME MEASURES: Feasibility was measured with recruitment (actual/planned, response rate, participants enrolled/month) retention, adherence to study procedures (attendance, retention, fidelity), and data collection processes (planned versus collected); and analyzed with descriptive statistics. Acceptability of adaptive riding was measured with pre/post care partner interviews and analyzed using thematic analysis. Afterwards, findings were converged. RESULTS: We recruited n=10/24 dyads (6 dyads per month), with the highest response rates for referrals and in-person events, n=9 dyads enrolled. We adhered to study procedures with attendance (6/8 gardening, 8/8 riding), retention (100%), fidelity (100%) and data collected (98%). Care partners (n=5) found the adaptive riding intervention acceptable with two themes Overall hopes: "Joy in the present moment" and "Experience as a Whole: "Your spirits are lifted," affirming quantitative attendance and retention data. CONCLUSION: Findings underscore the feasibility and acceptability of including care partners of persons living with dementia in complementary interventions involving horsemanship activities. Feasibility data can guide study designs and implementation processes for other nature-based complementary interventions for this population.

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.