Daniel David

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Objectives: As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. Method: For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. Results: Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. Conclusions: WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. Trial Registration: ClinicalTrials.gov HIC 2000021852.

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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.

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Context: Evaluation of usability and mobile health content is critical for ensuring effective implementation of technology utilizing interventions tailored to the needs of hospice care providers for people living with dementia in community-based settings. Objectives: To evaluate the usability, content, and “readiness to launch” of the Aliviado mobile health app for interdisciplinary team members participating in the Hospice Advanced Dementia Symptom Management and Quality of Life. Methods: Usability of the Aliviado app was assessed in 86 respondents with an adapted IBM Computer Usability Satisfaction Questionnaire following Hospice Advanced Dementia Symptom Management and Quality of Life training and implementation of the mobile app. Results: More than half of users receiving training employed the mobile app in practice. Users reported use as: Daily-6.3%, Weekly-39.6%, monthly-54.2%. The highest measured attributes were usefulness, value, and effectiveness. Over 90% deemed the app “ready to launch” with no or minimal problems. Conclusion: This study shows that a newly-developed mobile app is usable and can be successfully adopted for care of people living with dementia.

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Background: Over two-Thirds of nursing home (NH) residents are eligible for palliative care (PC), yet few receive it, particularly outside of hospice. Little is known about the technical feasibility and acceptability of using telehealth for PC consultations in NHs. Objective: To determine the technical feasibility and acceptability of PC telehealth for NH residents seen by a PC team in the hospital in the previous 30 days. Design: Mixed methods study including data collection from field observations, focus groups about the telehealth experience with content analysis, and a web-based survey about technical feasibility and acceptability. Sample and Approach: Eighteen participants (six PC-eligible NH residents, one PC physician, five family members, six NH nurses) were recruited in 2016 to participate in one of six PC video visits followed by a video-based focus group and web-based survey. Results: All participants were comfortable with the PC video visit format, believed it could improve communication and care coordination, and reported they could see themselves using telehealth in the near future. For technical feasibility, audio quality was rated mostly good/very good (71%) and visual quality was rated fair (50%). Conclusions: PC video visits are technically feasible and acceptable to NH residents, families, and staff, representing an innovative and relatively low-cost opportunity to improve access to needed NH-based PC services. Assessing stakeholder perspectives on the use of this technology can help inform the selection of the proper telehealth platform to meet the clinical and infrastructure needs, as well as protocol modifications required before testing in a larger trial.