Factors Influencing Barriers and Facilitators to In-home Video Telehealth for Dementia Management.

OBJECTIVES: Quality dementia care, which recognizes caregivers as vital care partners, is a scarce resource. Innovative solutions like video telehealth may increase the reach of extant clinicians; however, little is known about perceived barriers and facilitators to in-home video telehealth for dementia management from the perspectives of caregivers. METHODS: Twenty-four caregivers of community-dwelling Veterans with dementia participated in semi-structured interviews. Questions gathered perceived facilitators and barriers to in-home video telehealth for dementia management through experience with related technology. Transcripts were analyzed using directed content analysis which was guided by factors previously identified as influencing older adults' adoption of technology. RESULTS: Caregiver experience with related technology was mostly facilitative to video telehealth, which was thought best suited for follow-up care. Increased access and decreased patient-caregiver stress were potential benefits. Barriers included perceived limitations of video and the belief that persons with dementia would have limited ability to manage technological aspects and to engage in video telehealth on their own. CONCLUSIONS: This study improves our understanding of the factors that caregivers perceive as barriers and facilitators to in-home video telehealth for dementia management. CLINICAL IMPLICATIONS: Strategies to optimize video telehealth include capitalizing on caregivers' social network and providing targeted training.

Stigma as a key determinant of health-related quality of life in Parkinson's disease.

PURPOSE: People with Parkinson's disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics. METHODS: This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson's Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M age = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living. RESULTS: Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001). CONCLUSIONS: Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.

Emergence and evolution of social self-management of Parkinson's disease: study protocol for a 3-year prospective cohort study.

BACKGROUND: Parkinson's disease affects facial, vocal and trunk muscles. As symptoms progress, facial expression becomes masked, limiting the person's ability to communicate emotions and intentions to others. As people with the disease live and reside in their homes longer, the burden of caregiving is unmitigated by social and emotional rewards provided by an expressive individual. Little is known about how adults living with Parkinson's disease manage their social lives and how an inability to be emotionally expressive can affect social connections and health. Because social networks have been shown to be crucial to the overall well-being of people living with chronic diseases, research is needed on how expressive capacity affects life trajectories and health. METHODS/DESIGN: The overall objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes. The specific aims of this 3-year longitudinal study of 120 people with the disease and a maximum of 120 care partners are: 1) characterize social self-management trajectories over a 3-year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management. Each participant will be assessed 14 times to detect rapid and non-linear changes in social participation and management of social activities; social network; and social comfort, general health and well-being. DISCUSSION: This project will provide evidence to guide the development of interventions for supporting social integration of those living with Parkinson's disease, thus leading to improved overall health. It focuses on the novel construct of social self-management and known factors-expressive capacity and gender-that contribute to stigmatization. The repeated measures design detects triggers of rapid changes in social and health outcomes.

Parent strategies for addressing the needs of their newly adopted child.

The purpose of this study was to describe reflections of nine American parents on the strengths, challenges, and strategies in parenting young children newly adopted from another country. Eight mothers and one father with an adopted child aged <3 years and home for <3 months completed standardized assessments measuring the child's social emotional development, sensory processing, and parental stress. Each parent participated in qualitative interview to discuss challenges and strategies helpful in addressing their children's needs. All parents reported challenges addressing their child's needs in the areas of sleep, feeding, attachment and self-regulation, and soothing. Parents reported similar strategies to address their child's behavioral concerns. Parents also reported on family factors and community resources that supported the success of the adoption. Although many families described their adoptive child as having challenges with multiple daily life activities, parents reported being able to create effective strategies to address many of these challenging behaviors.

Occupational therapy fieldwork educators: Examining professional quality of life.

BACKGROUND: Occupational therapy practitioners with the simultaneous working role of fieldwork educator support the growth of the profession by supervising students, but little is known about their reported burnout, compassion fatigue, and compassion satisfaction levels, and if specific work characteristics predict those levels. OBJECTIVE: The purpose of this research was to: 1) assess the current levels of compassion fatigue, compassion satisfaction, and burnout in occupational therapy fieldwork educators through The Professional Quality of Life Scale (ProQOL), and 2) to explore how professional characteristic variables correlate and predict the measured constructs of compassion fatigue, burnout, and compassion satisfaction. METHODS: A cross-sectional design was used, and participants were recruited from a convenience sample to complete the ProQOL and a work characteristic questionnaire. RESULTS: On the average, 117 fieldwork educators scored higher on the subscale of compassion satisfaction when compared to those of the normed group. Linear regression analyses revealed that a higher number of roles and greater years working predicted higher compassion satisfaction. CONCLUSIONS: This study contributes to understanding the experiences of fieldwork educators in multiple roles, their reported levels of compassion fatigue, compassion satisfaction, and burnout, and the potential for development of personal, educational and organizational resources to support professional quality of life indicators within the role of fieldwork educator.

Using topic modeling to infer the emotional state of people living with Parkinson's disease.

Individuals with Parkinson's disease (PD) often exhibit facial masking (hypomimia), which causes reduced facial expressiveness. This can make it difficult for those who interact with the person to correctly read their emotional state and can lead to problematic social and therapeutic interactions. In this article, we develop a probabilistic model for an assistive device, which can automatically infer the emotional state of a person with PD using the topics that arise during the course of a conversation. We envision that the model can be situated in a device that could monitor the emotional content of the interaction between the caregiver and a person living with PD, providing feedback to the caregiver in order to correct their immediate and perhaps incorrect impressions arising from a reliance on facial expressions. We compare and contrast two approaches: using the Latent Dirichlet Allocation (LDA) generative model as the basis for an unsupervised learning tool, and using a human-crafted sentiment analysis tool, the Linguistic Inquiry and Word Count (LIWC). We evaluated both approaches using standard machine learning performance metrics such as precision, recall, and F1scores. Our performance analysis of the two approaches suggests that LDA is a suitable classifier when the word count in a document is approximately that of the average sentence, i.e., 13 words. In that case, the LDA model correctly predicts the interview category 86% of the time and LIWC correctly predicts it 29% of the time. On the other hand, when tested with interviews with an average word count of 303 words, the LDA model correctly predicts the interview category 56% of the time and LIWC, 74% of the time. Advantages and disadvantages of the two approaches are discussed.

Video Telehealth Occupational Therapy Services for Older Veterans: National Survey Study.

BACKGROUND: Occupational therapy (OT) is a vital service that supports older adults' ability to age in place. Given the barriers to accessing care, video telehealth is a means of providing OT. Even within Veterans Health Administration (VHA), a pioneer in telehealth, video telehealth by OT practitioners to serve older adults is not well understood. OBJECTIVE: This study examines VHA OT practice using video telehealth with older veterans using an implementation framework. METHODS: A web-based national survey of VHA OT practitioners conducted between September and October 2019 contained a mix of mostly closed questions with some open-text options. The questions were developed using the Promoting Action on Research Implementation in Health Services model with input from subject matter experts. The questions gathered the extent to which VHA OT practitioners use video telehealth with older veterans; are comfortable with video telehealth to deliver specific OT services; and, for those using video telehealth with older veterans, the barriers, facilitators of change, and perceived benefits of video telehealth. RESULTS: Of approximately 1455 eligible VHA OT practitioners, 305 participated (21.0% response rate). Most were female (196/259, 75.7%) occupational therapists (281/305, 92.1%) with a master's degree (147/259, 56.8%) and 10 years or fewer (165/305, 54.1%) of VHA OT practice. Less than half (125/305, 41.0%) had used video telehealth with older veterans, and users and nonusers of video telehealth were demographically similar. When asked to rate perceived comfort with video telehealth to deliver OT services, participants using video telehealth expressed greater comfort than nonusers, which was significant for 9 of the 13 interventions: activities of daily living (P<.001), instrumental activities of daily living (P=.004), home safety (P<.001), home exercise or therapeutic exercise (P<.001), veteran or caregiver education (P<.001), durable medical equipment (P<.001), assistive technology (P<.001), education and work (P=.04), and wheelchair clinic or seating and positioning (P<.001). More than half (74/125, 59.2%) of those using video telehealth reported at least one barrier, with the most frequently endorsed being Inadequate space, physical locations and related equipment. Most (92/125, 73.6%) respondents using video telehealth reported at least one facilitator, with the most frequently endorsed facilitators reflecting respondent attitudes, including the belief that video telehealth would improve veteran access to care (77/92, 84%) and willingness to try innovative approaches (76/92, 83%). CONCLUSIONS: Most VHA OT survey respondents had not used video telehealth with older veterans. Users and nonusers were demographically similar. Differences in the percentages of respondents feeling comfortable with video telehealth for specific OT interventions suggest that some OT services may be more amenable to video telehealth. This, coupled with the primacy of respondent beliefs versus organizational factors as facilitators, underscores the need to gather clinicians' attitudes to understand how they are driving the implementation of video telehealth.

Profile of social self-management practices in daily life with Parkinson's disease is associated with symptom severity and health quality of life.

PURPOSE: Social participation is a key determinant of healthy aging, yet little is known about how people with Parkinson's disease manage social living. This study describes individual differences in social self-management practices and their association with symptom severity and health quality of life. METHODS: People with Parkinson's disease (N = 90) completed measures of healthy routines, activities and relationships, symptom severity, and health related quality of life. Cluster analysis identified profiles of social self-management practices. Analysis of variance tested differences between profiles in symptom severity and health quality of life. RESULTS: Participants clustered into one of seven groups according to different combinations of three practices: health resources utilization, activities in home and community, and social support relationships. The healthiest cluster engaged equally in all three practices at above sample average degree of engagement. Four clusters that engaged at or above sample average in activities in home and community experienced less health problems than three clusters that engaged below average. Variation in aspects of social lifestyle unrelated to health appeared also to contribute to profile diversity. CONCLUSION: Findings provide insight into similarity and variation in how people with Parkinson's disease engage with social self-management resources and point to person-centered interventions.Implications for RehabilitationSocial self-management is a biopsychosocial construct to identify and describe self-care practices that engage one's social resources for managing healthful daily living.People with Parkinson's disease vary in their profiles of engaging in social self-management practices in daily living, and this variability relates to severity of symptoms and health quality of life.Learning how to identify health-centered social self-management practices may help people with Parkinson's disease to focus on the healthfulness of their own practices.Learning how to strategically engage one's social resources as part of self-care may help people with Parkinson's disease to master managing their health and well-being in daily life.

Self-management rehabilitation and health-related quality of life in Parkinson's disease: a randomized controlled trial.

The purpose of this randomized controlled trial was to determine whether increasing hours of self-management rehabilitation had increasing benefits for health-related quality of life (HRQOL) in Parkinson's disease beyond best medical treatment, whether effects persisted at 2 and 6 months of follow-up, and whether targeted compared with nontargeted HRQOL domains responded more to rehabilitation. Participants on best medication therapy were randomly assigned to one of three conditions for 6 weeks intervention: 0 hours of rehabilitation; 18 hours of clinic group rehabilitation plus 9 hours of attention control social sessions; and 27 hours of rehabilitation, with 18 in clinic group rehabilitation and 9 hours of rehabilitation designed to transfer clinic training into home and community routines. Results (N = 116) showed that at 6 weeks, there was a beneficial effect of increased rehabilitation hours on HRQOL measured with the Parkinson's Disease Questionnaire-39 summary index (F(1,112) = 6.48, eta = 0.23, CI = 0.05-0.40, P = 0.01). Benefits persisted at follow-up. The difference between 18 and 27 hours was not significant. Clinically relevant improvement occurred at a greater rate for 18 and 27 hours (54% improved) than for 0 hours (18% improved), a significant 36% difference in rates (95% CI = 20-52% difference). Effects were largest in two targeted domains: communication and mobility. More concerns with mobility and activities of daily living at baseline predicted more benefit from rehabilitation.

Expressive behavior in Parkinson's disease as a function of interview context.

OBJECTIVE: Parkinson's disease affects the ability to express motivation through face, body, and voice; contextual factors may facilitate or inhibit expressive behavior. The purpose of this study was to determine whether qualities of the interview context are associated with client motivational behavior in Parkinson's disease. METHOD: Men and women with Parkinson's disease (N = 106) discussed 2 topics (enjoyable activity vs. frustrating activity) during an assessment with a female or male interviewer. From videotaped clips, displays of 4 categories of motivation and 12 verbal and 18 nonverbal, behavioral patterns were rated. RESULTS: During the discussion of enjoyable activities, participants used more positive words, smiled more, and were more facially expressive. Participants were less talkative about their negative feelings and appeared to be more apathetic with the same-gender interviewer. CONCLUSION: Occupational therapy practitioners should vary the emotional tone of their questions to improve the validity of motivation assessments.

Play and cognition among young children reared in an institution.

The relationship between cognitive functioning and play behaviors of children residing in an orphanage was examined. Twenty-six young children (15 boys) between 10 and 38 months of age participated. More developmentally competent play behaviors were highly related to better performance on cognitive functioning as measured by the Bayley Scales of Infant Development (r = .78, p < or = .01). The participants' play behaviors were less competent compared to previous data for children of the same chronological age living at home on four out of five levels of symbolic play (p < or = .05). However, when compared to data for children living at home with similar cognitive development, the participants demonstrated no significant differences in symbolic play (p > or =.05). The findings suggest that the relationship between thinking and playing is robust, even in an institutional environment. Additionally, practitioners assessing children from institutions who cannot engage in standardized testing may consider observing play behaviors to make an initial estimate of developmental status.

Caregiver Satisfaction with a Video Telehealth Home Safety Evaluation for Dementia.

Family caregivers are vital to telehealth-delivered dementia care. The objective of this mixed methods descriptive study conducted in the VA Bedford Healthcare System was to examine caregiver satisfaction with a video telehealth dementia home safety occupational therapy evaluation. Ten caregivers of Veterans with dementia participated. Ratings of caregiver satisfaction, measured by nine Likert scale items including ability to see and hear, were examined in relation to person and visit-related contextual factors extracted from research assistants' field notes, to develop an in-depth understanding of caregiver experience. Person factors included caregiver age and gender and Veteran cognitive status. Visit-related contextual factors included occurrence of technical glitches. Caregiver visit satisfaction was overall positive, with exceptions related to technological glitches and the presence of the person with dementia during the visit. Veteran cognitive status appeared to influence caregiver satisfaction. Implications of the study are that proactively addressing technical glitches and incorporating dementia stage-specific approaches may optimize caregivers' telehealth experience.

The influence of facial masking and sex on older adults' impressions of individuals with Parkinson's disease.

Parkinson's disease (PD) involves facial masking, which may impair social interaction. Older adult observers who viewed segments of videotaped interviews of individuals with PD expressed less interest in relationships with women with higher masking and judged them as less supportive. Masking did not affect ratings of men in these domains, possibly because higher masking violates gender norms for expressivity in women but not in men. Observers formed less accurate ratings of the social supportiveness and social strain of women than men, and higher masking decreased accuracy for ratings of strain. Results suggest that some of the problems with social relationships in PD may be due to inaccurate impressions and reduced desire to interact with individuals with higher masking, especially women.

Changes in walking activity and endurance following rehabilitation for people with Parkinson disease.

OBJECTIVE: To investigate changes in walking activity and endurance after interdisciplinary rehabilitation in people with Parkinson disease (PD). DESIGN: Randomized controlled trial. SETTING: Clinic, home, and community. PARTICIPANTS: Mild to moderate PD (Hoehn and Yahr stage 2-3). INTERVENTIONS: Three experimental conditions lasting 6 weeks in duration: (1) no active rehabilitation; (2) 3.0 hours of interdisciplinary rehabilitation a week; or (3) 4.5 hours of interdisciplinary rehabilitation a week. Participants had stable medication regimes during the study. MAIN OUTCOME MEASURES: Walking activity was estimated with an activity monitor (AM) (time spent walking and number of 10-second walking periods) in the home and community settings over a 24-hour period. Walking endurance was measured in the clinic with the two-minute walk test (2MWT). Linear contrast analyses were applied to examine changes in walking activity and endurance after higher doses of rehabilitation, and 2-way analysis of variance models with interaction were applied to examine the effect of high and low baseline walking levels on changes. RESULTS: The 2MWT was completed by 108 people with PD (mean age, 66.53y; with PD, 6.59y), and AM data were used from 74 of these people (mean age, 66.7y; with PD, 5.8y). Improvement in AM measures and the 2MWT did not significantly change across increasing dosages of interdisciplinary rehabilitation. Higher doses of rehabilitation resulted in significant improvements in the 2MWT for subjects with low baseline walking endurance (P=.001), and in AM measures for subjects with high baseline walking activity (P<.02). CONCLUSIONS: Interdisciplinary rehabilitation can improve walking activity and endurance depending on baseline walking levels.

The self-management balancing act of spousal care partners in the case of Parkinson's disease.

BACKGROUND: Living with and caring for someone with chronic illness can lead to limitations in activity and social participation for the care partner. Past research emphasizes the importance of care partners taking care of themselves physically and emotionally so they can stay healthy to support the care recipient. There is little information regarding how the care partner takes care of their own social lives. The purpose of this study was to explore the concept of social self-management from the perspective of spousal care partners of people with Parkinson's disease. METHOD: Twenty spousal care partners of people with Parkinson's disease were interviewed three times. A grounded theory approach informed data analysis. RESULTS: Findings that emerged from the data focused on balance in activities, support, and emotions and were summarized into three main themes: (1) Activities: Caregiving and beyond; (2) Strategies to support self and spouse; and (3) Emotional impact: Burden and compassion. CONCLUSION: This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships. Implications for rehabilitation The focus of rehabilitation is often on the person diagnosed with the chronic condition. Living with and caring for someone with a chronic illness, such as Parkinson's disease, can lead to limitations in activity and social participation for the care partner. Including care partners in the rehabilitation process is key to helping maintain their health and well-being. Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Experienced facial masking indirectly compromises quality of life through stigmatization of women and men with Parkinson's disease.

This study examined the relationship between self-reported facial masking and quality of life (QoL) in people with Parkinson's disease (PD), and tested experienced stigma as a mediator and gender as a moderator of this relationship. The strength of stigma as a mediator was compared against an alternative mediator, depression. Ninety people with PD (34 women) rated difficulty showing facial expression (masking), and completed the Stigma Scale for Chronic Illness, Geriatric Depression Scale (15-item), and Parkinson's Disease Questionnaire-39. A conditional process model tested the indirect effect of facial masking on QoL through stigma, separately for women and men. A parallel indirect model included both stigma and depression to compare their statistical and clinical significance as mediators. Gender-moderated mediation of stigma reduced the association between facial masking and QoL to non-significance, suggesting stigma explained the association between facial masking and QoL. While facial masking was more stigmatizing for women than for men, stigma mediated the facial masking-QoL association for both women and men. Stigma (controlling for depression) reached a statistically and clinically significant level of mediation, whereas depression (controlling for stigma) reached a statistically yet not clinically significant level of mediation. People with PD who experience more severe facial masking feel more stigmatized, especially women. Regardless of gender, an increase in stigma from facial masking increases the likelihood of compromised QoL that reaches both statistical and clinical levels of significance.

Emotional cues from expressive behavior of women and men with Parkinson's disease.

OBJECTIVE: Emotional experience of people with Parkinson's disease is prone to being misunderstood by observers and even healthcare practitioners, which affects treatment effectiveness and makes clients suffer distress in their social lives. This study was designed to identify reliable emotional cues from expressive behavior in women and men with Parkinson's disease. METHOD: Videotaped expressive behavior of 96 participants during an interview of discussing enjoyable events was rated using the Interpersonal Communication Rating Protocol. Indices from emotional measures were represented in three components. Correlational analyses between expressive behavior domains and emotional components were conducted for the total sample and by gender separately. RESULTS: More gross motor expressivity and smiling/laughing indicated more positive affect in the total sample. Less conversational engagement indicated more negative affect in women. However, women with more negative affect and depression appeared to smile and laugh more. CONCLUSION: This study identified reliable cues from expressive behavior that could be used for assessment of emotional experience in people with Parkinson's disease. For women, because smiling/laughing may convey two possible meanings, that is, more positive and more negative affect, this cue needs to be interpreted cautiously and be used for detecting the intensity, not the type, of emotional experience. Healthcare practitioners should be sensitive to valid cues to make an accurate evaluation of emotion in people with Parkinson's disease.

Effects of caregiver-child interactions on play occupations among young children institutionalized in Eastern Europe.

OBJECTIVE: We investigated whether children institutionalized in an orphanage would engage in more developmentally competent play with their caregivers as opposed to playing alone and whether specific qualities of caregiver-child interactions were associated with more developmentally competent play. METHOD: Twenty-six children, ages 10 to 38 months, participated in independent play sessions and in a play session with a caregiver. Interrater reliability for coding play performance was established using the weighted kappa statistic (M = .82). Twelve pediatric experts rated both child and caregiver behaviors for the interactive sessions (mean effective reliability with intraclass correlations = .89). RESULTS: The children demonstrated more developmentally competent play when interacting with a caregiver than when playing alone, t (25) = -1.88, p < .04, one-tailed. The effect size was moderate (d = .53). Longer periods of institutionalization were associated with less improvement in play performance from independent to interactive play sessions (r = -.51, p < .01). Successful engagement for the child was associated with having a caregiver who provided more structure and assistance and who was directive and encouraging (r = .82, .75, .75, and .64, respectively). CONCLUSION: Caregivers facilitated more developmentally competent participation in play with children residing in an orphanage, despite the fact that these interactions occurred in an environment vulnerable to many challenges not typical of an exclusive caregiver-child relationship. Findings are discussed in the context of environmental challenges and occupational therapy practice.

Mapping spontaneous facial expression in people with Parkinson's disease: A multiple case study design.

People with Parkinson's disease (PD) often experience a decrease in their facial expressivity, but little is known about how the coordinated movements across regions of the face are impaired in PD. The face has neurologically independent regions that coordinate to articulate distinct social meanings that others perceive as gestalt expressions, and so understanding how different regions of the face are affected is important. Using the Facial Action Coding System, this study comprehensively measured spontaneous facial expression across 600 frames for a multiple case study of people with PD who were rated as having varying degrees of facial expression deficits, and created correlation matrices for frequency and intensity of produced muscle activations across different areas of the face. Data visualization techniques were used to create temporal and correlational mappings of muscle action in the face at different degrees of facial expressivity. Results showed that as severity of facial expression deficit increased, there was a decrease in number, duration, intensity, and coactivation of facial muscle action. This understanding of how regions of the parkinsonian face move independently and in conjunction with other regions will provide a new focus for future research aiming to model how facial expression in PD relates to disease progression, stigma, and quality of life.

Forging Alliances in Interdisciplinary Rehabilitation Research (FAIRR): A Logic Model.

In a patient-centered care era, rehabilitation can benefit from researcher-clinician collaboration to effectively and efficiently produce the interdisciplinary science that is needed to improve patient-centered outcomes. The authors propose the use of the Forging Alliances in Interdisciplinary Rehabilitation Research (FAIRR) logic model to provide guidance to rehabilitation scientists and clinicians who are committed to growing their involvement in interdisciplinary rehabilitation research. We describe the importance and key characteristics of the FAIRR model for conducting interdisciplinary rehabilitation research.