Taking Time: A Mixed Methods Study of Parkinson’s Disease Caregiver Participation in Activities in Relation to Their Wellbeing

© 2020 Lia Prado et al. This is an open access article distributed under the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Objectives. Although many studies have shown that psychosocial interventions, such as dance classes, can improve quality of life for people with Parkinson’s disease (PD): few have addressed the role of, and potential benefits to, the caregivers in such activities. This mixed methods study explored the reasons for caregiver participation in a variety of activities and considered whether participation in, or abstention from these, affected the wellbeing of the caregivers. Method. Transcriptions of a focus group (two people with PD, two caregivers) and eight semistructured interviews (caregivers) were analysed using Grounded Theory (GT). To test the hypotheses derived from the GT, caregivers (n = 75) completed an online survey about activities they and the person they care for participated in, alongside the PDQ-Carer questionnaire, to establish the caregiver’s levels of wellbeing. Results. Qualitative findings suggested that caregivers tried to find a balance between caring for the person with PD and participating in activities to attend to their own needs. Reasons for participating in activities for people with PD included being able to socialise in an empathetic safe space, alongside engaging in physical activity that provided some respite distraction, such as dancing with others to music. Reasons for not participating included generating time for oneself and increasing the independence of the person with PD. Quantitative results suggested that most of the participants’ wellbeing was not compromised, although this was gendered: female caregivers reported lower wellbeing scores than male caregivers. Overall, 62% of caregivers participated in joint activities. Linear regression revealed a significant relationship between nonparticipation in daily activities and stress levels for female caregivers only, whereby the more independent the person with PD was, the lower the stress of the caregiver. Conclusion. This study suggests that caregivers of people with PD can find a healthy balance in terms of their own wellbeing by jointly participating in two-thirds of activities while ensuring the remaining third is time reserved for themselves.Peer reviewe

Wrist-Worn Accelerometer Measures of Activity by People with Parkinson's Attending Dance Classes

There has been increasing interest from researchers, dance artists and health professionals regarding the physical and psychological benefits of dance for people with Parkinson’s, particularly as a possible adjunct therapeutic intervention to medication. Studies examining the effect of dance on health outcomes such as parameters of movement have typically used brief, snap-shot assessments that limit understanding of movement to the timeframe in which the test or self-report measure is administered. Furthermore, such measures may be influenced by mood and cognitive capabilities. Accelerometry has been used to study the effect of various health interventions on the physical activity levels of people with Parkinson’s, but the types of activities studied have not yet included dance. The present thesis aimed to investigate the application of wrist-worn accelerometers as an objective measure of movement to dance for Parkinson’s research. Specifically, this work intended to advance current knowledge regarding the uses of accelerometers with people with Parkinson’s by exploring i) the feasibility of using wrist-worn devices to measure movement parameters during and after participation in a dance class, ii) participant adherence to a wrist-worn device , iii) the validity of wrist-placement in the assessment of movement, iv) the usefulness of volume of movement as a single summary metric of movement, and v) how values for the assessment of physical activity intensity derived from a wrist-worn accelerometer compare to previously published values obtained from other device placements. A series of exploratory studies were undertaken to address these aims. The first study addressed the gap in the literature regarding the use of accelerometry in the measurement of the level and pattern of movement made by people with and without Parkinson’s during a dance class. Participant triads, consisting of one person with Parkinson’s, an age-matched control and a young adult attending the same class at the University of Hertfordshire, wore a GENEActiv accelerometer on their wrist for an hour dance session and the following hour rest session. The results showed that the accelerometers accurately tracked the movement of the participant triads and detected between-group differences across all triads, such that young adults were significantly more active over the two hours compared to the participants with Parkinson’s and age-matched controls. The second study examined whether an objective measure of movement, derived from the accelerometers, supported the anecdotal reports of people with Parkinson’s of maintained levels of movement during the hours and days following attendance to a dance class. To this end, people with Parkinson’s and age-matched dancers (PD-D and AM-D, respectively) were asked to wear an accelerometer on their wrist over six consecutive days following attendance to a class, a free-living setting, and on a week when they did not attend a class. Accelerometer-derived movement and sleep metrics were compared between these two groups and to a separate control group of people with Parkinson’s who had never attended dance classes (PD-C). All participants were compliant with wearing the accelerometer over the consecutive days and very few removed the device. No significant differences were found between participant groups in terms of volume of movement and sleep quality. Though non-significant, PD-Ds and AM-Ds were 7% and 10% less physically active, respectively, on a Friday afternoon on a no-dance week compared to a dance week. No significant difference was found when movement was examined as a daily average, indicating that if there is an effect of dance on movement, it is likely to be short-lived. The final study focused on the development of values that can be used to interpret raw acceleration data derived from wrist-worn accelerometers in terms of physical activity intensity levels, specifically for use with people with Parkinson’s. Volume of movement (derived from a wrist, hip and ankle-worn device) and physiological energy expenditure (derived from a spiroergometry device) were calculated for people with Parkinson’s and age-matched controls as they undertook a variety of exercises and household activities in a sports laboratory. Corroborating the findings of previous research, the results showed that volume of movement derived from a wrist-worn device significantly predicted energy expenditure, but the addition of a second hip-worn accelerometer increased accuracy. Though no differences were found between the participant groups for volume of movement and energy expenditure, people with Parkinson’s rated all activities as significantly more exerting. This finding indicates that physiological exertion was similar between the two groups and that the symptoms of Parkinson’s may play a role in perceived exertion. Taken together, these studies demonstrate that wrist-worn accelerometers are acceptable and sensitive devices that can be used to investigate the engagement of people with and without Parkinson’s in activities such as dance. Volume of movement as an accelerometer-derived outcome is useful when physical activity is monitored under observable and predictable conditions, however future exploratory studies should consider incorporating a measure of physical activity intensity to further interpret acceleration data in light of government physical activity guidelines, particularly when monitoring movement in a free-living context

Employees’ support strategies for mental wellbeing during and beyond the COVID-19 pandemic: Recommendations for employers in the UK workforce

Throughout the COVID-19 pandemic, and beyond for many businesses, employees have had to adapt to new ways of working due to disruptions in traditional practices. It is therefore crucial to understand the new challenges that employees are facing when it comes to taking care of their mental wellbeing at work. To that end, we distributed a survey to full-time UK employees (N = 451) to explore how supported they felt throughout the pandemic, and to identify whether there are any additional types of support they would like to receive. We also compared employees’ intentions to seek help before versus during the COVID-19 pandemic, and assessed their current attitudes toward mental health. Based on direct employee feedback, our results show remote workers felt more supported throughout the pandemic compared to hybrid workers. We also found that employees who had previously experienced an episode of anxiety or depression were significantly more likely to want extra support at work compared to those who had not. Furthermore, employees were significantly more likely to seek help for their mental health during the pandemic compared to before. Interestingly, the largest increase in intentions to seek help during the pandemic compared to before was with digital health solutions. Finally, we found that the strategies managers have adopted to better support their employees, an employee’s mental health history, and their attitude to mental health all contributed to significantly increasing the likelihood that an employee would disclose a mental health concern to their line manager. We provide recommendations that encourage organisations to make changes to better support their employees, and we highlight the importance of mental health awareness training for both managers and employees. This work is of particular interest to organisations who are looking to tailor their current employee wellbeing offer to a post-pandemic world

Protocol for a mixed-methods investigation of quality improvement in early childhood education and care in Australia

International recognition of the early years as a crucial foundational period has led to the design and implementation of quality rating and improvement systems (QRIS) that define, communicate, and monitor the components of quality in early childhood education and care (ECEC). The aim of these policies is to achieve effective quality assurance and improvement through a system-oriented approach to assessment and evaluation. Informed by ecological systems theory, this paper outlines a three-phase, mixed-methods design for researching a national sample of child care centres that showed overall improvement on the Australian National Quality Standard (NQS) assessment and rating (A&R) criteria. The study samples are drawn from a national dataset of centre-based child care services with two or more A&R rounds and an initial rating of Working Towards NQS (N = 1,935). The results of this study will provide insights into the macro-, exo-, meso- and micro-systems level factors and strategies that support quality in ECEC services

Mapping the leap: Differences in quality improvement in relation to assessment rating outcomes

Introduction: Australia’s National Quality Standard (NQS) outlines the criteria to assess the quality of early childhood services. A four-point rating scale: (i) Exceeding NQS; (ii) Meeting NQS; (iii) Working Toward NQS; and (iv) Significant Improvement Required is applied to services following a regular assessment and rating process. Settings rated as Working Toward are reassessed within 12 months. Most settings achieved a one-step improvement in this Time 2 reassessment, moving to a Meeting rating but some settings made a two-step improvement, moving to an Exceeding rating. The QIP is a key document used by authorities to assess the quality of a service. Methods: A grounded theory, data driven approach was taken to deepen understanding of quality rating improvements in long day care services in Australia of quality rating improvements by early childhood education and care [ECEC] services in Australia. This study, part of the second phase of a three phase study involved a document analysis of the Time 2 Quality Improvement Plans (QIPs) of a representative sample of Long Day Care (LDC) services (n = 60) from all Australian states and territories to determine what factors may have contributed to these different levels of improvement, with a focus on Quality Area 1 (QA1) (Educational programs and practices) and Quality Area 7 (QA7) (Governance and leadership). The study utilized the semantic analysis tool Leximancer 4.5. Leximancer 4.5 statistically analyses the semantic relationships between concepts in documents by measuring word proximity and correlation. The software creates visual maps of concepts and their connections to each other in texts. Concepts located near one another on the map are more likely to be contextually related. This tool is particularly useful when there are multiple, complex documents to analyze, reducing the potential biases that can arise from documents that use language with which these researchers are very familiar with. Results: The analysis found clear differences between the Time 2 QIPs of services who had made a two-step rating improvement and those who made a one-step improvement. Two-step (Exceeding NQS) category improvers for QA1 placed attention in their QIPs on improvement to the program and overall practice, with an orientation to the role of the educational leader. Two-step (Exceeding NQS) category improvers for QA7 seemed to be more oriented to a systemic view of the processes encompassed by QA7; how the management of the service and information supports the work of educators, with stronger links made between leadership roles (the manager and nominated supervisor) and the work of educators. Discussion: The QIPs demonstrated how the intentional and systemic processes in these quality areas related to practice, management, and leadership

The role of digital technologies in supporting quality improvement in Australian early childhood education and care settings

This national study explored the role of digital technologies in early childhood education and care settings and whether they could contribute to quality improvement as reported by educators and assessors of quality in Australia. In this paper, data from Stage 2 of the Quality Improvement Research Project were used, which comprised 60 Quality Improvement Plans from educators linked with 60 Assessment and Rating reports from the assessors who visited early childhood centres as part of the administration of the National Quality Standards by each of Australia’s State and Territory jurisdictions. Bronfenbrenner’s ecological systems theory (Bronfenbrenner, U. (1995).Developmental ecology through space and time: A future perspective. In P. Moen, G.H. Elder, Jr., & K. Lüscher (Eds.), Examining lives in context: Perspectives on the ecologyof human development (pp. 619 – 647). American Psychological Association. https://doi.org/10.1037/10176-018; Bronfenbrenner & Ceci, Bronfenbrenner and Ceci, Psychological Review 101:568 – 586, 1994) was adopted to facilitate a systemic and dynamic view on the use of digital technologies in these 60 ECEC settings. References (e.g. comments/ suggestions/ examples) made by the educators about the implementation of digital technologies were counted and thematically analysed. Results revealed the strong role new technologies (e.g. documentation and management platforms, tablets, apps, etc.) play in the majority of ECEC settings and especially in relation to three of the seven Quality Areas: Educational programme and practice (Quality Area 1); Collaborative partnerships with families and communities (Quality Area 6) and Governance and leadership (Quality Area 7). Future directions for research are suggested and implications for embracing a more holistic, integrated and broad view on the use of digital technologies are discussed

Intergenerational Effects on the Impacts of Technology Use in Later Life: Insights from an International, Multi-Site Study

As the use of technology becomes further integrated into the daily lives of all persons, including older adults, it is important to investigate how the perceptions and use of technology intersect with intergenerational relationships. Based on the international multi-centered study Technology In Later Life (TILL), this paper emphasizes the perceptions of older adults and the interconnection between technology and intergenerational relationships are integral to social connectedness with others. Participants from rural and urban sites in Canada and the UK (n = 37) completed an online survey and attended a focus group. Descriptive and thematic analyses suggest that older adults are not technologically adverse and leverage intergenerational relationships with family and friends to adjust to new technologies and to remain connected to adult children and grandchildren, especially when there is high geographic separation between them. Participants referenced younger family members as having introduced them to, and having taught them how to use, technologies such as digital devices, computers, and social networking sites. The intergenerational support in the adoption of new technologies has important implications for helping older persons to remain independent and to age in place, in both age-friendly cities and in rural communities. The findings contribute to the growing literature in the fields of gerontology and gerontechnology on intergenerational influences and the impacts of technology use in later life and suggest the flexibility and willingness of older persons to adopt to new technologies as well as the value of intergenerational relationships for overcoming barriers to technology adoption

Analysis of Hendra Virus Fusion Protein N-Terminal Transmembrane Residues

Hendra virus (HeV) is a zoonotic enveloped member of the family Paramyoxviridae. To successfully infect a host cell, HeV utilizes two surface glycoproteins: the attachment (G) protein to bind, and the trimeric fusion (F) protein to merge the viral envelope with the membrane of the host cell. The transmembrane (TM) region of HeV F has been shown to have roles in F protein stability and the overall trimeric association of F. Previously, alanine scanning mutagenesis has been performed on the C-terminal end of the protein, revealing the importance of β-branched residues in this region. Additionally, residues S490 and Y498 have been demonstrated to be important for F protein endocytosis, needed for the proteolytic processing of F required for fusion. To complete the analysis of the HeV F TM, we performed alanine scanning mutagenesis to explore the residues in the N-terminus of this region (residues 487–506). In addition to confirming the critical roles for S490 and Y498, we demonstrate that mutations at residues M491 and L492 alter F protein function, suggesting a role for these residues in the fusion process

Non-Participants in Policy Efforts to Promote Evidence-Based Practices in a Large Behavioral Health System

Background: System-wide training initiatives to support and implement evidence-based practices (EBPs) in behavioral health systems have become increasingly widespread. Understanding more about organizations who do not participate in EBP training initiatives is a critical piece of the dissemination and implementation puzzle if we endeavor to increase access in community settings. Methods: We conducted 30 1-h semi-structured interviews with leaders in non-participating agencies who did not formally participate in system-wide training initiatives to implement EBPs in the City of Philadelphia, with the goal to understand why they did not participate. Results: We found that despite not participating in training initiatives, most agencies were adopting (and self-financing) some EBP implementation. Leadership from agencies that were implementing EBPs reported relying on previously trained staff to implement EBPs and acknowledged a lack of emphasis on fidelity. Most leaders at agencies not adopting EBPs did not have a clear understanding of what EBP is. Those familiar with EBPs in agencies not adopting EBPs reported philosophical objections to EBPs. When asked about quality assurance and treatment selection, leaders reported being guided by system audits. Conclusions: While it is highly encouraging that many agencies are adopting EBPs on their own, significant questions about fidelity and implementation success more broadly remain

Effect of clinical isolate or cleavage site mutations in the SARS-CoV-2 spike protein on protein stability, cleavage, and cell–cell fusion

The trimeric severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) spike protein (S) is the sole viral protein responsible for both viral binding to a host cell and the membrane fusion event needed for cell entry. In addition to facilitating fusion needed for viral entry, S can also drive cell-cell fusion, a pathogenic effect observed in the lungs of SARS-CoV-2-infected patients. While several studies have investigated S requirements involved in viral particle entry, examination of S stability and factors involved in S cell-cell fusion remain limited. A furin cleavage site at the border between the S1 and S2 subunits (S1/S2) has been identified, along with putative cathepsin L and transmembrane serine protease 2 cleavage sites within S2. We demonstrate that S must be processed at the S1/S2 border in order to mediate cell-cell fusion and that mutations at potential cleavage sites within the S2 subunit alter S processing at the S1/S2 border, thus preventing cell-cell fusion. We also identify residues within the internal fusion peptide and the cytoplasmic tail that modulate S-mediated cell-cell fusion. In addition, we examined S stability and protein cleavage kinetics in a variety of mammalian cell lines, including a bat cell line related to the likely reservoir species for SARS-CoV-2, and provide evidence that proteolytic processing alters the stability of the S trimer. This work therefore offers insight into S stability, proteolytic processing, and factors that mediate S cell-cell fusion, all of which help give a more comprehensive understanding of this high-profile therapeutic target