Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

People with Parkinson’s disease who live in rural communities may lack information and support regarding their condition, compared to those in urban or suburban areas. For the study described herein, the researchers sought to gain a deeper understanding of support group experiences of rural Parkinson’s disease stakeholders through merging an interpretive phenomenological design with Community-based Participatory Research (CBPR). Using this merged approach, we collected qualitative data from five focus groups to gain a community perspective. The qualitative data was analyzed thematically, first, and then further explored for an overall essence. The theme, Support Group Benefits: Opportunities for Communication expounded upon the importance of support groups to Parkinson’s disease stakeholders. Barriers to Support Group Participation represented how the disease and the rural living conditions inhibited support group participation. Strategies to Improve Support Group Access demonstrated the different ways that the stakeholders had tried to overcome barriers and strengthen support groups. Notably, some participants discussed ways that support groups could increase their accessibility to more individuals with Parkinson’s living rurally so that they endured as a future resource. The themes and accessibility recommendations that emerged led the researchers to interpret the overall essence of this work as, experiencing support group benefits despite barriers, leaving a legacy

Perceptions of online information privacy among individuals with Parkinson\u27s Disease

The growth in Internet use for health care is paralleled by the increase in chronic health conditions such as Parkinson’s disease (PD). This study explores the perceptions o f online privacy held by individuals with PD. Ten individuals with PD participated in hour-long, semi- structured, in-person interviews. Analysis of the transcripts yielded four major themes regarding participant perceptions: (1) online information privacy, including discussions o f private information, exceptions, and anonymity; (2) media, family, and friends as sources o f knowledge about online information safety; (3) reasons for privacy concerns, including physical vulnerability, the lack o f ‘people’ on the Internet, and attitudes toward privacy and disclosure; and, (4) non-privacy related reasons for non-use o f Internet resources. Highlighted aspects o f participant perceptions include: lack o f awareness concerning privacy legislation and online PD communities, the perceived value of online resources as factual not supportive, and inability to form bonds of trust in online relationships

Professional and lay facilitators\u27 perceptions of roles, goals, and strategies to promote social support and self-management in face-to-face support groups for adults with multiple sclerosis and myotonic muscular dystrophy

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Logging in strained, logging out sustained: the utility of online support groups for caregivers of individuals with advanced-stage cancer

"The current investigation explored both the process and content of four separate online support groups run through CancerChatCanada, with a national sample of caregivers of individuals with advanced-stage cancers. A grounded theory analysis of the chat transcripts led to the generation of the core category, ""Logging In Strained, Logging Out Sustained"", which captures the essence of the group experience, and is characterized by the following main categories: (I) The Life of a Caregiver; (2) Group as Something to Look Forward to; and (3) Facilitator as Guarantor of Maximal Group Utility. Altogether, the findings that emerged from this study provide insight into the range and depth of the cancer caregiver experience, the meaning of online caregiver support groups to those who utilize them, and the various ways in which facilitators skillfully manage group sessions so to enhance their value.

Linguistic Predictors of Peer Responsiveness in an Online Cancer Support Group

Introduction: Little is known about how group cohesion develops in online support group communities. Previous research suggests that message content, selfdisclosure, and emotional expression may be central to this process. The purpose of this study was to identify linguistic and qualitative characteristics of participants.\u27 Messages that predict how other participants respond in an asynchronous discussion board for cancer-related distress. Method: 525 discussion board messages posted by 116 participants in the healthspace.net trial were collected. Linguistic Inquiry and Word Count (2001) was used to identify linguistic markers of emotional expression and pronoun use. Message topics were identified using qualitative analysis. Logistic regression and chi-square analyses were used to evaluate whether linguistic characteristics and message topics predicted receiving a response from other survivors in the online group. Results: Messages were more likely to receive a reply if they had higher word count, OR=1.30, p=.001, or fewer second person pronouns, OR=.923, p=.040. Messages were less likely to receive a reply if they evidenced high levels of positive emotion, OR=.94, p=.03. The most common message topics related to self-disclosure (51%), the group (38.5%), medical experiences (30.9%,), and experiences related to the website (30.1%). Several types of message topics were associated with greater likelihood of a reply: self-disclosure (p\u3c.001), medical experiences (p=.01), relationship issues (p=.05), and introductory posts (p\u3c.01). Implications: Informing participants how to introduce themselves to the group (i.e., detailed and self-focused messages discussing personal issues such as the effects of illness on life and relationships) could promote cohesion and enhance overall intervention engagement

Online peer support for people with Young Onset Dementia: development of a best practice guidance

Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social roles in the community. Peer support provides social opportunities where people experience mutual understanding and empathy because they are all experiencing similar challenges. People also exchange practical information on dementia and signpost support services. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers and offers a variety of platforms and modes of communication. The aim of this thesis was to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for peer support facilitators. Methods: This thesis followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage, including different sub-studies. First, a systematic literature study was conducted, followed by 4 focus groups, an online survey with 69 respondents, and 9 interviews. All participants were people living with YOD. Finally, participants, professionals, and researchers provided input on the Best Practice Guidance. Findings: For many people with YOD (online) peer support is a lifeline and gives hope and a sense of purpose. Some were hesitant to engage in peer support, for example because they were anxious about seeing others in an advanced stage, or they did not know what to expect. Others were unaware of online peer support options and how they could get involved. This indicates a need for better advertisement and signposting. The Best Practice Guidance provides (1) people with YOD with information on what online peer support entails, (2) group facilitators with guidelines on how to optimise online peer support for people with YOD, and (3) healthcare professionals with an opportunity to signpost to online peer support

Guidelines for TMS/tES Clinical Services and Research through the COVID-19 Pandemic

BACKGROUND: The COVID-19 pandemic has broadly disrupted biomedical treatment and research including non-invasive brain stimulation (NIBS). Moreover, the rapid onset of societal disruption and evolving regulatory restrictions may not have allowed for systematic planning of how clinical and research work may continue throughout the pandemic or be restarted as restrictions are abated. The urgency to provide and develop NIBS as an intervention for diverse neurological and mental health indications, and as a catalyst of fundamental brain research, is not dampened by the parallel efforts to address the most life-threatening aspects of COVID-19; rather in many cases the need for NIBS is heightened including the potential to mitigate mental health consequences related to COVID-19. OBJECTIVE: To facilitate the re-establishment of access to NIBS clinical services and research operations during the current COVID-19 pandemic and possible future outbreaks, we develop and discuss a framework for balancing the importance of NIBS operations with safety considerations, while addressing the needs of all stakeholders. We focus on Transcranial Magnetic Stimulation (TMS) and low intensity transcranial Electrical Stimulation (tES) - including transcranial Direct Current Stimulation (tDCS) and transcranial Alternating Current Stimulation (tACS). METHODS: The present consensus paper provides guidelines and good practices for managing and reopening NIBS clinics and laboratories through the immediate and ongoing stages of COVID-19. The document reflects the analysis of experts with domain relevant expertise spanning NIBS technology, clinical services, and basic and clinical research - with an international perspective. We outline regulatory aspects, human resources, NIBS optimization, as well as accommodations for specific demographics. RESULTS: A model based on three phases (early COVID-19 impact, current practices, and future preparation) with an 11-step checklist (spanning removing or streamlining in-person protocols, incorporating telemedicine, and addressing COVID-19-associated adverse events) is proposed. Recommendations on implementing social distancing and sterilization of NIBS related equipment, specific considerations of COVID-19 positive populations including mental health comorbidities, as well as considerations regarding regulatory and human resource in the era of COVID-19 are outlined. We discuss COVID-19 considerations specifically for clinical (sub-)populations including pediatric, stroke, addiction, and the elderly. Numerous case-examples across the world are described. CONCLUSION: There is an evident, and in cases urgent, need to maintain NIBS operations through the COVID-19 pandemic, including anticipating future pandemic waves and addressing effects of COVID-19 on brain and mind. The proposed robust and structured strategy aims to address the current and anticipated future challenges while maintaining scientific rigor and managing risk

Online peer support for people with Young Onset Dementia: development of a best practice guidance

Introduction: Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD face unique challenges compared to older adults and often experience stigma. YOD can have a negative impact on someone’s sense of self, identity, and social roles in the community. Peer support provides social opportunities where people experience mutual understanding and empathy because they are all experiencing similar challenges. People also exchange practical information on dementia and signpost support services. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers and offers a variety of platforms and modes of communication. The aim of this thesis was to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for peer support facilitators. Methods: This thesis followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage, including different sub-studies. First, a systematic literature study was conducted, followed by 4 focus groups, an online survey with 69 respondents, and 9 interviews. All participants were people living with YOD. Finally, participants, professionals, and researchers provided input on the Best Practice Guidance. Findings: For many people with YOD (online) peer support is a lifeline and gives hope and a sense of purpose. Some were hesitant to engage in peer support, for example because they were anxious about seeing others in an advanced stage, or they did not know what to expect. Others were unaware of online peer support options and how they could get involved. This indicates a need for better advertisement and signposting. The Best Practice Guidance provides (1) people with YOD with information on what online peer support entails, (2) group facilitators with guidelines on how to optimise online peer support for people with YOD, and (3) healthcare professionals with an opportunity to signpost to online peer support

Anxiety and Parkinson’s: Examining the Efficacy of Psychological Interventions and the Co-Development of a Standardised Measure

Background: Parkinson’s is a progressive neurodegenerative condition, which is often accompanied by anxiety. The anxiety experienced by people with Parkinson’s is poorly characterised, and often undiagnosed and undertreated. Establishing accurate and reliable means of characterising and treating anxiety in this population may aid diagnosis and improve treatment. At present, only a few studies have investigated the effectiveness of psychological interventions specifically for people with Parkinson’s and anxiety. Methods: This thesis portfolio consists of a systematic review with meta-analysis, and an empirical study. The systematic review examined the efficacy of psychological interventions for people with Parkinson’s and anxiety. The empirical study conducted secondary analyses of a database of 254 people with Parkinson’s and anxiety to develop a new scale, in long and short forms. The scales were developed using exploratory factor analysis, validity and reliability analyses, and confirmatory factor analysis. Results: The systematic review identified 12 studies (n = 170) using a range of study designs, including case studies, uncontrolled and controlled trials. Meta-analyses of randomised controlled trials (n = 4) and pre-post intervention data (n = 6) found preliminary evidence that psychological interventions can be efficacious for people with Parkinson’s and anxiety. The empirical study developed and provided initial validation for the ‘Comprehensive Anxiety and Parkinson’s Scale’ (CAPS), in its long (54 items), and short (24 items) versions. Conclusions: Psychological interventions may be beneficial in reducing anxiety for people with Parkinson’s. However, more, high quality randomised controlled trials are needed. The standardised CAPS scales offer comprehensive means of assessing the experience of anxiety in Parkinson’s. ‘Parkinson’s’ is the preferred term by people with Parkinson’s (Parkinson’s UK, 2021) and will be used throughout this thesis portfolio, with the exception of the main papers (Chapter 2 and 4) written for submission to the Movement Disorders journal which uses the term Parkinson’s disease

The experience of illness and employment among young adults with a long-term condition

Employment is currently conceived by the UK government as a panacea for achieving social justice among disadvantaged groups in society. Welfare to work policies are being introduced to increase the employment rates of people with illhealth and/or disability. There is little research on how individuals with chronic illness from childhood fare in the labour market as an adult and the perceptions of these groups towards work and career prospects. A qualitative study was undertaken using grounded theory to explore these issues among adults from three disease categories. In total, 30 respondents were interviewed aged between 20-32 years; 10 with cystic fibrosis, 10 with Type 1 diabetes and 10 with arthritis with gender represented equally across the three groups.Respondents had varying degrees of disease severity. There was, however, a consensus among these young adults in how symptoms were experienced and managed. Respondents viewed themselves as competent individuals and their approach to care reflected this standpoint. Management of illness was largely taken-for-granted and perceived only as intrusive by those with deteriorating health. There was some discrepancy between the apparent advice given by health care professionals and decisions made by individuals about illness which were located in the social fabric of day-to-day activities. No specialist careers guidance had been available to these young adults. Career choice was hindered by lack of educational attainment in some cases and restricted employment opportunities in others. Most respondents were not familiar with welfare to work initiatives. At the point of interview, 20 were in full-time jobs, 2 worked part-time, 3 attended higher educational institutions and 5 were out of work receiving full disabilityrelated benefits. Disclosure of health status in employment emerged as a key issue. Jobs were sought or valued if they were well paid, provided opportunities for advancement and were fulfilling. Half the sample reported having to make some sort of adjustment to manage working lives. The majority of these involved self-care strategies such as buying special adaptations, getting up extra early on work days and making great efforts to accommodate meals into busy schedules. These types of adjustments were seemingly unacknowledged by employers. Few reported direct discrimination in the workplace. Bad employment practice was experienced but this was regarded as poor management behaviour rather than organisational policy. Severity of illness did not appear to be linked to more expressed anxiety about the future. Women in the sample spoke of the tension between lives as desired and lives as experienced in relation to the prospect of having children.These findings are discussed in relation to past and current research about young people, illness and work and contemporary UK polices on employment and health care