Quality of life and living with Parkinson's disease: a qualitative exploration within an Irish context.

BACKGROUND: Parkinson's disease is incurable, and the rate of progression varies meaning that people face a long future with an unpredictable condition that can significantly influence their quality of life. To date, much of the international research has focused on measuring and describing quality of life in Parkinson's from a quantitative perspective. Given its multidimensional nature, the present study aims to explore the concept using a qualitative approach so factors influencing self-reported quality of life can be understood in greater depth. METHODS: Using a qualitative descriptive approach, people with Parkinson's disease who were survey participants in the first phase of a mixed methods study exploring factors influencing health-related quality of life were invited to participate in semi-structured interviews. Eighteen participants with high (n = 6), average (n = 6), and low (n = 6) health-related quality of life (PDQ-39 SI scores) were purposively invited to participate in this study. Audio recordings were transcribed and thematically analysed using Braun and Clarke's steps (familiarisation, generating initial codes, searching for themes, reviewing, defining, naming themes, and producing the report). RESULTS: Thematic analysis revealed four overarching themes; 'Living an interrupted life,' 'Striving for 'I' in independence,' 'Unravelling identities, roles, and relationships' and 'Reconfiguring life'. These themes illuminated participants' experiences of living with Parkinson's disease and what influenced their overall quality of life. CONCLUSIONS: These findings add to the international literature by helping to achieve a deeper understanding of what it means to live with Parkinson's disease and how it influences quality of life. Participants experienced a range of fluctuating, and interconnected motor and non-motor symptoms. This finding draws attention to the impact of the often-unpredictable nature of the condition on the physical, functional, psychological, social, and spiritual dimensions of life. Quality of life was positively influenced by perceptions of independence and negative feelings of dependence. Being independent was associated with freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, or fearful. Having a positive outlook, using problem-focused strategies, and participating in hobbies, holidays, work, and involvement in local community committees were perceived positively across interviews as accentuating social dimensions of life. Resourcing self-management strategies, advanced nursing roles, and developing personalised models of community support may assist healthcare professionals in meeting the unique needs of people with Parkinson's disease thereby supporting quality of life.

Double-Tap Interaction as an Actuation Mechanism for On-Demand Cueing in Parkinson's Disease.

Freezing of Gait (FoG) is one of the most debilitating symptoms of Parkinson's disease and is an important contributor to falls. When the management of freezing episodes cannot be achieved through medication or surgery, non-pharmacological methods, such as cueing, have emerged as effective techniques, which ameliorates FoG. The use of On-Demand cueing systems (systems that only provide cueing stimuli during a FoG episode) has received attention in recent years. For such systems, the most common method of triggering the onset of cueing stimuli, utilize autonomous real-time FoG detection algorithms. In this article, we assessed the potential of a simple double-tap gesture interaction to trigger the onset of cueing stimuli. The intended purpose of our study was to validate the use of double-tap gesture interaction to facilitate Self-activated On-Demand cueing. We present analyses that assess if PwP can perform a double-tap gesture, if the gesture can be detected using an accelerometer's embedded gestural interaction recognition function and if the action of performing the gesture aggravates FoG episodes. Our results demonstrate that a double-tap gesture may provide an effective actuation method for triggering On-Demand cueing. This opens up the potential future development of self-activated cueing devices as a method of On-Demand cueing for PwP and others.

A Technological Review of Wearable Cueing Devices Addressing Freezing of Gait in Parkinson's Disease.

Freezing of gait is one of the most debilitating symptoms of Parkinson's disease and is an important contributor to falls, leading to it being a major cause of hospitalization and nursing home admissions. When the management of freezing episodes cannot be achieved through medication or surgery, non-pharmacological methods such as cueing have received attention in recent years. Novel cueing systems were developed over the last decade and have been evaluated predominantly in laboratory settings. However, to provide benefit to people with Parkinson's and improve their quality of life, these systems must have the potential to be used at home as a self-administer intervention. This paper aims to provide a technological review of the literature related to wearable cueing systems and it focuses on current auditory, visual and somatosensory cueing systems, which may provide a suitable intervention for use in home-based environments. The paper describes the technical operation and effectiveness of the different cueing systems in overcoming freezing of gait. The "What Works Clearinghouse (WWC)" tool was used to assess the quality of each study described. The paper findings should prove instructive for further researchers looking to enhance the effectiveness of future cueing systems.

A grassroots prototype for trauma-informed child welfare system change.

The development of trauma-informed child welfare systems (TICWSs) that advance individual agency practice to target transformation of the system as a whole has been conceptualized but not documented. A grassroots effort to build a TICWS with key participants (e.g., Department of Human Services, Community Mental Health, Family Court, schools) in nine Michigan communities provides a field tested model for implementation. This article described what emerged as the core elements for a TICWS, which includes (1) development and support of a project champion, (2) trauma identification, (3) comprehensive assessment of traumatic impact, (4) evidence based trauma treatment, (5) establishing a common trauma language, and (6) trauma-informed decision-making. Several new instruments for assessing aTICWS are identified. Lessons learned are highlighted for consideration of communities seeking to develop TICWSs.

Implementing Trauma-Informed Practice in Juvenile Justice Systems: What can Courts Learn from Child Welfare Interventions?

Many youth entering juvenile court systems show manifestations of psychological trauma. Focusing on rural juvenile courts, systems with greatly underserved and under-researched populations, we assessed practices, barriers, and recommendations around trauma-informed practice, an evidence-based approach for addressing trauma and reducing delinquent behavior and recidivism. As part of a pilot trauma-informed practice initiative at four rural Michigan juvenile courts, semi-structured qualitative interviews were conducted with 15 court staff, including probation officers, referees, judges, and on-site clinical therapists. Respondents expressed an ideological affinity for trauma-informed practice, describing growing inclinations to rely on referral-making around mental health treatment in lieu of traditional (punitive) sentencing. Key implementation barriers included limited access to local mental health resources, insufficient buy-in from K-12 schools, government, and police, and concerns over professional abilities/boundaries. Respondents recommended additional technical trainings on trauma-informed practice and cross-disciplinary education for clients' families and external stakeholders.

A clinical trial of a rehabilitation expert clinician versus usual care for providing manual wheelchairs.

OBJECTIVES: To determine the effect of differing methods of dispensing wheelchairs. DESIGN: Quasi-experimental by day of week. SETTING: Department of Veterans Affairs Medical Center. PARTICIPANTS: Eighty-four community-dwelling, cognitively intact patients prescribed a standard manual wheelchair. INTERVENTION: A multifactorial intervention consisting of an expert physical/occupational therapist who used a scripted evaluation that included an evaluation based on medical record review and self-reported and physical performance measures; individualization of the wheelchair and initiation of orders for additional occupational/physical therapy, equipment, or home modifications as needed; multimodal patient education; and telephone follow-up at 3 and 6 weeks. MEASUREMENTS: The primary outcome was amount of wheelchair use. Secondary outcomes were shoulder pain, wheelchair comfort and confidence, and home modifications. RESULTS: The intervention group had significantly greater wheelchair use than usual care at 2 weeks, 3 months, and 6 months (P=.01). Wheelchair use declined monotonically over time for the entire study sample (P<.001). There were no significant differences between the two groups in shoulder pain, wheelchair comfort or confidence, or home modifications. CONCLUSION: New wheelchair owners used the wheelchair more often if they received it from an expert therapist using a multifactorial intervention.

Is Irish set dancing feasible for people with Parkinson's disease in Ireland?

OBJECTIVE: To investigate if community-based Irish set dancing is feasible in Irish adults with Parkinson's disease. METHODS: Over an eight week period, ten participants attended one set dancing class per week and completed a home programme in parallel. Feasibility was assessed by monitoring adverse effects, participants' verbal feedback, compliance rates and feedback from an exit questionnaire. Participants were assessed using the Berg balance scale, 6-min walk test, UPDRS-3 and PDQ-39, before and after the intervention. RESULTS: No adverse effects were detected. Attendance at classes was 86%. Compliance with the home programme was 67%. Findings from the exit questionnaire showed participants enjoyed participating and reported improvements in aspects of health including balance. Quality of life improved with the dance programme and there was a trend toward improvement on the UPDRS-3. CONCLUSION: These findings suggest community-based Irish set dancing is a feasible form of exercise that can positively influence quality of life.

Late lower arch crowding: the aetiology reviewed.

This article reviews the causes of the crowding that commonly occurs, particularly in the lower arch, after eruption of the second permanent molars. Factors discussed include mesially directed forces, in treated and untreated subjects, distally directed forces, occlusal changes, direction of eruption, tooth morphology, periodontal forces, and degenerative connective tissue changes.

Insights into the experiences of older workers and change: through the lens of selection, optimization, and compensation.

PURPOSE: The study examined the barriers faced, the goals selected, and the optimization and compensation strategies of older workers in relation to career change. METHOD: Thirty open-ended interviews, 12 in the United States and 18 in New Zealand, were conducted, recorded, transcribed verbatim, and analyzed for themes. RESULTS: Barriers to finding and maintaining work included task difficulty, problems with coworkers and management, lack of self-confidence, health/physical limitations, ageism, and stereotyping. Respondents' most frequently selected goals for a new career were the desire to help others, work satisfaction, and acquisition of learning. Seventy-five percent of respondents in paid employment had earning an income as a goal. Optimization strategies included drawing on past experience, assessing skills, seeking careers/organizations that fitted their values, and a willingness to accept lower pay or unpaid work. Attitudinal strategies included focus and persistence, optimism, and positive attitudes toward change. The compensation strategies reported were on-the-job training; help from coworkers, clients, or customers; friends and family social support; and professional networks. Management practices considered helpful were flexible work schedules, supervisors' patience, and formal recognition of the value of older workers. CONCLUSION: This qualitative study, using the SOC framework, showed that evaluating one's skills and values, being positive about change, and being part of a supportive work environment were key contributors to adaptive competence.

Sudoscan, a noninvasive tool for detecting diabetic small fiber neuropathy and autonomic dysfunction.

OBJECTIVE: Sudomotor dysfunction may be an early detectable abnormality in diabetic small fiber neuropathy. The aim of this study was to evaluate the efficacy of Sudoscan™ (Impeto Medical, Paris, France) in detecting diabetic neuropathy (DN), in comparison with other standardized tests, in patients with diabetes mellitus (DM). SUBJECTS AND METHODS: Sudoscan measures electrochemical skin conductance (ESC) of hands and feet through reverse iontophoresis. We evaluated 83 DM patients with and without DN and 210 healthy controls (HCs). Neuropathy Impairment Score-Lower Legs (NIS-LL), quantitative autonomic function testing (QAFT), and quantitative sensory testing (QST) were performed. Symptomatic pain was recorded using a visual analog scale. Receiver-operator characteristic (ROC) curves were calculated to evaluate the efficacy of Sudoscan in detecting DN compared with traditional modalities. RESULTS: Diabetes patients with DN had significantly worse ESCs of feet and hands than DM patients without DN and HCs (respectively, 56.3±3 vs. 75.9±5.5 and 84.4±0.9 [P<0.0001] for feet and 51.9±2.4 vs. 67.5±4.3 and 73.1±0.8 [P<0.0001] for hands). Increasing NIS-LL scores were associated with decreasing ESC values. ESCs correlated significantly with clinical (NIS-LL), somatic (QST), and autonomic (QAFT) measures of neuropathy and with pain scores. ROC curve analysis showed significant results for both hands and feet ESC (area under the curve of 0.86 and 0.88, respectively; P<0.0001) with sensitivity of 78% and specificity of 92% for feet to detect DN. CONCLUSIONS: Sudoscan is a promising, sensitive tool to detect neuropathy in patients with DM. This is a very simple, easy-to-perform test that can be done in the clinical setting in 3-5 min.