Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis.

BACKGROUND: About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Detailed analysis of how this safety-critical care can be improved has not been undertaken. Understanding context, contributory factors and events leading to incidents is essential. AIMS: (1) Understand continuous subcutaneous infusion safety incidents and their impact on patients and families; (2) Identify targets for system improvements by learning from recurrent events and contributory factors. DESIGN: Following systematic identification and stratification by degree of harm, a mixed methods analysis of palliative medication incidents involving continuous subcutaneous infusions comprising quantitative descriptive analysis using the PatIent SAfety (PISA) classification system and qualitative narrative analysis of free-text reports. SETTING/PARTICIPANTS: Palliative medication incidents (n = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021). RESULTS: About 1317/7506 incidents involved continuous subcutaneous infusions with 943 (72%) detailing harms. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%). Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified. CONCLUSIONS: System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care. Training is needed to improve incident descriptions so these pinpoint precise targets for safer care.

Appropriateness of the EQ-5D-5L in capturing health-related quality of life in individuals with transfusion-dependent ß-thalassemia: a mixed methods study.

BACKGROUND: Individuals with transfusion-dependent ß-thalassemia (TDT) experience symptoms and functional impacts that reduce their health-related quality of life. However, EQ-5D-derived health utility index scores in TDT often indicate good HRQoL, suggesting the EQ-5D may not adequately capture the impact of TDT. This study explored the disease and treatment burden of TDT and examined the appropriateness of the EQ-5D-5L descriptive system (DS) in measuring HRQoL in TDT. METHODS: Adults with TDT in the United Kingdom, United States, and France completed a background questionnaire and EQ-5D-5L DS, followed by 60-minute semi-structured interviews on symptoms and HRQoL impacts of TDT (concept elicitation) and appropriateness of EQ-5D-5L DS (cognitive debrief). Transcribed interviews were analyzed using thematic and content analyses. The relationship between TDT symptoms and impacts were summarized in a conceptual model. EQ-5D-5L DS was mapped to concepts identified in the qualitative data to assess its capture of HRQoL concepts. Participants' EQ-5D-5L DS scores were compared to their qualitative descriptions for each dimension to assess their concordance. RESULTS: Thirty participants in the United States (n = 14 [46.7%]), United Kingdom. (n = 12 [40.0%]), and France (n = 4 [13.3%]) completed the study (73.3% female; mean age = 28.4 years [standard deviation (SD) = 5.1]; mean annual red blood cell transfusion [RBCT] frequency = 18.4 [SD = 7.6]). Participants reported TDT symptoms and impacts on HRQoL, all fluctuating across the RBCT cycle. EQ-5D-5L DS did not fully capture 11 of 16 (68.8%) HRQoL concepts reported. Most participants (n = 20/27 [74.1%]) reported that EQ-5D-5L DS did not capture important aspects of living with TDT, and 42.9% (n = 12/28) reported negative/neutral overall impressions of EQ-5D-5L DS. The highest degree of discordance between participants' qualitative data and EQ-5D-5L DS dimension scores was observed with mobility (42.3%) and self-care (34.6%), where the qualitative descriptions relating to these dimensions were worse than their quantitative scores. CONCLUSION: Current findings suggest that EQ-5D-5L DS lacks content validity and the derived health utility index score may not fully represent the burden of disease in TDT.

Perceived Loneliness, Social Isolation, and Social Support Resources of Frail Older People Ageing in Place Alone in Italy.

This paper presents some findings from the IN-AGE ("Inclusive ageing in place") study, which the authors carried out in 2019 in Italy. It explores the available social support resources for frail older people with functional limitations ageing in place alone, and possible links between their social isolation and perceived loneliness. The authors conducted qualitative/semi-structured interviews involving 120 participants aged 65 years and over, and used a mixed-methods analysis (quantitative/qualitative). The main results show the family as the main help resource for daily activities, but also for intimate confidences against social isolation, especially when said relatives live close. Family confidants are less present when seniors are supported by friends/neighbours or/and public services. Moreover, the family is valuable for decreasing loneliness, although not always. However, some older people feel particularly alone when they are supported by public services. Such a complex context draws attention on the need of support for frail seniors living alone and could provide insights for policymakers on adequate policies for preventing and managing loneliness and social isolation in later life. This is especially relevant when family (and other) resources are not available or scarce, also considering the opportunities offered by technology, which can help seniors remain socially connected to relatives, friends and their overall community.

Acceptability of a Self-Guided Lifestyle Intervention Among Young Men: Mixed Methods Analysis of Pilot Findings.

BACKGROUND: Young men are vastly underrepresented in lifestyle interventions, suggesting a need to develop appealing yet effective interventions for this population. OBJECTIVE: This study aimed to determine the acceptability of a self-guided lifestyle intervention designed specifically for young men (age: 18-35 years old). METHODS: Semistructured interviews and surveys were completed by 14 men following completion of a remotely delivered, 12-week lifestyle intervention. The intervention included 1 virtual group session, digital tools, access to self-paced web- and mobile-based content, and 12 weekly health risk text messages. We quantitatively and qualitatively examined young men's experiences with the intervention components of a remotely delivered, self-guided lifestyle intervention targeting weight loss. Data were integrated using convergent mixed methods analysis. RESULTS: Men were a mean age of 29.9 (SD 4.9) years with a mean BMI of 31.0 (SD 4.5) kg/m2. The self-guided aspect was not acceptable, and a majority preferred more check-ins. Participants expressed a desire for a social aspect in future lifestyle interventions. All men found the focus on health risks appealing. A majority of men found the study-issued, Bluetooth-enabled scale acceptable. CONCLUSIONS: Acceptability of the self-guided lifestyle intervention was perceived as suboptimal by young men. The findings highlight the need to add intervention components that sustain motivation and provide additional social support for young men. TRIAL REGISTRATION: ClinicalTrials.gov NCT04267263; https://www.clinicaltrials.gov/study/NCT04267263.

Patient Perceptions of Care Coordination during Neoadjuvant Therapy for Gastrointestinal Cancers: A Mixed Methods Analysis.

PURPOSE: Effective cancer care coordination (CCC) is an integral component of health care delivery and critical to achieving optimal oncologic outcomes. Neoadjuvant therapy (NT), the delivery of multimodality therapy prior to surgery, is inherently complex and multidisciplinary, but CCC during NT is poorly understood. The objective of this study was to characterize patient perceptions of CCC during NT using a mixed methods approach. METHODS: This study is a cross-sectional analysis of patients with gastrointestinal cancers receiving NT who participated in a prospective longitudinal cohort study evaluating their real-time experience using a customized smartphone application. Patients completed the Cancer Care Coordination Questionnaire for Patients (CCCQ-P), a 20-item validated measure of care coordination quality, six weeks after initiating NT. Items were scored on a 5-point Likert scale, and subsections on communication (13 questions) and navigation (7 questions) were calculated with higher scores signifying better CCC. Univariate linear regression was used to calculate the impact of fragmented care and other factors on perceived CCC. Semi-structured interviews were conducted among a convenience sample of patients (n = 5); transcribed interviews were then coded using an inductive approach. RESULTS: Among 82 participants, mean age was 61 years old, 68% were male, and mean number of comorbidities was 1.68. Overall (mean 76.6 out of 100), communication subsection (48.6 out of 65), and navigation subsection (28.0 out of 35) CCCQ-P scores suggested overall positive perceptions of care coordination. Qualitative analysis of patient interviews highlighted the need for coordination among physicians before communicating the plan to patients as well as the importance of providers communicating plans in verbal and written form. CONCLUSIONS: Successful completion of NT requires significant care coordination between patients and healthcare professionals. Yet, in this cross-sectional analysis of patients on a prospective cohort study, patient perceptions of CCC during NT were overall positive. Future research should focus on optimizing other aspects of care delivery in order to improve outcomes of NT.

Qualitative Analysis of Patient Experiences Reaching Urethroplasty for Recurrent Urethral Stricture Disease.

PURPOSE: Despite the inferior outcomes, urethral stricture patients often undergo multiple endoscopic procedures prior to undergoing definitive urethroplasty. We sought to qualitatively evaluate the patient experience of obtaining urethroplasty to better understand the impact of this experience on quality of life. MATERIALS AND METHODS: Patients treated with urethroplasty between September 2019 and July 2021 were identified and invited to participate in our study if they had undergone ≥ 2 endoscopic procedures prior to urethroplasty. Semistructured telephone interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach. RESULTS: Of the 105 urethroplasty patients during the study period, 50 (47.6%) had undergone ≥ 2 endoscopic procedures prior (IQR 3-5), of whom 20 participated in the study. Qualitative themes related to repeat endoscopic procedures included unmet treatment expectations, dissatisfaction with catheterization and repeat procedures, and negative impacts of recurrent stricture symptoms and treatments on quality of life. External factors associated with a delay to urethroplasty included financial constraints, surgeon access, and time off work. CONCLUSIONS: A trajectory of declining quality of life and unmet treatment expectations are the primary factors driving the decision to proceed with urethroplasty. However, external factors such as recovery costs and access to specialists play important roles in delaying surgery. These findings illustrate the need for improved community provider education and patient counseling to better inform expectations of both patients and providers with various treatment outcomes. Furthermore, these data highlight the need to improve access to specialized care for urethral stricture patients.

"Working Together": Perspectives of Healthcare Professionals in Providing Virtual Care to Youth with Chronic Pain during the COVID-19 Pandemic.

BACKGROUND: The onset of the coronavirus disease in 2019 necessitated a rapid transition to virtual care for chronic pain treatment. METHODS: A mixed methods design was implemented using qualitative interviews and quantitative satisfaction surveys. Interviews were conducted in February 2021 with a sample of healthcare professionals (HCPs; n = 6) who had provided multidisciplinary treatment (MDT) through an outpatient hospital pediatric chronic pain program. Satisfaction surveys were distributed to all MDT professionals employed by the clinic in April 2021 (n = 13 of 20 eligible; 65% response rate). Participants represented medicine, rehabilitation, and mental health professionals. RESULTS: Analysis of interviews generated five themes: (1) adaptation to virtual care, (2) benefits of virtual care, (3) limitations of virtual care, (4) shifting stance on virtual care over time, and (5) considerations for implementing virtual care. The satisfaction survey data revealed that respondents were able to effectively provide appropriate diagnoses, recommendations, and/or care plans for pediatric chronic pain via virtual care (n = 12, 92.3%). Detailed survey responses are presented by discipline. CONCLUSIONS: This study provides a rich exploration of HCPs' experiences in providing MDT for pediatric chronic pain within a virtual care model. The current results may contribute to the future development of guidelines for virtual care delivery with pediatric chronic pain populations.

Exploring Gender Differences in Adult Siblings' Recollections on Perinatal Loss.

This study is an exploration on potential gender differences in sibling grief over perinatal loss. 30 adult siblings' recollections were analysed to identify possible differences along the instrumental-intuitive continuum. A statistical analysis (ANOVA) on word frequencies indicated that the intensity of the emotional experiences did not differ between men and women, as there were not any significant differences in the function words reflecting such contents. Women referred to third persons, the delivery process, and the act of naming their deceased siblings more frequently. A subsequent qualitative context analysis revealed that these third persons were mainly family members and hospital staff. Men were more specific in their recollections, mentioning exact names and other types of data related to the loss while women focused more on the emotional significance of the experience. Our results may contribute to the development of personalized interventions for families struggling with disenfranchised grief.

Virtual multidisciplinary pain treatment: Experiences and feedback from children with chronic pain and their caregivers.

BACKGROUND: The onset of the coronavirus disease 2019 (COVID-19) necessitated a rapid transition to virtual care for chronic pain treatment. OBJECTIVE: This study examined experiences of patients and caregivers who received virtual multidisciplinary pain treatment (MDT) for pediatric chronic pain between March 2020 and August 2021. METHODS: A mixed methods design was implemented using qualitative interviews and quantitative satisfaction surveys. Satisfaction surveys were administered to a convenience sample of patients (aged 8 to 18; N = 20) and their caregivers (N = 20) who received MDT through an outpatient hospital pediatric chronic pain program. Interviews were conducted with a subset of these patients and their caregivers (n = 6). RESULTS: Analysis of interviews revealed four themes: 1) benefits of virtual care; 2) challenges of virtual care; 3) recommendations and evaluation of virtual care; and 4) patient preferences. Analysis of the satisfaction survey data revealed that while patients and caregivers were satisfied with many aspects of virtual care, 65% (n = 13) of patients reported a preference for in-person appointments, with caregivers showing equal preference for in-person and virtual appointments, though this was a non-significant difference (p = .37). Overall, both patients and caregivers stated a stronger preference for in-person physiotherapy sessions but were willing to have psychology sessions provided virtually. Finally, the most reported preference was for a hybrid model of care incorporating at least some in-person contact with providers. CONCLUSION: This study provides a rich exploration of virtual care for multidisciplinary pediatric chronic pain treatment. The current results may inform the future development of guidelines for virtual care delivery with pediatric chronic pain populations.

Self-reported mental well-being of mothers with young children during the first wave of the COVID-19 pandemic in Germany: A mixed-methods study.

OBJECTIVES: Mothers of young children have been identified as a particularly vulnerable group during the COVID-19 pandemic. We aimed to explore how occupational, psychosocial and partnership-related factors were associated with their self-reported mental well-being during the first COVID-19 wave. METHODS: Five hundred fifty participants of the BaBi cohort study (est. 2013, Bielefeld, North-Rhine Westphalia, Germany) were invited to complete an online survey and to take part in email interviews (April-May 2020). With survey data, we assessed self-reported mental well-being through validated instruments (eight-item Patient Health Questionnaire; short version of the Symptom Checklist) and ran linear regression models for occupational, psychosocial and partnership-related factors. We performed content analysis on the interviews' data to further understand the determinants of the women's mental well-being. RESULTS: One hundred twenty-four women participated in the survey; of which 17 also participated in the interviews. A perceived lack of support in childcare was associated with higher levels of depressive symptoms, while having a higher internal locus of control was associated with lower levels. Psychological distress was higher in those reporting lack of emotional or childcare support. Interviews confirmed the interplay of potential stressors and highlighted the difficulties to reconcile different expectations of motherhood. DISCUSSION: Occupational, psychosocial and partner-related factors can act (to varying degree) both as resources and stressors to the self-reported mental well-being of mothers of young children. These impacts took different forms and created opportunities or challenges, depending on specific life circumstances, such as work or family situations, relationships and own psychosocial resources. Although not representative, our study contributes to building the COVID-19 evidence base, delineating the mental health toll of the pandemic on mothers of young children and the factors that contribute to it.

The 'sugar tax' in Bermuda: a mixed methods study of general population and key stakeholder perceptions.

BACKGROUND: Taxes on discretionary foods and sugar-sweetened beverages have emerged as a strategy for health promotion. Between 2018-2019, the Bermuda government introduced a phased tax on imported sugar-sweetened beverages, confectionery, products containing cocoa and pure sugar, and eliminated import duties on select healthy food items. The aim of this study was to conduct an mixed methods evaluation of perceptions of the tax among the general population and key stakeholders. METHODS: We conducted a survey of the general population (N = 400), and semi-structured interviews with key informants (N = 14) from the government, food and beverage, and health sectors to understand awareness, acceptability, and perceived impact of the tax after implementation. Survey data was analysed using thematic analysis, summary statistics, and Chi-squared tests. Key informant interviews were analysed using the framework method. RESULTS: General population respondents had high awareness of the sugar tax (94%) but low awareness of the healthy food subsidy (32%). Most respondents (67%) felt the tax was not an appropriate way to motivate healthier consumption due to beliefs the tax would not be effective (44%), and because of the high price of healthy food (20%). However, nearly half (48%) reported consuming fewer taxed products, primarily for health reasons but also motivated by price increases. Key informants indicated there was high awareness but limited understanding of the tax policy. Informants expressed support for taxation as a health promotion strategy, conditional on policy implementation. The lack of clear price differentiation between taxed and un-taxed products and the absence of accompanying health education were key factors believed to affect the impact of the tax. No informants were aware of use of tax revenues for health purposes and tax revenue was reportedly re-directed to other priorities after implementation. CONCLUSIONS: There was high awareness, but limited acceptability of the Bermuda sugar tax as implemented. Clarity in the tax policy, appropriateness of the tax mechanism, and use of revenue in alignment with the tax aim are critical components for acceptance. The absence of complementary education and health promotion affected acceptance and may limit potential health impacts. The lessons learned in Bermuda can inform similar policies in other settings.

Anxiety and depression in patients with intracranial meningioma: a mixed methods analysis.

BACKGROUND: While diagnosis with a high-grade intracranial tumor is known to be associated with increased psychosocial burden, the burdens associated with meningioma are less well described. This study aimed to investigate the mental health burden in patients with meningiomas who have undergone surgical resection or serial observation, so as to identify and enhance awareness of gaps in care. METHODS: The Hospital Anxiety and Depression Scale (HADS) was administered to participants. Fisher's Exact tests were performed to evaluate frequency distributions and t-tests were applied to compare postoperative and non-surgical patients' HADS scores. Semi-structured interviews were completed on a subset of participants. Thematic analysis of interviews identified emerging themes. RESULTS: Thirty patients with intracranial meningiomas met inclusion criteria. The cohort's mean age was 56.01 years and 66.67% were women (n = 20). Fourteen underwent surgery; sixteen were treated conservatively with observation. The average time since diagnosis of the sample was 37.6 months. Prevalence of mild to severe symptoms of anxiety was 28.6% amongst surgical management patients and 50% for active surveillance patients (p = 0.325). The prevalence of mild to severe symptoms of depression was 7.14% amongst surgical management patients and 6.25% for active surveillance patients (p = 0.533). Emerging themes from eight interviews reveal the influence of resilience, uncertainty and time, social support, interactions with medical experts, and difficulties during recovery on mental health. CONCLUSION: The findings from the present study reveal that patients with meningiomas experience a significant mental health burden, illustrating the need for enhanced patient-centred care focusing on mental health.

Enhancing demographic survey protocols to characterise household dynamics that influence health - a participatory approach from rural Eswatini.

Standard Western demographic survey protocols fail to capture dynamics, such as circular migration and support networks, that profoundly influence the health of non-Western domestic social groups, typically called households. Enhanced protocols are needed because survey data provide the primary evidence base for health policy and planning globally. We present the participatory development, implementation and analysis of a novel demographic survey protocol, that aimed to better capture domestic social dynamics in rural Eswatini, southern Africa. The multiple-method study incorporated participatory health research about a community affected by HIV/AIDS, of which the survey formed part, and an ethnography of the participatory survey development process. Analysis of the data revealed limitations in the reliability and validity of standardised survey questions for measuring household membership, in contexts where circular migration and polygamy are common. Standard survey protocols potentiate double-counting members and misclassifying 'child-headed' and 'female-headed' households. They neglect social and economic dynamics that are known to influence health. Our novel demographic survey protocol provides a simple alternative method for capturing core data about circular migration and its impact on health. The study illustrates the contributions participatory and ethnographic research can make to enhancing demographic surveys.

An Online, Modular Curriculum Enhances Surgical Education and Improves Learning Outcomes in East, Central, and Southern Africa: A Mixed-Methods Study.

Objective: We aimed to determine the impact of a standardized curriculum on learning outcomes for surgical trainees in East, Central, and Southern Africa (ECSA). Background: As surgical education expands throughout ECSA, there is a recognized need for a standardized curriculum. We previously described the design of a novel, large-scale, flipped-classroom, surgical curriculum for trainees in ECSA. Methods: In January 2020, the first year of curricular content for trainees of the College of Surgeons of ECSA was released, containing 11 monthly thematic topics, each with 2 to 5 weekly modular subtopics. We aimed to evaluate 3 outcomes utilizing data sources incorporated into the curriculum structure. Learner engagement was assessed by the number of trainees completing curriculum topics. User experience was evaluated using quantitative and qualitative feedback responses to embedded surveys for each content week. Curriculum impact on trainee examination performance was assessed by comparing certification examination scores stratified by the number of curricular topics each trainee completed. Results: Two hundred seventy-one trainees (96%) in 17 countries accessed at least 1 weekly module. Trainees completed a median of 9 topics (interquartile range: 6-10). The feedback survey response rate was 92% (5742/6233). Quantitative and qualitative responses were positive in overall module value (93.7% + 2.6%), amount of learning experienced (97.9% + 1.4%), confidence in achieving learning objectives (97.1% + 2.4%), and ease of use of the module (77.6% + 5.98%). Topic-related certification examination performance improved significantly with increased completion of thematic topics. Conclusions: A standardized surgical curriculum in ECSA demonstrated excellent trainee usage, positive feedback, and improved examination scores.

Development of a Video-Observed Therapy System to Improve Monitoring of Tuberculosis Treatment in Thailand: Mixed-Methods Study.

BACKGROUND: Directly observed therapy programs for monitoring tuberculosis (TB) treatment in Thailand are unsustainable, especially during the COVID-19 pandemic. The current video-observed therapy (VOT) system, the Thai VOT (TH VOT), was developed to replace the directly observed therapy program. OBJECTIVE: This study aimed to describe the VOT system design and identify the potential for system improvements. METHODS: This pilot study was conducted in Na Yong district, a small district in Trang province, south of Thailand. The TH VOT system consists of a smartphone app for patients, a secured web-based platform for staff, items used, and standard operating procedures. There were three groups of users: observers who were TB staff, healthy volunteers as simulated patients, and patients with active TB. All participants were trained to follow the standard operating procedures. After 2-week usage, VOT session records were analyzed to measure the compliance of the patients and observers. The User Experience Questionnaire was used to lead the participant users to focus on 6 standard dimensions of usability, and was supplemented with an in-depth interview to identify potential system improvements from users' experience. RESULTS: Only 2 of 16 patients with currently active TB had a usable smartphone. Sixty of 70 drug-taking sessions among 2 patients and 3 simulated patients in 2 weeks were recorded and uploaded. Only 37 sessions were inspected by the observers within 24 hours. All participants needed a proper notification system. An audit system was also requested. CONCLUSIONS: Before upscaling, the cost of smartphone lending, audit management, and notification systems should be elucidated.

Types of Utilization and Types of Treatment Response in a Collaborative Care Approach for Depressive Disorders in Old Age in Primary Care.

Background: Treatment of depressive disorders in old age is hindered by several barriers. Most common are time pressure in primary care and latency for specialized therapeutic care. To improve treatment, the collaborative care approach GermanIMPACT was evaluated in a cluster-randomized controlled trial. Care managers offered a complex stepped-care intervention of monitoring, psychoeducation, and behavioral activation techniques. Twenty-six percent of the intervention group responds with a remission of depressive symptoms compared with 11% who received treatment as usual (TAU). The low-threshold intervention was more successful than TAU. Nevertheless, three-quarters did not respond with a remission. The aim of this study is to identify and describe the different types of utilization and of treatment response to understand what constitutes an effective intervention. Methods: Of 64 patients from the intervention group, we carried out problem-centered interviews with 26 patients from the intervention group. We analyzed the interviews using a qualitative type-building content analysis. For type construction, we performed a contrasting case comparison, regarding inductive and deductive categories of the intervention utilization and the symptom development. Results: The 26 participants' ages ranged from 62 to 87 years (mean = 72 years). Three participants were male. We identified five types of utilization, which differ primarily in the realization of pleasant activations, depending on own activity at the beginning and during the therapy: "activatable relief seekers," "active relief seekers," "active relaxation seekers," "passive problem-solving seekers," and "passive relief seekers." In the second typology, we analyzed four deductively determined types of treatment response responders, slight improvers, constant moderates, and non-responders. Patient-specific characteristics are a recent history of depression, an affinity for activities, supportive contacts, and limited comorbidity. In contrast, non-responders report contrary characteristics. Conclusion: Our two typologies emphasize that an effective intervention requires a match between intervention components and patient characteristics. We saw no intersections between utilization and treatment response. GermanIMPACT is an effective low-threshold intervention for moderately burdened patients, who are still capable of self-activation. An expansion of the intervention, especially for depression with a long history and comorbidities impairing mobility, could increase the effectiveness and improve the care situation of older people suffering from depression.

Profiling guide dog handlers to support guide dog matching decisions.

Purpose: This Australian study piloted a new measure of Orientation and Mobility to better understand the functional mobility of guide dog handlers with low vision or blindness. It is expected that this measure can be used to better match guide dogs to their handlers.Materials and methods: The new Orientation and Mobility Outcomes tool scores a client in Stable/Familiar and Dynamic/Unfamiliar conditions, also considering Travel-Related Wellbeing. Semi-structured interviews were conducted with 51 guide dog handlers, during which travel skills were co-rated with an interviewer.Results: A cluster analysis of the Orientation and Mobility Outcomes data identified four mobility styles: intrepid explorers, social navigators, independent roamers and homebodies. The differences between these clusters had more to do with mental mapping skills than level of vision, and different guide dog characteristics were needed to support the travel styles identified for each cluster.Conclusions: The results confirm the importance of the Orientation and Mobility Outcomes tool as a sensitive, person-centred measure of the impact of Orientation and Mobility and guide dog training. In particular, the four mobility clusters provide a new perspective on matching guide dogs with clients, also suggesting the need for a more personalised look at the guide dog training process.Implications for RehabilitationOrientation and Mobility Outcomes data seem precise enough to support and inform the process of matching guide dogs to handlers.Uniform results cannot be expected from guide dog mobility in handlers - age, stage of life, health and spatial cognition impact the competence and travel style of guide dog handlers, whereas vision is less important.Sharing the work of visual interpretation and decision making with a guide dog makes independent travel more possible.Valuable dog characteristics that are specific to handler requirements might be bred or trained from puppy raising onwards, creating a more diverse pool of dogs to draw upon.

'I hate wasting the hospital's time': Experiences of emergency department admissions of Australian people with epilepsy.

AIM: This paper investigates the reasons and extent of hospital emergency department (ED) attendance by people with epilepsy in Wave 4 of The Australian Longitudinal Survey 2016-17. METHOD: Wave 4 had 393 respondents who completed the survey, which included questions relating to their use of hospital and healthcare services. Of these, 121 (31%; 82 females) reported one or more admissions to the ED within the previous 12 months. We conducted a mixed methods analysis - using quantitative measures to explore the type and number of admissions, factors relating to increased admissions, and a qualitative approach to explore respondent experiences of their admissions. RESULTS: Over half of the admissions reported were seizure-related, including injuries occurring as a result of seizures. More than 15% of respondents had more than four ED visits during the preceding 12 months of the survey. Those who had experienced seizures within the previous 12 months, irrespective of frequency, were more likely to have attended the ED compared with those who had not experienced a recent seizure. Self-reported income was another major factor in ED use. Experiences of hospitalization demonstrated frustration at being taken to the ED, loss of autonomy, and experiences of inappropriate care due to poor understanding of epilepsy. Some respondents did not want to waste the ED time as they felt that a rest was all they needed following a seizure. DISCUSSION: The rates of hospitalization for seizure-related reasons are in line with the findings of other epilepsy-related studies, as is the increased hospitalization rate of those from less well-off backgrounds. This study provided a valuable picture of the opinions and attitudes of people with epilepsy towards their healthcare services. CONCLUSION: While this is an analysis of a small cohort, the consistency of reported experiences suggests that ED is not always felt to be appropriate following a seizure, and misunderstanding around the appropriate treatment of epilepsy continues in healthcare services.

A qualitative study exploring views and experiences of people with stroke undergoing transcranial direct current stimulation and upper limb robot therapy.

Background Neurorehabilitation technologies used mainly in research such as robot therapy (RT) and transcranial direct current stimulation (tDCS) can promote upper limb motor recovery after stroke. Understanding the feasibility and efficacy of stroke rehabilitation technologies for upper limb impairments is crucial for effective implementation in practice. Small studies have explored views of RT by people with stroke; however experiences of people receiving tDCS in combination with RT have never been explored. Objective To explore views and experiences of people with sub-acute and chronic stroke that had previously taken part in a randomised controlled trial involving tDCS and RT for their impaired upper limb. Methods An interview study includes open and closed questions. Face-to-face interviews were audio recorded. Open-ended question responses were transcribed and analyzed using thematic analysis; closed questions were analyzed using descriptive analysis. Results Participants felt that RT was enjoyable (90%) and beneficial for their affected arm (100%). From the open question data, it was found that the intervention was effective for the impaired arm especially in the sub-acute stage. Main reported concerns were that tDCS caused painful, itching and burning sensations and RT was sometimes tiring and difficult. Participants recommended that future research should focus on designing a more comfortable method of tDCS and develop a robot that promotes hand movements. Conclusions This study provides new knowledge about the benefits and barriers associated with these technologies which are crucial to the future effective implementation of these tools in practice.

Amor and Social Stigma: ASD Beliefs Among Immigrant Mexican Parents.

This study examined cultural beliefs about ASD and its causes among Mexican-heritage families. In focus group interviews, we asked 25 immigrant parents of children with ASD to identify words they associated with ASD and its causes. Participants free-listed, ranked, and justified their responses. Mixed methods analyses utilized saliency scores to calculate responses. Deductive interview analyses justified participants' responses. Salient responses for ASD perceptions included specific characteristics about the child (e.g., loving) and perceptions about lack of resources. Salient responses for ASD causes were vaccines, genetics, and a combination of genetics and environment. Inductive analyses revealed distinct beliefs about social stigma, child characteristics, factors supporting development, and parents' emotional stress. Interpretations linked these beliefs to promising adaptations in diagnosis and treatment.