scholarly journals The Views and Needs of People With Parkinson Disease Regarding Wearable Devices for Disease Monitoring: Mixed Methods Exploration

10.2196/27418 ◽  
2022 ◽  
Vol 6 (1) ◽  
pp. e27418
Author(s):  
Lorna Kenny ◽  
Kevin Moore ◽  
Clíona O' Riordan ◽  
Siobhan Fox ◽  
John Barton ◽  
...  

Background Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities. Objective This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management. Methods This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach. Results Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption. Conclusions Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease–related health barriers and the users’ confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management.

2021 ◽  
Author(s):  
Lorna Kenny ◽  
Kevin Moore ◽  
Clíona O' Riordan ◽  
Siobhan Fox ◽  
John Barton ◽  
...  

BACKGROUND Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities. OBJECTIVE This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management. METHODS This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach. RESULTS Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption. CONCLUSIONS Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease–related health barriers and the users’ confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management.


2018 ◽  
Vol 17 (1) ◽  
pp. 160940691775078 ◽  
Author(s):  
Rachel Flynn ◽  
Lauren Albrecht ◽  
Shannon D. Scott

This article discusses four challenges to conducting qualitative focus groups: (1) maximizing research budgets through innovative methodological approaches, (2) recruiting health-care professionals for qualitative health research, (3) conducting focus groups with health-care professionals across geographically dispersed areas, and (4) taking into consideration data richness when using different focus group data collection methods. In light of these challenges, we propose two alternative approaches for collecting focus group data: (a) extended period of quantitative data collection that facilitated relationship building in the sites prior to qualitative focus groups and (b) focus groups by videoconference. We share our experiences on employing both of these approaches in two national research programs.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
C Harrison ◽  
J Boivin ◽  
G Sofia

Abstract Study question How is possibility of failure and potential need for multiple cycles discussed with patients during the first or repeat IVF/ICSI treatment consultation? Summary answer Health Care Professionals plan treatment on a cycle-by-cycle basis because it is the normative way to plan treatment, but patients see advantages in multi-cycle planning. What is known already Many patients need more than one round of IVF/ICSI stimulation to achieve their parenthood goals. A recent study has found around 60% of patients to be willing to plan for multiple cycles of treatment. However, it is not clear how patients are informed fully about the high possibility of treatment failure and the subsequent need for multiple cycles during their treatment planning consultations. Study design, size, duration Qualitative focus groups with health care professionals (HCP) patient advocates (April 2020) and patients (July and August 2020, respectively). Patients were eligible if they had had a consultation to start a first/repeat stimulated IVF/ICSI cycle in the eight weeks prior to participation, were aged 18 or older (upper age limit of 42 years for women) and fluent in English. Eligible Health HCPs and patient advocates were those employed at a fertility clinic or charity, respectively. Participants/materials, setting, methods HCP, patient advocate and patient focus group topic guides started with general questions about fertility consultations and progressed to discuss if and how the possibility of treatment failure and need for multiple cycles was introduced and discussed, and then preferences regarding planning IVF/ICSI on a multi-cycle rather than a single cycle basis. Focus groups were recorded, transcribed and analysed using framework analysis which allowed examination of shared, unique and incongruent thematic content across participant groups. Main results and the role of chance Twelve HCPs, 2 patient advocates and 11 patients participated in seven semi-structured online focus group discussions. Framework analysis revealed 52 codes (e.g., possibility of failure tentatively introduced; discussion of multiple cycles dependent on clinical/patient benchmarks) abstracted into 17 higher-level categories (e.g., Failure is a sensitive topic to approach; IVF treatment failure is the norm). Synthesis of categories revealed four themes and one meta theme The meta theme showed planning treatment on a cycle-by-cycle basis was the norm. This meta-theme was supported by four themes: (1) ‘culture of communication’ that dictated benchmarks (e.g., clinic, national live birth rate) and definition of key concepts (’complete’ cycle) that underpinned divergence between clinics; (2) ‘HCP-patient dynamics’ indexing degree of shared decision-making, advance preparation and involvement of partners in planning; (3) ‘tempering optimism’ that described tailoring, balancing and emotion management in giving personal chances of success; and (4) ‘transitioning to multi-cycle planning’ which identified worries of multi-cycle planning (e.g., need to learn from failure). Limitations, reasons for caution The majority of patients were women from private fertility clinics with no previous treatment experience recruited from social media websites, mainly associated with patient support groups. Similarly, the majority of HCPs were women from private fertility clinics. Informative comparisons across treatment stage, gender and funding source were therefore not possible. Wider implications of the findings: HCPs are hesitant towards multi-cycle planning. However, patients show openness, suggesting a cultural shift from the single cycle norm of planning IVF/ICSI may be possible. If adopted by clinics, HCPs patients and fertility organisations, multi-cycle planning could encourage patients to create informed treatment expectations and plans prior to treatment engagemen. Trial registration number MS200059_001


2020 ◽  
Author(s):  
Helen Hawley-Hague ◽  
Carlo Tacconi ◽  
Sabato Mellone ◽  
Ellen Martinez ◽  
Lorenzo Chiari ◽  
...  

BACKGROUND Falls have implications for the health of older adults. Strength and balance interventions significantly reduce the risk of falls; however, patients seldom perform the dose of exercise that is required based on evidence. Health professionals play an important role in supporting older adults as they perform and progress in their exercises. Teleconferencing could enable health professionals to support patients more frequently, which is important in exercise behavior. OBJECTIVE This study aims to examine the overall concept and acceptability of teleconferencing for the delivery of falls rehabilitation with health care professionals and older adults and to examine the usability, acceptability, and feasibility of teleconferencing delivery with health care professionals and patients. METHODS There were 2 stages to the research: patient and public involvement workshops and usability and feasibility testing. A total of 2 workshops were conducted, one with 5 health care professionals and the other with 8 older adults from a community strength and balance exercise group. For usability and feasibility testing, we tested teleconferencing both one-to-one and in small groups on a smartphone with one falls service and their patients for 3 weeks. Semistructured interviews and focus groups were used to explore acceptability, usability, and feasibility. Focus groups were conducted with the service that used teleconferencing with patients and 2 other services that received only a demonstration of how teleconferencing works. Qualitative data were analyzed using the framework approach. RESULTS In the workshops, the health care professionals thought that teleconferencing provided an opportunity to save travel time. Older adults thought that it could enable increased support. Safety is of key importance, and delivery needs to be carefully considered. Both older adults and health care professionals felt that it was important that technology did not eliminate face-to-face contact. There were concerns from older adults about the intrusiveness of technology. For the usability and feasibility testing, 7 patients and 3 health care professionals participated, with interviews conducted with 6 patients and a focus group with the health care team. Two additional teams (8 health professionals) took part in a demonstration and focus group. Barriers and facilitators were identified, with 5 barriers around reliability due to poor connectivity, cost of connectivity, safety concerns linked to positioning of equipment and connectivity, intrusiveness of technology, and resistance to group teleconferencing. Two facilitators focused on the positive benefits of increased support and monitoring and positive solutions for future improvements. CONCLUSIONS Teleconferencing as a way of delivering fall prevention interventions can be acceptable to older adults, patients, and health care professionals if it works effectively. Connectivity, where there is no Wi-Fi provision, is one of the largest issues. Therefore, local infrastructure needs to be improved. A larger usability study is required to establish whether better equipment for delivery improves usability. CLINICALTRIAL


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
C Harrison ◽  
J Boivin ◽  
G Sofia

Abstract Study question How is possibility of failure and potential need for multiple cycles discussed with patients during the first or repeat IVF/ICSI treatment consultation? Summary answer Health Care Professionals plan treatment on a cycle-by-cycle basis because it is the normative way to plan treatment, but patients see advantages in multi-cycle planning What is known already Many patients need more than one round of IVF/ICSI stimulation to achieve their parenthood goals. A recent study has found around 60% of patients to be willing to plan for multiple cycles of treatment. However, it is not clear how patients are informed fully about the high possibility of treatment failure and the subsequent need for multiple cycles during their treatment planning consultations Study design, size, duration Qualitative focus groups with health care professionals (HCP) patient advocates (April 2020) and patients (July and August 2020, respectively). Patients were eligible if they had had a consultation to start a first/repeat stimulated IVF/ICSI cycle in the eight weeks prior to participation, were aged 18 or older (upper age limit of 42 years for women) and fluent in English. Eligible Health HCPs and patient advocates were those employed at a fertility clinic or charity, respectively Participants/materials, setting, methods HCP, patient advocate and patient focus group topic guides started with general questions about fertility consultations and progressed to discuss if and how the possibility of treatment failure and need for multiple cycles was introduced and discussed, and then preferences regarding planning IVF/ICSI on a multi-cycle rather than a single cycle basis. Focus groups were recorded, transcribed and analysed using framework analysis which allowed examination of shared, unique and incongruent thematic content across participant groups Main results and the role of chance Twelve HCPs, 2 patient advocates and 11 patients participated in seven semi-structured online focus group discussions. Framework analysis revealed 52 codes (e.g., possibility of failure tentatively introduced; discussion of multiple cycles dependent on clinical/patient benchmarks) abstracted into 17 higher-level categories (e.g., Failure is a sensitive topic to approach; IVF treatment failure is the norm). Synthesis of categories revealed four themes and one meta theme The meta theme showed planning treatment on a cycle-by-cycle basis was the norm. This meta-theme was supported by four themes: (1) ‘culture of communication’ that dictated benchmarks (e.g., clinic, national live birth rate) and definition of key concepts (‘complete’ cycle) that underpinned divergence between clinics; (2) ‘HCP-patient dynamics’ indexing degree of shared decision-making, advance preparation and involvement of partners in planning; (3) ‘tempering optimism’ that described tailoring, balancing and emotion management in giving personal chances of success; and (4) ‘transitioning to multi-cycle planning’ which identified worries of multi-cycle planning (e.g., need to learn from failure). Limitations, reasons for caution The majority of patients were women from private fertility clinics with no previous treatment experience recruited from social media websites, mainly associated with patient support groups. Similarly, the majority of HCPs were women from private fertility clinics. Informative comparisons across treatment stage, gender and funding source were therefore not possible Wider implications of the findings HCPs are hesitant towards multi-cycle planning. However, patients show openness, suggesting a cultural shift from the single cycle norm of planning IVF/ICSI may be possible. If adopted by clinics, HCPs patients and fertility organisations, multi-cycle planning could encourage patients to create informed treatment expectations and plans prior to treatment engagement Trial registration number MS200059_001


10.2196/19690 ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. e19690
Author(s):  
Helen Hawley-Hague ◽  
Carlo Tacconi ◽  
Sabato Mellone ◽  
Ellen Martinez ◽  
Lorenzo Chiari ◽  
...  

Background Falls have implications for the health of older adults. Strength and balance interventions significantly reduce the risk of falls; however, patients seldom perform the dose of exercise that is required based on evidence. Health professionals play an important role in supporting older adults as they perform and progress in their exercises. Teleconferencing could enable health professionals to support patients more frequently, which is important in exercise behavior. Objective This study aims to examine the overall concept and acceptability of teleconferencing for the delivery of falls rehabilitation with health care professionals and older adults and to examine the usability, acceptability, and feasibility of teleconferencing delivery with health care professionals and patients. Methods There were 2 stages to the research: patient and public involvement workshops and usability and feasibility testing. A total of 2 workshops were conducted, one with 5 health care professionals and the other with 8 older adults from a community strength and balance exercise group. For usability and feasibility testing, we tested teleconferencing both one-to-one and in small groups on a smartphone with one falls service and their patients for 3 weeks. Semistructured interviews and focus groups were used to explore acceptability, usability, and feasibility. Focus groups were conducted with the service that used teleconferencing with patients and 2 other services that received only a demonstration of how teleconferencing works. Qualitative data were analyzed using the framework approach. Results In the workshops, the health care professionals thought that teleconferencing provided an opportunity to save travel time. Older adults thought that it could enable increased support. Safety is of key importance, and delivery needs to be carefully considered. Both older adults and health care professionals felt that it was important that technology did not eliminate face-to-face contact. There were concerns from older adults about the intrusiveness of technology. For the usability and feasibility testing, 7 patients and 3 health care professionals participated, with interviews conducted with 6 patients and a focus group with the health care team. Two additional teams (8 health professionals) took part in a demonstration and focus group. Barriers and facilitators were identified, with 5 barriers around reliability due to poor connectivity, cost of connectivity, safety concerns linked to positioning of equipment and connectivity, intrusiveness of technology, and resistance to group teleconferencing. Two facilitators focused on the positive benefits of increased support and monitoring and positive solutions for future improvements. Conclusions Teleconferencing as a way of delivering fall prevention interventions can be acceptable to older adults, patients, and health care professionals if it works effectively. Connectivity, where there is no Wi-Fi provision, is one of the largest issues. Therefore, local infrastructure needs to be improved. A larger usability study is required to establish whether better equipment for delivery improves usability.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Erica Jane Cook ◽  
Faye Powell ◽  
Nasreen Ali ◽  
Catrin Penn-Jones ◽  
Bertha Ochieng ◽  
...  

Abstract Background The United Kingdom has one of the lowest breastfeeding rates in Europe, with the initiation and continuation of breastfeeding shown to be closely related to the mothers’ age, ethnicity and social class. Whilst the barriers that influence a woman’s decision to breastfeed are well documented, less is known how these barriers vary by the UK’s diverse population. As such, this study aimed to explore mothers’ experiences of breastfeeding and accessing breastfeeding services offered locally amongst a deprived and culturally diverse community. Methods A qualitative interpretive study comprising of 63 mothers (white British n = 8, Pakistani n = 13, Bangladeshi n = 10, black African n = 15 and Polish n = 17) who took part in single-sex focus groups, conducted in local community centres across the most deprived and ethnically diverse wards in Luton, UK. The focus groups were audio-recorded, transcribed and analysed thematically using Framework Analysis. Results The most common barriers to breastfeeding irrespective of ethnicity were perceptions surrounding pain and lack of milk. Confidence and motivation were found to be crucial facilitators of breastfeeding; whereby mothers felt that interventions should seek to reassure and support mothers not only during the early stages but throughout the breastfeeding journey. Mothers particularly valued the practical support provided by health care professions particularly surrounding positioning and attachment techniques. However, many mothers felt that the support from health care professionals was not always followed through. Conclusions The findings presented inform important recommendations for the design and implementation of future programs and interventions targeted at reducing breastfeeding inequalities. Interventions should focus on providing mothers practical support and reassurance not only during the early stages but throughout their breastfeeding journey. The findings also highlight the need for tailoring services to support diverse communities which acknowledge different traditional and familial practices.


2006 ◽  
Vol 4 (1) ◽  
pp. 13-24 ◽  
Author(s):  
SHANE SINCLAIR ◽  
SHELLEY RAFFIN ◽  
JOSE PEREIRA ◽  
NANCY GUEBERT

Objective:Although spirituality as it relates to patients is gaining increasing attention, less is known about how health care professionals (HCP) experience spirituality personally or collectively in the workplace. This study explores the collective spirituality of an interdisciplinary palliative care team, by studying how individuals felt about their own spirituality, whether there was a shared sense of a team spirituality, how spirituality related to the care the team provided to patients and whether they felt that they provided spiritual care.Methods:A qualitative autoethnographic approach was used. The study was conducted in a 10-bed Tertiary Palliative Care Unit (TPCU) in a large acute-care referral hospital and cancer center. Interdisciplinary team members of the TPCU were invited to participate in one-to-one interviews and/or focus groups. Five interviews and three focus groups were conducted with a total of 20 participants.Results:Initially participants struggled to define spirituality. Concepts of spirituality relating to integrity, wholeness, meaning, and personal journeying emerged. For many, spirituality is inherently relational. Others acknowledged transcendence as an element of spirituality. Spirituality was described as being wrapped in caring and often manifests in small daily acts of kindness and of love, embedded within routine acts of caring. Palliative care served as a catalyst for team members' own spiritual journeys. For some participants, palliative care represented a spiritual calling. A collective spirituality stemming from common goals, values, and belonging surfaced.Significance of results:This was the first known study that focused specifically on the exploration of a collective spirituality. The culture of palliative care seems to foster spiritual reflection among health care professionals both as individuals and as a whole. While spirituality was difficult to describe, it was a shared experience often tangibly present in the provision of care on all levels.


2018 ◽  
Author(s):  
Il-Young Jang ◽  
Hae Reong Kim ◽  
Eunju Lee ◽  
Hee-Won Jung ◽  
Hyelim Park ◽  
...  

BACKGROUND Community-dwelling older adults living in rural areas are in a less favorable environment for health care compared with urban older adults. We believe that intermittent coaching through wearable devices can help optimize health care for older adults in medically limited environments. OBJECTIVE We aimed to evaluate whether a wearable device and mobile-based intermittent coaching or self-management could increase physical activity and health outcomes of small groups of older adults in rural areas. METHODS To address the above evaluation goal, we carried out the “Smart Walk” program, a health care model wherein a wearable device is used to promote self-exercise particularly among community-dwelling older adults managed by a community health center. We randomly selected older adults who had enrolled in a population-based, prospective cohort study of aging, the Aging Study of Pyeongchang Rural Area. The “Smart Walk” program was a 13-month program conducted from March 2017 to March 2018 and included 6 months of coaching, 1 month of rest, and 6 months of self-management. We evaluated differences in physical activity and health outcomes according to frailty status and conducted pre- and postanalyses of the Smart Walk program. We also performed intergroup analysis according to adherence of wearable devices. RESULTS We recruited 22 participants (11 robust and 11 prefrail older adults). The two groups were similar in most of the variables, except for age, frailty index, and Short Physical Performance Battery score associated with frailty criteria. After a 6-month coaching program, the prefrail group showed significant improvement in usual gait speed (mean 0.73 [SD 0.11] vs mean 0.96 [SD 0.27], P=.02), International Physical Activity Questionnaire scores in kcal (mean 2790.36 [SD 2224.62] vs mean 7589.72 [SD 4452.52], P=.01), and European Quality of Life-5 Dimensions score (mean 0.84 [SD 0.07] vs mean 0.90 [SD 0.07], P=.02), although no significant improvement was found in the robust group. The average total step count was significantly different and was approximately four times higher in the coaching period than in the self-management period (5,584,295.83 vs 1,289,084.66, P<.001). We found that participants in the “long-self” group who used the wearable device for the longest time showed increased body weight and body mass index by mean 0.65 (SD 1.317) and mean 0.097 (SD 0.513), respectively, compared with the other groups. CONCLUSIONS Our “Smart Walk” program improved physical fitness, anthropometric measurements, and geriatric assessment categories in a small group of older adults in rural areas with limited resources for monitoring. Further validation through various rural public health centers and in a large number of rural older adults is required.


2018 ◽  
Author(s):  
Christina Østervang ◽  
Lene Vedel Vestergaard ◽  
Karin Brochstedt Dieperink ◽  
Dorthe Boe Danbjørg

BACKGROUND In cancer settings, relatives are often seen as a resource as they are able to support the patient and remember information during hospitalization. However, geographic distance to hospitals, work, and family obligations are reasons that may cause difficulties for relatives’ physical participation during hospitalization. This provided inspiration to uncover the possibility of telehealth care in connection with enabling participation by relatives during patient rounds. Telehealth is used advantageously in health care systems but is also at risk of failing during the implementation process because of, for instance, health care professionals’ resistance to change. Research on the implications for health care professionals in involving relatives’ participation through virtual presence during patient rounds is limited. OBJECTIVE This study aimed to investigate health care professionals’ experiences in using and implementing technology to involve relatives during video-consulted patient rounds. METHODS The design was a qualitative approach. Methods used were focus group interviews, short open interviews, and field observations of health care professionals working at a cancer department. The text material was analyzed using interpretative phenomenological analysis. RESULTS Field observational studies were conducted for 15 days, yielding 75 hours of observation. A total of 14 sessions of video-consulted patient rounds were observed and 15 pages of field notes written, along with 8 short open interviews with physicians, nurses, and staff from management. Moreover, 2 focus group interviews with 9 health care professionals were conducted. Health care professionals experienced the use of technology as a way to facilitate involvement of the patient’s relatives, without them being physically present. Moreover, it raised questions about whether this way of conducting patient rounds could address the needs of both the patients and the relatives. Time, culture, and change of work routines were found to be the major barriers when implementing new technology involving relatives. CONCLUSIONS This study identified a double change by introducing both new technology and virtual participation by relatives at the same time. The change had consequences on health care professionals’ work routines with regard to work load, culture, and organization because of the complexity in health care systems.


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