cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.14137958.v1
title: “Do what you can with a happy heart”: a longitudinal study of patient and family members’ lived experiences of physical activity post-myocardial infarction

description: Physical activity (PA) post-myocardial infarction (MI) can reduce risk of reoccurrence and mortality. Yet uptake of PA through cardiac rehabilitation (CR) is poor, and little is known about the long-term PA behaviour of cardiac patients. This study aimed to explore the lived experiences of patients’ engagement with PA post-MI, together with the experiences of their family. Longitudinal interviews with six family-dyads were conducted which drew on interpretative phenomenology to understand the lived experiences of PA for post-MI patients and family members. Participants described a journey that involved leaving “normality” (doing what PA they wanted and when) and transitioning to a new “normality” (being active within post-MI parameters). This journey was expressed through feelings of “I can’t do what I was doing before,” “finding my way,” and “accepting this way”. The role of family within the patient’s journey was complex, with PA identity, beliefs, and fear of MI re-occurrence influencing PA support both positively and negatively. PA engagement post-MI is a dynamic and interactive process within which the family can have an important influence.IMPLICATIONS FOR REHABILITATIONThe process of (re-)engaging in physical activity post-myocardial infarction involves a complex journey towards acceptance of a new “normality”.Family play an important role in regulating and supporting patients’ physical activity during the rehabilitation process.Promoting positive health beliefs and helping families understand what, how and when patients should be physically active may optimise the rehabilitation journey for post-myocardial infarction patients. The process of (re-)engaging in physical activity post-myocardial infarction involves a complex journey towards acceptance of a new “normality”. Family play an important role in regulating and supporting patients’ physical activity during the rehabilitation process. Promoting positive health beliefs and helping families understand what, how and when patients should be physically active may optimise the rehabilitation journey for post-myocardial infarction patients.
DOI: 10.6084/m9.figshare.13490365.v1
title: An exploration of perceived social isolation among persons with spinal cord injury in Ontario, Canada: a qualitative study

description: To advance the understanding of perceived social isolation among persons with spinal cord injury (SCI), the objectives of the present study were to explore: (1) experiences of perceived social isolation and (2) factors that contribute to perceived social isolation. Interpretive description qualitative methodology was used to conduct semi-structured interviews with 30 individuals with SCI from across Ontario (Canada) from November 2016 to August 2017. Data were analyzed using thematic analysis. Participants identified disruption to social networks that seemed to impact perceived social isolation. Five major themes were identified: (1) impact on structure and frequency of social network; (2) importance of feeling heard; (3) importance of employment, hobbies, and sports; (4) need to improve physical accessibility and built environment; and (5) individual characteristics. Changes in quality of social networks, rather than size, contributed to greater feelings of perceived social isolation. The built environment, maintenance of employment, hobbies, and sports, social media, and technology use, as well as individual traits, were also found to impact perceived social isolation. Future research should focus on the development of programs to help maintain or improve social network quality for persons with SCI to minimize the impact of perceived social isolation.IMPLICATIONS FOR REHABILITATIONPerceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI).Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation.Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation. Perceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI). Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation. Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation.
DOI: 10.6084/m9.figshare.14551518
title: The relevance of stroke care for living well with post-stroke aphasia: a qualitative interview study with working-aged adults

description: This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA. This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency. The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.Implications for rehabilitationThere is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.This includes flexible access to mental healthcare and speech and language therapy.In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.Training to improve aphasia competency is imperative for healthcare workers. There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia. People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. This includes flexible access to mental healthcare and speech and language therapy. In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support. Training to improve aphasia competency is imperative for healthcare workers.
DOI: 10.6084/m9.figshare.13490365
title: An exploration of perceived social isolation among persons with spinal cord injury in Ontario, Canada: a qualitative study

description: To advance the understanding of perceived social isolation among persons with spinal cord injury (SCI), the objectives of the present study were to explore: (1) experiences of perceived social isolation and (2) factors that contribute to perceived social isolation. Interpretive description qualitative methodology was used to conduct semi-structured interviews with 30 individuals with SCI from across Ontario (Canada) from November 2016 to August 2017. Data were analyzed using thematic analysis. Participants identified disruption to social networks that seemed to impact perceived social isolation. Five major themes were identified: (1) impact on structure and frequency of social network; (2) importance of feeling heard; (3) importance of employment, hobbies, and sports; (4) need to improve physical accessibility and built environment; and (5) individual characteristics. Changes in quality of social networks, rather than size, contributed to greater feelings of perceived social isolation. The built environment, maintenance of employment, hobbies, and sports, social media, and technology use, as well as individual traits, were also found to impact perceived social isolation. Future research should focus on the development of programs to help maintain or improve social network quality for persons with SCI to minimize the impact of perceived social isolation.IMPLICATIONS FOR REHABILITATIONPerceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI).Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation.Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation. Perceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI). Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation. Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation.
DOI: 10.6084/m9.figshare.13603257
title: A mixed-methods analysis examining child and family needs following early brain injury

description: <b>Purpose</b>:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (<i>M</i> = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment. <b>Methods:</b> Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child’s behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed. <b>Results:</b> Results indicated some families continue to experience unresolved concerns relating to the child’s injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping. <b>Conclusion:</b> Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting.IMPLICATIONS FOR REHABILITATIONEarly TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family.Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury.Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI. Early TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family. Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury. Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.
DOI: 10.6084/m9.figshare.13603257.v1
title: A mixed-methods analysis examining child and family needs following early brain injury

description: <b>Purpose</b>:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (<i>M</i> = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment. <b>Methods:</b> Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child’s behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed. <b>Results:</b> Results indicated some families continue to experience unresolved concerns relating to the child’s injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping. <b>Conclusion:</b> Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting.IMPLICATIONS FOR REHABILITATIONEarly TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family.Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury.Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI. Early TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family. Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury. Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.
DOI: 10.6084/m9.figshare.14551518.v1
title: The relevance of stroke care for living well with post-stroke aphasia: a qualitative interview study with working-aged adults

description: This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA. This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency. The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.Implications for rehabilitationThere is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.This includes flexible access to mental healthcare and speech and language therapy.In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.Training to improve aphasia competency is imperative for healthcare workers. There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia. People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. This includes flexible access to mental healthcare and speech and language therapy. In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support. Training to improve aphasia competency is imperative for healthcare workers.
DOI: 10.5281/zenodo.7059553
title: Data for figures in Model predictions of wave overwash extent into the marginal ice zone

description: The data required to reproduce the figures in 'Model predictions of wave overwash extent into the marginal ice zone'. The data includes: Coefficient values produced by coupled floe-wave motions, required to determine overwash of a single floe and thus the overwash extent model. The data for the transects used to predict overwash in Figure 11 (Agulhas II), includes wave conditions and the ice concentration along the transect (other floe field properties remains constant). The code is uploaded at - <pre>https://doi.org/10.5281/zenodo.7059554</pre>
DOI: 10.5281/zenodo.7059554
title: Data for figures in Model predictions of wave overwash extent into the marginal ice zone

description: The data required to reproduce the figures in 'Model predictions of wave overwash extent into the marginal ice zone'. The data includes: Coefficient values produced by coupled floe-wave motions, required to determine overwash of a single floe and thus the overwash extent model. The data for the transects used to predict overwash in Figure 11 (Agulhas II), includes wave conditions and the ice concentration along the transect (other floe field properties remains constant). The code is uploaded at - <pre>https://doi.org/10.5281/zenodo.7059554</pre>
DOI: 10.5281/zenodo.7080885
title: Measurement of Social Strain in People with Dementia: A Pre-liminary Study of the Reliability and Validity of the Negative Relationship Quality Questionnaire in Indonesia

description: People<strong> </strong>with dementia (PWD) may exhibit symptoms that negatively affect their relationships with their families or friends which could cause social strain. The Negative Relationship Quality (NRQ) questionnaire can be used to measure social strain in PWD. There has never been an Indonesian adaptation of the NRQ. This preliminary study aimed to measure the validity and reliability of the NRQ among PWD in Indonesia (NRQ-INA). This study used a cross-sectional design. Forward–backward translation methods were conducted first. Pearson’s correlation and factor analysis were employed for the validity test. Cronbach’s alpha and test–retest were used to determine reliability. The NRQ-INA has four parallel items related to social strain that are divided into three subscales and asked to spouse/partner, family members, and friends, leading to a total of 12 questions. The results of validity testing from 60 respondents showed that all items in the NRQ-INA were strongly valid with correlation coefficients (<em>r</em>) of &gt;0.8 (<em>p</em>&lt;0.01). Factor analysis showed a convergence with the variance explained of more than 50% for all items in each subscale, which also indicated that NRQ-INA had acceptable construct validity to measure social strain. Cronbach’s alpha values (α) were 0.926, 0.942, and 0.938 for the subscales of spouse, friends, and family members, respectively. The correlations of test–retest reliability for all items were &gt;0.7 (<em>p</em>&lt;0.01), demonstrating a reliable NRQ-INA measurement. In conclusion, NRQ-INA had a good validity and reliability to measure social strain in PWD. Further study of the concurrent validity among PWD is still needed.
DOI: 10.5281/zenodo.7080884
title: Measurement of Social Strain in People with Dementia: A Pre-liminary Study of the Reliability and Validity of the Negative Relationship Quality Questionnaire in Indonesia

description: People<strong> </strong>with dementia (PWD) may exhibit symptoms that negatively affect their relationships with their families or friends which could cause social strain. The Negative Relationship Quality (NRQ) questionnaire can be used to measure social strain in PWD. There has never been an Indonesian adaptation of the NRQ. This preliminary study aimed to measure the validity and reliability of the NRQ among PWD in Indonesia (NRQ-INA). This study used a cross-sectional design. Forward–backward translation methods were conducted first. Pearson’s correlation and factor analysis were employed for the validity test. Cronbach’s alpha and test–retest were used to determine reliability. The NRQ-INA has four parallel items related to social strain that are divided into three subscales and asked to spouse/partner, family members, and friends, leading to a total of 12 questions. The results of validity testing from 60 respondents showed that all items in the NRQ-INA were strongly valid with correlation coefficients (<em>r</em>) of &gt;0.8 (<em>p</em>&lt;0.01). Factor analysis showed a convergence with the variance explained of more than 50% for all items in each subscale, which also indicated that NRQ-INA had acceptable construct validity to measure social strain. Cronbach’s alpha values (α) were 0.926, 0.942, and 0.938 for the subscales of spouse, friends, and family members, respectively. The correlations of test–retest reliability for all items were &gt;0.7 (<em>p</em>&lt;0.01), demonstrating a reliable NRQ-INA measurement. In conclusion, NRQ-INA had a good validity and reliability to measure social strain in PWD. Further study of the concurrent validity among PWD is still needed.
DOI: 10.5281/zenodo.7080900
title: Drop freezing experiments

description: Set of drop freezing experiments performed on Saharan dust.
DOI: 10.5281/zenodo.7080899
title: Drop freezing experiments

description: Set of drop freezing experiments performed on Saharan dust.
DOI: 10.5517/ccdc.csd.cc2bdtn7
title: CCDC 2157279: Experimental Crystal Structure Determination

description: Related Article: Jannis Nonnhoff, Hans-Georg Stammler, Harald Gröger|2022|J.Org.Chem.|87|11369|doi:10.1021/acs.joc.2c00839
description: An entry from the Cambridge Structural Database, the world’s repository for small molecule crystal structures. The entry contains experimental data from a crystal diffraction study. The deposited dataset for this entry is freely available from the CCDC and typically includes 3D coordinates, cell parameters, space group, experimental conditions and quality measures.