cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.15468/dl.rhqnmc
title: Occurrence Download

description: A dataset containing 3077 records in GBIF matching the query:
SELECT
 '28' AS fish_cell,
 GBIF_MGRSCode(1000, decimalLatitude, decimalLongitude, 0) AS cell, -- NO randomization
 COUNT(DISTINCT speciesKey) AS species_richness
 FROM occurrence
 WHERE hasCoordinate = TRUE
 AND speciesKey IS NOT NULL
 AND NOT ARRAY_CONTAINS(issue, 'ZERO_COORDINATE')
 AND NOT ARRAY_CONTAINS(issue, 'COORDINATE_OUT_OF_RANGE')
 AND NOT ARRAY_CONTAINS(issue, 'COORDINATE_INVALID')
 AND NOT ARRAY_CONTAINS(issue, 'COUNTRY_COORDINATE_MISMATCH')
 AND decimalLatitude &gt;= -33.06103686093294
 AND decimalLatitude &lt;= -28.773895969281842
 AND decimalLongitude &gt;= 124.49902042620815
 AND decimalLongitude &lt;= 133.58679704081885
 AND "year" &gt;= 2015
 AND "year" &lt;= 2026
 AND (coordinateUncertaintyInMeters &lt;= 100 OR coordinateUncertaintyInMeters IS NULL)
 GROUP BY fish_cell, cell

 The dataset's 3077 records were derived from 47 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0003148-260120142942310/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.6084/m9.figshare.29039651
title: Revealing the protective mindfulness-moderation on loneliness, depression, and quality of life among spinal cord injury survivors in a mixed-methods study

description: Loneliness, prevalent in people with spinal cord injuries (SCI), is negatively associated with mental health and quality of life. Mindfulness is a potential moderator that may buffer the negative impact of loneliness. This study aimed to explore the moderation effects of mindfulness on the relationship between loneliness, depression, and quality of life among people with SCI. We conducted an explanatory sequential mixed-methods study on SCI survivors in Hong Kong. Survey data (<i>n</i> = 72) including socio-demographics, mindfulness, loneliness, depression, and quality of life were analyzed using moderated regression with the SPSS PROCESS macro. Focus group interviews (<i>n</i> = 15) were analyzed using thematic analysis. Mindfulness significantly moderated the positive association between loneliness and depression (<i>B</i>= −0.060, <i>p</i> = 0.006), and a cutoff value (&gt;116.569) for moderation was identified. The mindfulness moderation on the relationship between loneliness and quality of life was insignificant. Three themes were generated: connectedness contributes to subjective well-being, mindful perceptions foster emotional resilience and happiness, and mindful perceptions enhance physical health and social connections. This study revealed the protective moderation mechanism of mindfulness in buffering the negative impacts of loneliness on depression, providing a strong theoretical foundation for the use of mindfulness-based interventions in improving mental well-being among SCI survivors. Mindfulness appears to buffer the negative impacts of loneliness on depression among individuals with spinal cord injury.Mindfulness-based interventions are recommended to enhance the mental well-being of spinal cord injury survivors, who are particularly vulnerable to loneliness.Mindfulness-based interventions, such as mindfulness-based stress reduction, are encouraged to be included in rehabilitation routines by professionals. Mindfulness appears to buffer the negative impacts of loneliness on depression among individuals with spinal cord injury. Mindfulness-based interventions are recommended to enhance the mental well-being of spinal cord injury survivors, who are particularly vulnerable to loneliness. Mindfulness-based interventions, such as mindfulness-based stress reduction, are encouraged to be included in rehabilitation routines by professionals.
DOI: 10.6084/m9.figshare.29039651.v1
title: Revealing the protective mindfulness-moderation on loneliness, depression, and quality of life among spinal cord injury survivors in a mixed-methods study

description: Loneliness, prevalent in people with spinal cord injuries (SCI), is negatively associated with mental health and quality of life. Mindfulness is a potential moderator that may buffer the negative impact of loneliness. This study aimed to explore the moderation effects of mindfulness on the relationship between loneliness, depression, and quality of life among people with SCI. We conducted an explanatory sequential mixed-methods study on SCI survivors in Hong Kong. Survey data (<i>n</i> = 72) including socio-demographics, mindfulness, loneliness, depression, and quality of life were analyzed using moderated regression with the SPSS PROCESS macro. Focus group interviews (<i>n</i> = 15) were analyzed using thematic analysis. Mindfulness significantly moderated the positive association between loneliness and depression (<i>B</i>= −0.060, <i>p</i> = 0.006), and a cutoff value (&gt;116.569) for moderation was identified. The mindfulness moderation on the relationship between loneliness and quality of life was insignificant. Three themes were generated: connectedness contributes to subjective well-being, mindful perceptions foster emotional resilience and happiness, and mindful perceptions enhance physical health and social connections. This study revealed the protective moderation mechanism of mindfulness in buffering the negative impacts of loneliness on depression, providing a strong theoretical foundation for the use of mindfulness-based interventions in improving mental well-being among SCI survivors. Mindfulness appears to buffer the negative impacts of loneliness on depression among individuals with spinal cord injury.Mindfulness-based interventions are recommended to enhance the mental well-being of spinal cord injury survivors, who are particularly vulnerable to loneliness.Mindfulness-based interventions, such as mindfulness-based stress reduction, are encouraged to be included in rehabilitation routines by professionals. Mindfulness appears to buffer the negative impacts of loneliness on depression among individuals with spinal cord injury. Mindfulness-based interventions are recommended to enhance the mental well-being of spinal cord injury survivors, who are particularly vulnerable to loneliness. Mindfulness-based interventions, such as mindfulness-based stress reduction, are encouraged to be included in rehabilitation routines by professionals.
DOI: 10.6084/m9.figshare.26947707
title: Caring for yourself while you care for someone else: a qualitative study exploring the mental and cardiovascular health behaviours of female carers of stroke survivors

description: Female carers of stroke survivors may experience increased risk of developing chronic health issues, such as cardiovascular disease. This study aims to understand: (i) how female carers of stroke survivors manage their mental and cardiovascular health and (ii) the characteristics they would find helpful in an intervention to support their ability to manage their health and wellbeing. A qualitative descriptive design was used with data collected <i>via</i> semi-structured interviews and analysed using inductive thematic analysis. Eighteen female carers of stroke survivors participated in the study. Three key themes were identified: (i) struggling to prioritise own health and wellbeing; (ii) new roles and responsibilities impact on self-care; and (iii) peer-support improves mental health and well-being. Carers described preferences for group interventions to include peer support and have flexible delivery to allow easy access to information. One-to-one sessions with different health professionals may also be useful at times through the caregiving journey. These findings suggest that current interventions do not address cardiovascular risk self-management for female carers and provide insight into characteristics of interventions that may increase acceptability and feasibility of interventions to support long-term cardiovascular and mental health-promoting behaviours. Female carers of stroke survivors report poor mental health and well-being outcomes and may be at a higher risk of developing chronic health issues.Female carers report difficulty engaging in healthy lifestyle choices particularly those targeting diet and exercise and struggle to adapt to new caregiving roles and responsibilities impact on self-care.Female carers also believed that an intervention incorporating peer support, educational resources, and convenient access to health professionals in a flexible manner would support them in addressing their long-term health and well-being. Female carers of stroke survivors report poor mental health and well-being outcomes and may be at a higher risk of developing chronic health issues. Female carers report difficulty engaging in healthy lifestyle choices particularly those targeting diet and exercise and struggle to adapt to new caregiving roles and responsibilities impact on self-care. Female carers also believed that an intervention incorporating peer support, educational resources, and convenient access to health professionals in a flexible manner would support them in addressing their long-term health and well-being.
DOI: 10.6084/m9.figshare.26947707.v1
title: Caring for yourself while you care for someone else: a qualitative study exploring the mental and cardiovascular health behaviours of female carers of stroke survivors

description: Female carers of stroke survivors may experience increased risk of developing chronic health issues, such as cardiovascular disease. This study aims to understand: (i) how female carers of stroke survivors manage their mental and cardiovascular health and (ii) the characteristics they would find helpful in an intervention to support their ability to manage their health and wellbeing. A qualitative descriptive design was used with data collected <i>via</i> semi-structured interviews and analysed using inductive thematic analysis. Eighteen female carers of stroke survivors participated in the study. Three key themes were identified: (i) struggling to prioritise own health and wellbeing; (ii) new roles and responsibilities impact on self-care; and (iii) peer-support improves mental health and well-being. Carers described preferences for group interventions to include peer support and have flexible delivery to allow easy access to information. One-to-one sessions with different health professionals may also be useful at times through the caregiving journey. These findings suggest that current interventions do not address cardiovascular risk self-management for female carers and provide insight into characteristics of interventions that may increase acceptability and feasibility of interventions to support long-term cardiovascular and mental health-promoting behaviours. Female carers of stroke survivors report poor mental health and well-being outcomes and may be at a higher risk of developing chronic health issues.Female carers report difficulty engaging in healthy lifestyle choices particularly those targeting diet and exercise and struggle to adapt to new caregiving roles and responsibilities impact on self-care.Female carers also believed that an intervention incorporating peer support, educational resources, and convenient access to health professionals in a flexible manner would support them in addressing their long-term health and well-being. Female carers of stroke survivors report poor mental health and well-being outcomes and may be at a higher risk of developing chronic health issues. Female carers report difficulty engaging in healthy lifestyle choices particularly those targeting diet and exercise and struggle to adapt to new caregiving roles and responsibilities impact on self-care. Female carers also believed that an intervention incorporating peer support, educational resources, and convenient access to health professionals in a flexible manner would support them in addressing their long-term health and well-being.
DOI: 10.6084/m9.figshare.26968536
title: Content and readability of patient educational materials about neuromodulation for childhood movement disorders

description: To assess content and readability of online patient educational materials (PEMs) for paediatric deep brain stimulation (DBS) and intrathecal baclofen (ITB). A content analysis of PEMs identified from top children’s hospitals, institutions affiliated with published neuromodulation research, and DBS and ITB device manufacturers was conducted. PEM content was analysed using a predetermined framework. Readability was assessed using the Simple Measure of Gobbledygook (SMOG). Of 109 PEMs (72 DBS; 37 ITB) identified, most (77 (71%)) originated in the United States. More ITB PEMs (27 (73%)) contained specific paediatric information than DBS PEMs (16 (22%)). PEMS more frequently described benefits (DBS: 92%; ITB: 89%) than risks (DBS: 49%; ITB: 78%). Frequent content included pre- and post-operative care, procedural details, and device information. Less common content included long-term lifestyle considerations, alternatives, patient experiences, and financial details. Median readability of PEMs was 13.2 (interquartile range [IQR]: 11.4–14.45) for DBS and 11.8 (IQR: 11–12.9) for ITB. Available ITB and DBS PEMs often miss important broader details of the treatments, and have additional shortcomings such as poor readability scores. Our findings highlight need for more holistic content within neuromodulation PEMs, improved accessibility, and more balanced representation of risks and benefits. Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders.There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA.Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication.Benefits of neuromodulation are described more frequently than risk information in PEMs. Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders. There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA. Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication. Benefits of neuromodulation are described more frequently than risk information in PEMs.
DOI: 10.6084/m9.figshare.26968536.v1
title: Content and readability of patient educational materials about neuromodulation for childhood movement disorders

description: To assess content and readability of online patient educational materials (PEMs) for paediatric deep brain stimulation (DBS) and intrathecal baclofen (ITB). A content analysis of PEMs identified from top children’s hospitals, institutions affiliated with published neuromodulation research, and DBS and ITB device manufacturers was conducted. PEM content was analysed using a predetermined framework. Readability was assessed using the Simple Measure of Gobbledygook (SMOG). Of 109 PEMs (72 DBS; 37 ITB) identified, most (77 (71%)) originated in the United States. More ITB PEMs (27 (73%)) contained specific paediatric information than DBS PEMs (16 (22%)). PEMS more frequently described benefits (DBS: 92%; ITB: 89%) than risks (DBS: 49%; ITB: 78%). Frequent content included pre- and post-operative care, procedural details, and device information. Less common content included long-term lifestyle considerations, alternatives, patient experiences, and financial details. Median readability of PEMs was 13.2 (interquartile range [IQR]: 11.4–14.45) for DBS and 11.8 (IQR: 11–12.9) for ITB. Available ITB and DBS PEMs often miss important broader details of the treatments, and have additional shortcomings such as poor readability scores. Our findings highlight need for more holistic content within neuromodulation PEMs, improved accessibility, and more balanced representation of risks and benefits. Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders.There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA.Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication.Benefits of neuromodulation are described more frequently than risk information in PEMs. Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders. There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA. Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication. Benefits of neuromodulation are described more frequently than risk information in PEMs.
DOI: 10.6084/m9.figshare.27641893
title: The role of race and ethnicity in leisure participation among children and youth with disabilities: a systematic review

description: Racial and ethnic minoritized children and youth with disabilities participate less often in structured leisure activities compared to their white peers and yet, little is known about the role of race/ethnicity in their participation. The purpose of this review was to understand the role of race/ethnicity in leisure participation of children and youth with disabilities. We systematically assessed peer-reviewed studies published from 2000 to 2023 in six international databases. We independently screened and identified thirteen studies meeting our inclusion criteria. Three themes emerged from our findings: (1) rates of leisure participation; (2) factors affecting leisure participation (i.e., ableism and racism; fear of harassment and safety; systemic factors; disability-related factors and intersectional factors); and (3) benefits and impact of culture on leisure participation (i.e., perceived benefits of leisure participation; perceived constraints of leisure participation; parents’ advocacy; importance of family participation). Findings revealed how disability and racial discrimination, systemic factors, cultural preferences, and availability of financial resources all shape leisure experiences and rate of participation for racial/ethnic minoritized children and youth with disabilities. Future research should explore the impact of culture on leisure participation in more depth. Understanding what leisure means to racial/ethnic minoritized parents of children with disabilities could help pediatric rehabilitation therapists to facilitate meaningful and culturally sensitive leisure programs.A multi-faceted approach is needed to improve leisure participation of racial/ethnic minoritized children and youth with disabilities, which involves parents/caregivers, leisure providers, community stakeholders, and children and youth with disabilities.Rehabilitation clinicians and recreational therapists should consider designing new or adapting existing leisure programs that align with the culture and preferences of racial/ethnic minoritized children and youth with disabilities to support their participation. Understanding what leisure means to racial/ethnic minoritized parents of children with disabilities could help pediatric rehabilitation therapists to facilitate meaningful and culturally sensitive leisure programs. A multi-faceted approach is needed to improve leisure participation of racial/ethnic minoritized children and youth with disabilities, which involves parents/caregivers, leisure providers, community stakeholders, and children and youth with disabilities. Rehabilitation clinicians and recreational therapists should consider designing new or adapting existing leisure programs that align with the culture and preferences of racial/ethnic minoritized children and youth with disabilities to support their participation.
DOI: 10.6084/m9.figshare.27641893.v1
title: The role of race and ethnicity in leisure participation among children and youth with disabilities: a systematic review

description: Racial and ethnic minoritized children and youth with disabilities participate less often in structured leisure activities compared to their white peers and yet, little is known about the role of race/ethnicity in their participation. The purpose of this review was to understand the role of race/ethnicity in leisure participation of children and youth with disabilities. We systematically assessed peer-reviewed studies published from 2000 to 2023 in six international databases. We independently screened and identified thirteen studies meeting our inclusion criteria. Three themes emerged from our findings: (1) rates of leisure participation; (2) factors affecting leisure participation (i.e., ableism and racism; fear of harassment and safety; systemic factors; disability-related factors and intersectional factors); and (3) benefits and impact of culture on leisure participation (i.e., perceived benefits of leisure participation; perceived constraints of leisure participation; parents’ advocacy; importance of family participation). Findings revealed how disability and racial discrimination, systemic factors, cultural preferences, and availability of financial resources all shape leisure experiences and rate of participation for racial/ethnic minoritized children and youth with disabilities. Future research should explore the impact of culture on leisure participation in more depth. Understanding what leisure means to racial/ethnic minoritized parents of children with disabilities could help pediatric rehabilitation therapists to facilitate meaningful and culturally sensitive leisure programs.A multi-faceted approach is needed to improve leisure participation of racial/ethnic minoritized children and youth with disabilities, which involves parents/caregivers, leisure providers, community stakeholders, and children and youth with disabilities.Rehabilitation clinicians and recreational therapists should consider designing new or adapting existing leisure programs that align with the culture and preferences of racial/ethnic minoritized children and youth with disabilities to support their participation. Understanding what leisure means to racial/ethnic minoritized parents of children with disabilities could help pediatric rehabilitation therapists to facilitate meaningful and culturally sensitive leisure programs. A multi-faceted approach is needed to improve leisure participation of racial/ethnic minoritized children and youth with disabilities, which involves parents/caregivers, leisure providers, community stakeholders, and children and youth with disabilities. Rehabilitation clinicians and recreational therapists should consider designing new or adapting existing leisure programs that align with the culture and preferences of racial/ethnic minoritized children and youth with disabilities to support their participation.