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Epilepsy & Behavior : E&B Jun 2024It has been determined that quality of life in epilepsy is closely related to the perceived disability experienced by individuals with the diagnosis. However, this...
It has been determined that quality of life in epilepsy is closely related to the perceived disability experienced by individuals with the diagnosis. However, this measure is seldom considered in healthcare processes. The objective of the present study is to establish the psychometric properties of the Perceived Disability Questionnaire in individuals diagnosed with epilepsy within a Latin American context. A cross-sectional, analytical study was conducted involving 325 participants, aged 12 years and older (M 40.42 years), individuals diagnosed with epilepsy in Colombia. The main psychometric properties of the instrument were explored to account for its factorial validity and reliability. The Perceived Disability Questionnaire exhibits high reliability (α = 0.878) and the three subscales comprising the final version of the questionnaire (Dissatisfaction, Pessimism, and Self-Disdain) explain 45.393 % of the total variance in relation to beliefs of disability associated with the diagnosis of epilepsy; the questionnaire significantly correlates with the Quality of Life in Epilepsy Inventory (QOLIE-10). Adequate psychometric properties of the instrument are found, which allows for its proposal as a tool in epilepsy care processes within the Colombian context.
PubMed: 38941952
DOI: 10.1016/j.yebeh.2024.109915 -
PloS One 2024Spinal cord injury (SCI) is a consequence of significant disability and health issues globally, and long COVID represents the symptoms of neuro-musculoskeletal,...
BACKGROUND
Spinal cord injury (SCI) is a consequence of significant disability and health issues globally, and long COVID represents the symptoms of neuro-musculoskeletal, cardiovascular and respiratory complications.
PURPOSE
This study aimed to identify the symptom responses and disease burden of long COVID in individuals with spinal cord injury.
METHODS
This case-control study was conducted on patients with SCI residing at a specialised rehabilitation centre in Bangladesh. Forty patients with SCI with and without long COVID symptoms (LCS) were enrolled in this study at a 1:1 ratio according to WHO criteria.
RESULT
Twelve LCS were observed in patients with SCI, including fatigue, musculoskeletal pain, memory loss, headache, respiratory problems, anxiety, depression, insomnia, problem in ADL problem in work, palpitation, and weakness. The predictors of developing long COVID include increasing age (p<0.002), increasing BMI (p<0.03), and longer duration of spinal cord injury (p<0.004). A significant difference (p<0.01) in overall years of healthy life lost due to disability (YLD) for non-long COVID cases was 2.04±0.596 compared to long COVID (LC) cases 1.22±2.09 was observed.
CONCLUSION
Bangladeshi patients of SCI presented 12 long COVID symptoms and have a significant disease burden compared to non long COVID cases.
Topics: Humans; Spinal Cord Injuries; Male; Female; COVID-19; Case-Control Studies; Adult; Middle Aged; Bangladesh; Disabled Persons; SARS-CoV-2; Post-Acute COVID-19 Syndrome
PubMed: 38941308
DOI: 10.1371/journal.pone.0304824 -
JMIR Research Protocols Jun 2024The lack of regular physical activity (PA) in individuals with spinal cord injury (SCI) in the United States is an ongoing health crisis. Regular PA and exercise-based... (Randomized Controlled Trial)
Randomized Controlled Trial
mHealth-Based Just-in-Time Adaptive Intervention to Improve the Physical Activity Levels of Individuals With Spinal Cord Injury: Protocol for a Randomized Controlled Trial.
BACKGROUND
The lack of regular physical activity (PA) in individuals with spinal cord injury (SCI) in the United States is an ongoing health crisis. Regular PA and exercise-based interventions have been linked with improved outcomes and healthier lifestyles among those with SCI. Providing people with an accurate estimate of their everyday PA level can promote PA. Furthermore, PA tracking can be combined with mobile health technology such as smartphones and smartwatches to provide a just-in-time adaptive intervention (JITAI) for individuals with SCI as they go about everyday life. A JITAI can prompt an individual to set a PA goal or provide feedback about their PA levels.
OBJECTIVE
The primary aim of this study is to investigate whether minutes of moderate-intensity PA among individuals with SCI can be increased by integrating a JITAI with a web-based PA intervention (WI) program. The WI program is a 14-week web-based PA program widely recommended for individuals with disabilities. A secondary aim is to investigate the benefit of a JITAI on proximal PA, defined as minutes of moderate-intensity PA within 120 minutes of a PA feedback prompt.
METHODS
Individuals with SCI (N=196) will be randomized to a WI arm or a WI+JITAI arm. Within the WI+JITAI arm, a microrandomized trial will be used to randomize participants several times a day to different tailored feedback and PA recommendations. Participants will take part in the 24-week study from their home environment in the community. The study has three phases: (1) baseline, (2) WI program with or without JITAI, and (3) PA sustainability. Participants will provide survey-based information at the initial meeting and at the end of weeks 2, 8, 16, and 24. Participants will be asked to wear a smartwatch every day for ≥12 hours for the duration of the study.
RESULTS
Recruitment and enrollment began in May 2023. Data analysis is expected to be completed within 6 months of finishing participant data collection.
CONCLUSIONS
The JITAI has the potential to achieve long-term PA performance by delivering tailored, just-in-time feedback based on the person's actual PA behavior rather than a generic PA recommendation. New insights from this study may guide intervention designers to develop engaging PA interventions for individuals with disability.
TRIAL REGISTRATION
ClinicalTrials.gov NCT05317832; https://clinicaltrials.gov/study/NCT05317832.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)
DERR1-10.2196/57699.
Topics: Humans; Spinal Cord Injuries; Exercise; Telemedicine; Male; Female; Adult; Middle Aged; Exercise Therapy; Randomized Controlled Trials as Topic
PubMed: 38941145
DOI: 10.2196/57699 -
Health and Social Care Delivery Research Jun 2024People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often...
BACKGROUND
People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis.
OBJECTIVES
(1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources.
DESIGN AND METHODS
Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews ( = 30), survey ( = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living ( = 4); residential/nursing home ( = 2); day activities ( = 1), Shared Lives ( = 2). Fieldwork (20 days per model), interviews ( = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations.
FINDINGS
The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers.
CONCLUSIONS
There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design.
LIMITATIONS
The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources.
FUTURE WORK
Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards.
TRIAL REGISTRATION
This trial is registered as ISRCTN74264887.
FUNDING
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in ; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.
Topics: Humans; Caregivers; Aged; Learning Disabilities; Female; Male; Middle Aged; Adult; Social Support; Qualitative Research; Aged, 80 and over; Anthropology, Cultural; Health Services Needs and Demand
PubMed: 38940476
DOI: 10.3310/MTHW2644 -
Journal of Child & Adolescent Trauma Jun 2024One of the challenges for mental health research is the lack of an agreed set of outcome measures that are used routinely and consistently between disciplines and across...
PURPOSE
One of the challenges for mental health research is the lack of an agreed set of outcome measures that are used routinely and consistently between disciplines and across studies in order to build a more robust evidence base for how to better understand young people's mental health and effectively address diverse needs.
METHODS
This study involved a scoping review of reviews on consensus of the use of mental health and wellbeing measures with children and young people. We were particularly interested to identify if there are differences in measures that are recommended for children and young people with care experience including those with developmental disabilities.
FINDINGS
We identified 41 reviews, of which two had a focus on child welfare settings, three on childhood trauma and 14 focused on children and young people with developmental disabilities. Overall, our review highlights a lack of consensus and a diversity of measures within the field. We identified 60 recommended measures, of which only nine were recommended by more than one review.
CONCLUSIONS
Our review highlights the need for greater agreement in the use of mental health outcome measures. While our review highlights that there is value in identifying measures that can be used with any child or young person, researchers need to take into account additional considerations when working with children and young people with care experience and those with developmental disabilities, to ensure measures are accessible and sensitive to their life experiences.
PubMed: 38938951
DOI: 10.1007/s40653-023-00566-6 -
International Journal For Equity in... Jun 2024Addressing the sexuality of individuals with disabilities is important within the framework of global health and societal inclusivity. Despite comprising 16% of the...
Addressing the sexuality of individuals with disabilities is important within the framework of global health and societal inclusivity. Despite comprising 16% of the world's population, this demographic faces sexual autonomy inequality. Acknowledging this intersection is pertinent for achieving inclusive healthcare and upholding the commitments of the 1994 International Conference on Population and Development and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Dispelling stereotypes and promoting dialogue are key to empowering individuals with disabilities and ensuring equitable access to sexual health resources. Integrating sexual health and rights into broader healthcare systems is vital for creating an inclusive society where no one is left behind. This article advocates for the need to address the specific sexual health needs and rights of individuals with disabilities, to implement inclusive policies, and to foster a healthcare environment that respects and supports their autonomy and dignity.
Topics: Humans; Disabled Persons; Sexuality; Human Rights; Sexual Health; Personal Autonomy; Global Health; Health Services Accessibility
PubMed: 38937839
DOI: 10.1186/s12939-024-02219-y -
BMC Medical Informatics and Decision... Jun 2024An ever-increasing amount of data on a person's daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the...
An ever-increasing amount of data on a person's daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the full potential of data on daily functioning cannot yet be exploited as it is mostly stored in an unstructured and inaccessible manner. The integration of these data, and thereby expedited knowledge discovery, is possible by the introduction of functionomics as a complementary 'omics' initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person's daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).A prerequisite for making functionomics operational are the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. This paper illustrates a step by step application of the FAIR principles for making functionomics data machine readable and accessible, under strictly certified conditions, in a practical example. Establishing more FAIR functionomics data repositories, analyzed using a federated data infrastructure, enables new knowledge generation to improve health and person-centered healthcare. Together, as one allied health and healthcare research community, we need to consider to take up the here proposed methods.
Topics: Humans; Activities of Daily Living; Patient-Centered Care; International Classification of Functioning, Disability and Health
PubMed: 38937817
DOI: 10.1186/s12911-024-02584-2 -
International Journal of Environmental... Jun 2024Community design features, such as sidewalks and street crossings, present significant challenges for individuals with disabilities, hindering their physical performance...
BACKGROUND
Community design features, such as sidewalks and street crossings, present significant challenges for individuals with disabilities, hindering their physical performance and social integration. However, limited research has been conducted on the application of Universal Design (UD) to address these challenges, particularly concerning specific demographic groups and population cohorts. Understanding the influence of environmental features on physical performance is crucial for developing inclusive solutions like UD, which can enhance usability and social integration across diverse populations.
OBJECTIVE
This study aims to bridge this gap by investigating the complex relationships between environmental barriers, health conditions, and routine activity performance. An index was developed to evaluate users' UD performance based on functional capacity, providing scientifically rigorous and objectively measured evidence of UD effectiveness in creating inclusive built environments.
METHOD
Using data from the Problematic Activities Survey (PAS) conducted in the U.S., Canada, and Australia and targeting individuals with and without functional limitations, multinomial logit models were employed to estimate the probabilities of encountering performance problems. This analysis led to the development of the Problematic Performance Value (PPV) score.
RESULTS
The results demonstrated significant disparities in PPVs across various health conditions, particularly concerning curb ramps. Individuals facing mobility issues in their legs/feet, arms/hands, or back/neck encounter more pronounced challenges, especially when curb ramps lack proper design elements. Similarly, individuals with vision impairments face heightened difficulties with traffic signals, particularly due to issues with audible signal systems. These findings underscore the importance of addressing micro-level environmental challenges to accommodate individuals with varying functional capacities effectively.
CONCLUSIONS
By providing insights into the most problematic daily activities encountered by diverse populations, the PPV score serves as a valuable indicator for guiding environmental design improvements and promoting equitable space usage. This can be used to guide improved UD solutions and decide areas of concentration by providing generalized information on specific environmental features that contribute to user performance.
Topics: Humans; Male; Adult; Middle Aged; Female; Aged; Australia; Disabled Persons; Young Adult; Canada; Adolescent; United States; Physical Functional Performance; Built Environment; Environment Design; Health Status
PubMed: 38929010
DOI: 10.3390/ijerph21060764 -
International Journal of Environmental... May 2024The National Disability Insurance Scheme (NDIS) ushered in a transformative era in disability services in Australia, requiring new workforce models to meet evolving... (Review)
Review
The National Disability Insurance Scheme (NDIS) ushered in a transformative era in disability services in Australia, requiring new workforce models to meet evolving participant needs. Therapy Assistants are utilised to increase the capacity of therapy services in areas of workforce shortage. The governance arrangements required to support this emergent workforce have received limited attention in the literature. This review examined the key components and contextual factors of governance in rural settings, specifically focusing on therapy support workers under the guidance of allied health professionals in rural and remote areas. Guided by the social model of disability and the International Classification of Functioning, Disability and Health, a realist perspective was used to analyse 26 papers (after deduplication), mostly Australian and qualitative, with an emphasis on staff capabilities, training, and credentialling. Success measures were often vaguely defined, with most papers focusing on staff improvement and few focusing on client or organisational improvement. Consistent staffing, role clarity, community collaboration, and supportive leadership were identified as enabling contexts for successful governance of disability therapy support workers in rural areas. Investment in capability (soft skills) development, tailored training, competency assessment, credentialling, and supervision were identified as key activities that, when coupled with the identified enabling contexts, were likely to influence staff, client and organisational outcomes. Further research is warranted to explore long-term impacts of governance arrangements, educational program accountability, and activities targeted at enhancing staff capabilities.
Topics: Humans; Disabled Persons; Australia; Rural Health Services; Rural Population; Allied Health Personnel
PubMed: 38928939
DOI: 10.3390/ijerph21060693 -
International Journal of Environmental... May 2024The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents... (Review)
Review
PURPOSE
The purpose of this study is to summarize the ICF foci, looking beyond body structures and function, and to analyze who has been assessed in research about adolescents and young adults (AYAs) with CP in the phase of transition to adulthood.
METHOD
Medline, EMBASE, PsycINFO, and CINAHL databases were searched using terms related to cerebral palsy, adolescents/young adults, health development, participation, and independence. Studies including youth with CP (13-30 years old) published in English from 2014 to 2021 were considered. The methods of assessment reported in the included studies were used to identify the ICF foci and who was assessed.
RESULTS
In this study, 86 studies were reviewed. The main ICF foci are activity and participation (51% of the studies), personal factors (23%), ICF not covered (14%), ICF not defined (9%), with environmental factors being the least focused ICF component (3%). Most studies assessed AYAs directly (49% of studies).
CONCLUSIONS
Activity- and participation-related constructs are the leading research focus of studies, and more attention is needed concerning environmental factors. AYAs are the main source of information, and the perspectives of other key figures are also being valued. To bridge the gap between child and adult health care, a broader view of health development and approaches to explore AYA developmental issues must be taken.
Topics: Cerebral Palsy; Humans; Adolescent; Young Adult; Adult; Disability Evaluation; International Classification of Functioning, Disability and Health; Disabled Persons
PubMed: 38928917
DOI: 10.3390/ijerph21060670