AIM
To review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well‐being, impact on family, and ...economic and service implications.
Method
We comprehensively searched multiple databases. Eligible studies evaluated parent‐to‐parent support and reported on the psychological health and experience of giving or receiving support. There were no limits on the child's condition, study design, language, date, or setting. We sought to aggregate quantitative data; findings of qualitative studies were combined using thematic analysis. Qualitative and quantitative data were brought together in a narrative synthesis.
Results
Seventeen papers were included: nine qualitative studies, seven quantitative studies, and one mixed‐methods evaluation. Four themes were identified from qualitative studies: (1) shared social identity, (2) learning from the experiences of others, (3) personal growth, and (4) supporting others. Some quantitative studies reported a positive effect of peer support on psychological health and other outcomes; however, this was not consistently confirmed. It was not possible to aggregate data across studies. No costing data were identified.
Conclusion
Qualitative studies strongly suggest that parents perceive benefit from peer support programmes, an effect seen across different types of support and conditions. However, quantitative studies provide inconsistent evidence of positive effects. Further research should explore whether this dissonance is substantive or an artefact of how outcomes have been measured.
The critical importance of safe and affordable access to water, sanitation and hygiene (WASH) is highlighted in Goal 6 of the Sustainable Development Goals, which seeks to achieve universal and ...equitable access for all by 2030. However, people with disabilities-who comprise 15% of the global population-frequently face difficulties meeting their WASH needs. Unmet WASH needs amongst people with disabilities may not be captured through current approaches to tracking progress towards Goal 6, which focus on household- rather than individual-level access.
To evaluate access to safe water, sanitation and hygiene (WASH), at the individual- and household-level, amongst people with disabilities in the Tanahun district of Nepal.
A population-based survey of disability was conducted from August-October 2016 to evaluate access to improved water and sanitation facilities between households with members with disabilities (n = 198) and those without (n = 1,265) in the Tanahun district of Nepal. A nested case-control then compared individual-level access between cases aged 15 and above with disabilities (n = 192) and age-sex-location matched controls without disabilities (n = 189), using the newly developed 21-item "Quality of WASH Access" questionnaire. Multivariate regression was used to compare household- and individual-level indicators between people and households with and without disabilities. In-depth interviews with 18 people with disabilities and their caregivers was conducted to assess the acceptability and appropriateness of the "Quality of WASH Access" questionnaire.
There were no significant differences between households with and without members with disabilities in access to an improved sanitation facility or water source. However, at the individual-level, people with disabilities experienced significantly greater difficulties accessing water, sanitation and hygiene compared to people without disabilities (p<0.001 for all three scores). Amongst people with disabilities, water difficulty scores were associated with having a physical impairment and greater disability severity; sanitation difficulty scores were associated with lower socioeconomic status and physical or self-care limitations; and hygiene difficulty scores were positively associated with self-care limitations and lower socioeconomic status, and inversely associated with hearing impairments. Qualitative research found the "Quality of WASH Access" questionnaire was well understood by participants and captured many of the challenges they faced. Additional challenges not covered by the tool included: (1) time spent on WASH, (2) consistency of access, (3) sufficiency of access, and (4) dignity of access.
People with disabilities face substantial challenges to meeting their WASH needs, particularly in using services autonomously, consistently, hygienically, with dignity and privacy, and without pain or fear of abuse. These challenges are not captured through household-level data, and so individual-level WASH access are needed to monitor progress towards universal WASH access. The Quality of WASH Access questionnaire may provide a useful data collection tool.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The current research focuses on trends of Internet adoption and digital uses among people with disabilities over a thirteen-year period.
The study is based on data elicited from a repeated ...cross-sectional study collected by means of Annual Social Surveys conducted by Israel's Central Bureau of Statistics between 2003 and 2015. The sample included 95,145 respondents, among them 22,290 respondents with disabilities.
The rate of Internet access and digital uses increased continuously among disabled people; however the gap between them and the population without disabilities was preserved. We found that Internet use depends on a number of socio-economic characteristic. Socio-demographic variables were much more powerful in predicting Internet use vs non-use among the total population, compared to predicting digital uses among Internet users.
Our findings make it possible to identify disadvantaged groups in which disability intersects with low rates of Internet adoption and belonging to unprivileged groups: Arabs, the religious, the elderly, lower SES individuals. The effects of most of these variables did not change in the period under study. Generally, we recommend finding a way to promote courses that focus on promoting digital literacy in general and eHealth literacy in particular in small groups of people of similar age, digital skill level and motor / health problems. Considering the high representation of Arabs among people with disabilities and lower rates of Internet adoption and use among Arabs, it is recommended that efforts continue to increase the scope and quality of Arabic language content published on Israeli eHealth sites. In order to diminish income-based digital divide we recommend providing publicly accessible free information technologies, for example, in community clubs, senior citizen clubs, and independent- and assisted- living projects for the disabled.
Summary Background The balance of risk and benefit from early neurosurgical intervention for conscious patients with superficial lobar intracerebral haemorrhage of 10–100 mL and no intraventricular ...haemorrhage admitted within 48 h of ictus is unclear. We therefore tested the hypothesis that early surgery compared with initial conservative treatment could improve outcome in these patients. Methods In this international, parallel-group trial undertaken in 78 centres in 27 countries, we compared early surgical haematoma evacuation within 12 h of randomisation plus medical treatment with initial medical treatment alone (later evacuation was allowed if judged necessary). An automatic telephone and internet-based randomisation service was used to assign patients to surgery and initial conservative treatment in a 1:1 ratio. The trial was not masked. The primary outcome was a prognosis-based dichotomised (favourable or unfavourable) outcome of the 8 point Extended Glasgow Outcome Scale (GOSE) obtained by questionnaires posted to patients at 6 months. Analysis was by intention to treat. This trial is registered, number ISRCTN22153967. Findings 307 of 601 patients were randomly assigned to early surgery and 294 to initial conservative treatment; 298 and 291 were followed up at 6 months, respectively; and 297 and 286 were included in the analysis, respectively. 174 (59%) of 297 patients in the early surgery group had an unfavourable outcome versus 178 (62%) of 286 patients in the initial conservative treatment group (absolute difference 3·7% 95% CI −4·3 to 11·6, odds ratio 0·86 0·62 to 1·20; p=0·367). Interpretation The STICH II results confirm that early surgery does not increase the rate of death or disability at 6 months and might have a small but clinically relevant survival advantage for patients with spontaneous superficial intracerebral haemorrhage without intraventricular haemorrhage. Funding UK Medical Research Council.
This review discusses the interplay between multimorbidity (i.e. co‐occurrence of more than one chronic health condition in an individual) and functional impairment (i.e. limitations in mobility, ...strength or cognition that may eventually hamper a person's ability to perform everyday tasks). On the one hand, diseases belonging to common patterns of multimorbidity may interact, curtailing compensatory mechanisms and resulting in physical and cognitive decline. On the other hand, physical and cognitive impairment impact the severity and burden of multimorbidity, contributing to the establishment of a vicious circle. The circle may be further exacerbated by people's reduced ability to cope with treatment and care burden and physicians’ fragmented view of health problems, which cause suboptimal use of health services and reduced quality of life and survival. Thus, the synergistic effects of medical diagnoses and functional status in adults, particularly older adults, emerge as central to assessing their health and care needs. Furthermore, common pathways seem to underlie multimorbidity, functional impairment and their interplay. For example, older age, obesity, involuntary weight loss and sedentarism can accelerate damage accumulation in organs and physiological systems by fostering inflammatory status. Inappropriate use or overuse of specific medications and drug–drug and drug–disease interactions also contribute to the bidirectional association between multimorbidity and functional impairment. Additionally, psychosocial factors such as low socioeconomic status and the direct or indirect effects of negative life events, weak social networks and an external locus of control may underlie the complex interactions between multimorbidity, functional decline and negative outcomes. Identifying modifiable risk factors and pathways common to multimorbidity and functional impairment could aid in the design of interventions to delay, prevent or alleviate age‐related health deterioration; this review provides an overview of knowledge gaps and future directions.
Content List – Read more articles from the symposium: “Multimorbidity research at the cross‐roads: developing the evidence for clinical practice and health policy”.
Purpose/Objective: This study aimed to describe the perceived stress levels and coping mechanisms related to COVID-19, and whether coping is related to well-being in people with self-reported chronic ...conditions and disabilities. Research Method/Design: A cross-sectional survey design was implemented. The total number of participants were 269 individuals with self-reported disabilities and chronic conditions (Mage = 39.37, SDage = 12.18). We examined the relationship between perceived stress and coping strategies related to COVID-19, and which COVID-19 coping strategies were associated with well-being after controlling for demographic and psychological characteristics. Results: Correlation analyses demonstrated that perceived stress related to COVID-19 was positively associated with coping strategies including self-distraction, denial, substance use, behavioral disengagement, venting, planning, religion, and self-blame. Further, hierarchical regression results demonstrated that active coping, denial, use of emotional support, humor, religion, and self-blame were associated with participants' well-being after controlling for demographic and psychological characteristics. Conclusions/Implications: This exploratory study findings suggest that measuring and quantifying COVID-19 related stress and coping strategies in individuals with chronic conditions and disabilities can help clinicians and researchers understand potential effects of COVID-19 among people with chronic conditions and disabilities.
Impact and Implications
The current exploratory study extends the literature by exploring the perceived impact of COVID-19, stress levels and coping mechanisms related to COVID-19, and which coping strategies are associated with well-being in individuals with self-reported chronic conditions and disabilities. Active coping, denial, use of emotional support, humor, and religion coping were found to be positively correlated with well-being scores. Self-blame was found to be negatively correlated with well-being scores.
Over the last decade, mobile health applications (mHealth App) have evolved exponentially to assess and support our health and well-being. This paper presents an Artificial Intelligence (AI)-enabled ...mHealth app rating tool, called ACCU.sup.3 RATE, which takes multidimensional measures such as user star rating, user review and features declared by the developer to generate the rating of an app. However, currently, there is very little conceptual understanding on how user reviews affect app rating from a multi-dimensional perspective. This study applies AI-based text mining technique to develop more comprehensive understanding of user feedback based on several important factors, determining the mHealth app ratings. Based on the literature, six variables were identified that influence the mHealth app rating scale. These factors are user star rating, user text review, user interface (UI) design, functionality, security and privacy, and clinical approval. Natural Language Toolkit package is used for interpreting text and to identify the App users' sentiment. Additional considerations were accessibility, protection and privacy, UI design for people living with physical disability. Moreover, the details of clinical approval, if exists, were taken from the developer's statement. Finally, we fused all the inputs using fuzzy logic to calculate the new app rating score. ACCU.sup.3 RATE concentrates on heart related Apps found in the play store and App gallery. The findings indicate the efficacy of the proposed method as opposed to the current device scale. This study has implications for both App developers and consumers who are using mHealth Apps to monitor and track their health. The performance evaluation shows that the proposed mHealth scale has shown excellent reliability as well as internal consistency of the scale, and high inter-rater reliability index. It has also been noticed that the fuzzy based rating scale, as in ACCU.sup.3 RATE, matches more closely to the rating performed by experts.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Abstract
Objectives
To investigate whether baseline social participation modifies the effect of a long-term structured physical activity (PA) program on major mobility disability (MMD).
Methods
1,635 ...sedentary adults (70–89 years) with physical limitations were randomized to either a structured PA or health education (HE) intervention. Social participation was defined categorically at baseline. High social participation was defined as attending organized group functions at least once per week and visiting with noncohabitating friends and family ≥7 hr per week. Anything less was considered limited social participation. Participants performed a standardized walking test at baseline and every 6 months for up to 42 months. MMD was defined as the loss in the ability to walk 400 m.
Results
There was a significant intervention by social participation interaction (p = .003). Among individuals with high levels of social participation, those randomized to PA had significantly lower incidence of MMD (hazard ratio HR, 0.43 95% confidence interval (CI), 0.27–0.68; p < .01) than those randomized to HE. Individuals with limited social participation showed no mobility benefit of the PA intervention when compared with their HE counterparts (HR, 0.92 95% CI, 0.77–1.11; p = .40).
Discussion
Our findings suggest that baseline social participation is an important factor for the success of a PA intervention aimed at delaying mobility disability.
Hip fractures are an increasingly common consequence of falls in older people that are associated with a high risk of death and reduced function. This review aims to quantify the impact of hip ...fracture on older people's abilities and quality of life over the long term.
Studies were identified through PubMed and Scopus searches and contact with experts. Cohort studies of hip fracture patients reporting outcomes 3 months post-fracture or longer were included for review. Outcomes of mobility, participation in domestic and community activities, health, accommodation or quality of life were categorised according to the World Health Organization's International Classification of Functioning and synthesised narratively. Risk of bias was assessed according to four items from the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement.
Thirty-eight studies from 42 publications were included for review. Most followed a clearly defined sample from the time of fracture. Hip fracture survivors experienced significantly worse mobility, independence in function, health, quality of life and higher rates of institutionalisation than age matched controls. The bulk of recovery of walking ability and activities for daily living occurred within 6 months after fracture. Between 40 and 60 % of study participants recovered their pre-fracture level of mobility and ability to perform instrumental activities of daily living, while 40-70 % regained their level of independence for basic activities of daily living. For people independent in self-care pre-fracture, 20-60 % required assistance for various tasks 1 and 2 years after fracture. Fewer people living in residential care recovered their level of function than those living in the community. In Western nations, 10-20 % of hip fracture patients are institutionalised following fracture. Few studies reported impact on participation in domestic, community, social and civic life.
Hip fracture has a substantial impact on older peoples' medium- to longer-term abilities, function, quality of life and accommodation. These studies indicate the range of current outcomes rather than potential improvements with different interventional approaches. Future studies should measure impact on life participation and determine the proportion of people that regain their pre-fracture level of functioning to investigate strategies for improving these important outcomes.
PDF
