Supporting African communities to increase resilience and mental health of kids with developmental disabilities and their caregivers using the World Health Organization's Caregiver Skills Training Programme (SPARK trial): study protocol for a cluster rand
Most children with developmental disabilities (DD) live in low- and middle-income countries, but access to services is limited, impacting their ability to thrive. Pilot study findings of the World Health Organization's Caregiver Skills Training (WHO CST) intervention, which equips caregivers with strategies to facilitate learning and adaptive behaviours in children with DD, are promising but evidence from an appropriately powered trial delivered by non-specialist facilitators is lacking. This study will investigate the effectiveness and the resource impacts and costs and consequences of the WHO CST intervention in four sites in rural and urban Kenya and Ethiopia.
This is a 2-arm multi-site hybrid type-1 effectiveness implementation cluster randomised controlled superiority trial. After baseline assessments (T0) are completed by participants in clusters comprising 7 to 10 caregiver-child dyads, the clusters will be randomised to either the WHO CST intervention arm or a waitlist enhanced care as usual control arm. Further assessments will be completed at endpoint (T1, 18 ± 2 weeks after randomisation) and follow-up (T2, 44 ± 2 weeks after randomisation). The intervention comprises three individualised home visits and nine group sessions with trained non-specialist facilitators. Participants in the control arm will receive the intervention after completing follow-up assessments. We aim to recruit 544 child-caregiver dyads, evenly distributed across the two arms and countries. The co-primary outcomes are the child-focused Child Behavior Checklist (assessing emotional and behavioural problems) and the caregiver-focused Pediatric Quality of Life Inventory (assessing caregiver quality of life), both assessed at endpoint. Secondary outcome measures comprise the two co-primary outcomes at follow-up and ten additional outcome measures at endpoint, assessing stigma-based experiences, depressive symptoms, household food insecurity, child disciplinary strategies and beliefs, CST knowledge and skill competencies, caregiver and child quality of life, social support, and children's communication modes and functions. After quantitative follow-up assessments are completed, a mixed-methods evaluation approach will be used to investigate implementation processes and acceptability, feasibility, and potential sustainability of the intervention.
The study's findings will provide evidence of the effectiveness and resource impacts and costs and consequences of a non-specialist-delivered intervention in under-resourced contexts in one low-income and one middle-income country in East Africa. Findings will inform future research, intervention, and policy efforts to support children with DD and their families in under-resourced majority world contexts.
Pan African Clinical Trial Registry PACTR202310908063134. Registered on October 16, 2023.
Washington-Nortey M
，Angwenyi V
，Demissie M
，Mwangome E
，Eshetu T
，Negussie H
，Goldsmith K
，Healey A
，Feyasa M
，Medhin G
，Belay A
，Azmeraw T
，Getachew M
，Birhane R
，Nasambu C
，Kifle TH
，Kairu A
，Mkubwa B
，Girma F
，Abdurahman R
，Tsigebrhan R
，Tesfaye L
，Mbonani L
，Seward N
，Charman T
，Pickles A
，Salomone E
，Servili C
，Barasa E
，Newton CR
，Hanlon C
，Abubakar A
，Hoekstra RA
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《Trials》
Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017.
The Global Burden of Diseases, Injuries, and Risk Factors Study 2017 (GBD 2017) includes a comprehensive assessment of incidence, prevalence, and years lived with disability (YLDs) for 354 causes in 195 countries and territories from 1990 to 2017. Previous GBD studies have shown how the decline of mortality rates from 1990 to 2016 has led to an increase in life expectancy, an ageing global population, and an expansion of the non-fatal burden of disease and injury. These studies have also shown how a substantial portion of the world's population experiences non-fatal health loss with considerable heterogeneity among different causes, locations, ages, and sexes. Ongoing objectives of the GBD study include increasing the level of estimation detail, improving analytical strategies, and increasing the amount of high-quality data.
We estimated incidence and prevalence for 354 diseases and injuries and 3484 sequelae. We used an updated and extensive body of literature studies, survey data, surveillance data, inpatient admission records, outpatient visit records, and health insurance claims, and additionally used results from cause of death models to inform estimates using a total of 68 781 data sources. Newly available clinical data from India, Iran, Japan, Jordan, Nepal, China, Brazil, Norway, and Italy were incorporated, as well as updated claims data from the USA and new claims data from Taiwan (province of China) and Singapore. We used DisMod-MR 2.1, a Bayesian meta-regression tool, as the main method of estimation, ensuring consistency between rates of incidence, prevalence, remission, and cause of death for each condition. YLDs were estimated as the product of a prevalence estimate and a disability weight for health states of each mutually exclusive sequela, adjusted for comorbidity. We updated the Socio-demographic Index (SDI), a summary development indicator of income per capita, years of schooling, and total fertility rate. Additionally, we calculated differences between male and female YLDs to identify divergent trends across sexes. GBD 2017 complies with the Guidelines for Accurate and Transparent Health Estimates Reporting.
Globally, for females, the causes with the greatest age-standardised prevalence were oral disorders, headache disorders, and haemoglobinopathies and haemolytic anaemias in both 1990 and 2017. For males, the causes with the greatest age-standardised prevalence were oral disorders, headache disorders, and tuberculosis including latent tuberculosis infection in both 1990 and 2017. In terms of YLDs, low back pain, headache disorders, and dietary iron deficiency were the leading Level 3 causes of YLD counts in 1990, whereas low back pain, headache disorders, and depressive disorders were the leading causes in 2017 for both sexes combined. All-cause age-standardised YLD rates decreased by 3·9% (95% uncertainty interval [UI] 3·1-4·6) from 1990 to 2017; however, the all-age YLD rate increased by 7·2% (6·0-8·4) while the total sum of global YLDs increased from 562 million (421-723) to 853 million (642-1100). The increases for males and females were similar, with increases in all-age YLD rates of 7·9% (6·6-9·2) for males and 6·5% (5·4-7·7) for females. We found significant differences between males and females in terms of age-standardised prevalence estimates for multiple causes. The causes with the greatest relative differences between sexes in 2017 included substance use disorders (3018 cases [95% UI 2782-3252] per 100 000 in males vs s1400 [1279-1524] per 100 000 in females), transport injuries (3322 [3082-3583] vs 2336 [2154-2535]), and self-harm and interpersonal violence (3265 [2943-3630] vs 5643 [5057-6302]).
Global all-cause age-standardised YLD rates have improved only slightly over a period spanning nearly three decades. However, the magnitude of the non-fatal disease burden has expanded globally, with increasing numbers of people who have a wide spectrum of conditions. A subset of conditions has remained globally pervasive since 1990, whereas other conditions have displayed more dynamic trends, with different ages, sexes, and geographies across the globe experiencing varying burdens and trends of health loss. This study emphasises how global improvements in premature mortality for select conditions have led to older populations with complex and potentially expensive diseases, yet also highlights global achievements in certain domains of disease and injury.
Bill & Melinda Gates Foundation.
GBD 2017 Disease and Injury Incidence and Prevalence Collaborators
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Calculating the social impact of home automation for people with disability: A social return on investment study.
Home automation can deliver important outcomes for people with disabilities, including enhanced independence. Despite the millions of dollars spent on home automation in Australia and other developed nations, to date, there has been no economic evaluation of this type of assistive technology.
A social return on investment analysis of home automation study was undertaken. Primary data were collected using qualitative interviews with home automation consumers and other key stakeholders, including occupational therapists, a spinal rehabilitation physician, peer support advocate, and managers and technical personnel from home automation providers (n = 17). The analysis was supported by (1) secondary data from a scoping review on outcomes from home automation and (2) additional literature searches to identify suitable financial proxies and to make estimates of the proportion of home automation users expected to experience each outcome. A scenario approach was used with three home automation scenarios developed with increasing complexity and costs to calculate the social return on investment.
Eight outcomes from the use of home automation were identified, including reduced reliance on carers and family members, increased independence, and improved energy and comfort. The social return on investment ranged from $38.80 (low cost) to $15.10 (high cost) for every $1 invested across a 10-year benefit period, with the financial proxy for reduced care attendant hours contributing the most to the social return ratio. Even the highest cost scenario was repaid in social value within the first year of the benefit period.
This study suggests that home automation represents a sound investment and has a significant impact on the overall quality of life of people with disabilities. Focusing on the financial savings in care attendant hours alone should be compelling evidence for funders to recognise home automation's value and continue to fund this assistive technology.
A consumer representative was a member of the project steering group, which supported the research team at all stages of the project.
When people get injured, their disability can stop them doing things around the home that they used to be able to do. Technology can help people with disabilities do things like open and close doors and turn off taps by pressing a button, so they do not have to wait for someone to help them. This technology can be expensive, but no one has looked at if it is worth the money. We spoke to some people with disabilities who used this type of technology, and they told us their lives were better now they used this technology. For example, they told us they were able to do things for themselves, they did not need carers as much, and they had better mental health. We spoke to businesses about the costs of different types of technology that can be used in the home. We then put a dollar value on the ways people with disabilities told us their lives were better. For example, for better mental health, we worked out how much it would cost to see a psychologist for 1 year. We found that the dollar value of the ways in which people with disabilities' lives were improved was at least 15 times more than the costs of the technology. This study therefore shows that this technology is worth the money and improves the lives of people with disabilities following serious injury.
Hutchinson C
，Cleland J
，Williams PAH
，Manuel K
，Laver K
... -
《-》
ResearchGate
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