Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review

Abstract

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

Aging Well Together: Promoting Brain Health for Aging Individuals with IDD and Their Families

“…1,2,3 While a large majority of research on IDD has focused on childhood, it is crucial to recognize that individuals with IDD spend most of their lives as adults and continue to encounter barriers throughout their lifespan. 4,5 . Quality of life for people with IDD continues to be lower than that of the general population 6,7 and despite the increasing life expectancy among individuals with IDD, there is still much we do not know about how to support aging people with IDD.…”

Identification of the needs of children with neurodisability and their families at different stages of development: A qualitative study protocol

“…Neurodisability is an umbrella term attributed to brain or neuromuscular system impairments characterized by functional limitations and difficulties with movement, cognition, hearing and vision, communication, emotion, and behavior [1]. Traditionally, medical efforts have focused on diagnosing and treating chronic developmental disorders that cause neurodisability (e.g., intellectual disability, Down syndrome, cerebral palsy, spina bifida, and autism spectrum disorder [1]) from a biomedical perspective, with less attention paid to the functional capacities of individuals and their contextual determinants [2]. However, these aspects are important, especially in the management of childhood neurodisability [3], as parents are the main support providers for children with neurodisabilities at all stages of development [4].…”