Personal assistance for adults (19-64) with both physical and intellectual impairments

There is a high incidence of impairments among working age adults, and their prevalence is increasing in the West. Many countries offer personal assistance in the form of individualised support for people living in the community by a paid assistant other than a healthcare professional for at least 20 hours per week.

To assess the effectiveness of personal assistance for adults with physical and intellectual impairments, and the impacts of personal assistance on others, compared to other interventions.

Electronic databases including CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, Dissertation Abstracts International and a variety of specialist Swedish databases were searched from 1980 to June 2005; reference lists were checked; 345 experts, organisations, government bodies and charities were contacted in an attempt to locate relevant research.

Adults (19-64) with permanent physical and intellectual impairments living in the community who require assistance to perform tasks of daily living (e.g., bathing and eating) and participate in normal activities. Controlled studies of personal assistance in which participants were prospectively assigned to study groups and in which control group outcomes were measured concurrently with intervention group outcomes were included.

Titles and abstracts were examined by two reviewers. Outcome data were extracted. Because no two studies made the same comparison, studies were not combined for meta-analyses. Studies were assessed for bias. Results and potential sources of bias are presented for included studies.

Two studies involving 1002 participants compared personal assistance versus usual care. Whilst personal assistance was generally preferred over other services, some people prefer other services. Personal assistance may have some benefits for some recipients and may benefit caregivers. Paid assistance probably substitutes for informal care and may cost government more than alternatives; however, some evidence suggests it may reduce costs. The total costs to recipients and society are unknown.

Research in this field is limited. Personal assistance is expensive and difficult to organise, especially in places that do not already have services in place, but its total cost relative to other services is unknown. When implementing new programmes, recipients could be randomly assigned to different forms of assistance (e.g. organised by individual users versus organised through a cooperative). While advocates may support personal assistance for myriad reasons, this review demonstrates that further studies are required to determine which models of assistance are most effective and efficient for particular people.