Personal Assistance for Adults (19‐64) with both Physical and Intellectual Impairments

Personal assistance is here defined as paid support of at least 20 hours per week for people with impairments. This Cochrane/Campbell systematic review investigated the effectiveness of personal assistance versus any other form of care for adults with both physical and intellectual impairments. A literature search identified 2 studies that met the inclusion criteria, which included 1,002 participants. They suggested that personal assistance may be preferred over other services; however, some people prefer other models of care. This review indicates that personal assistance may have some benefits for some recipients and their informal caregivers. Paid assistance might substitute for informal care and cost government more than alternative arrangements; however, the relative total costs to recipients and society are unknown. Abstract Background 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. Objectives 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. Search methods 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. Selection criteria 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. Data collection and analysis 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. Results 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. Authors’ conclusions 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.