Biomedical Engineering Reference
In-Depth Information
caregivers in preserving or enabling participation of assistance users began with the
emergence of family-centered care in pediatrics (Dunst et al. 1988) and continued with
broadening of the term “client” to include family members in definitions of client-centered
practice (Townsend et al. 1997). Some scholars have recommended a shift from a patient-
focused approach to a patient-and-caregiver approach in the field of AT (Demers et al.
2004; Pettersson et al. 2005; Gooberman-Hill and Ebrahim 2006). Unfortunately, in cur-
rent clinical practice, the inclusion of caregivers in the AT provision process is rather hit
or miss, and scant attention has been paid to the effect of AT on assistance users' human
helpers, especially informal caregivers (McWilliam et al. 2000; Henderson et al. 2008).
Some qualitative research has explored the impact of assistive device use on care-
givers. Among caregivers of individuals that have had a stroke (Pettersson et al. 2005;
Rudman et al. 2006), studies have indicated that caregivers had ambivalent feelings about
assistive devices. Although most participants were grateful for the benefits that these
devices provided, their use was sometimes accompanied by anxiety about the possibil-
ity of injury, accessibility issues, and the social stigma experienced by some individuals
who use AT in the community. In contrast, qualitative studies with children and parents
have found manual (Glumac et al. 2009) and power wheelchairs (Wiart et al. 2004) to be
generally beneficial.
Cross-sectional studies based on national survey data have examined the relationship
between AT use and informal caregiving. Data from some of these studies suggest that AT
use helps caregivers by substituting for some of the physical and emotional effort entailed
in supporting an individual with disabilities (Agree and Freedman 2000; Allen et al. 2001,
2006; Agree et al. 2004, 2005). Although these studies suggest that AT has a positive impact
on informal caregivers, there are two principal limitations. The studies rely on cross-
sectional data, which limits the development of causal explanations. Furthermore, the
impact of AT use on caregivers is inferred from responses to very few queries, principally
dealing with the number of hours of assistance provided. This excludes measurement of
other important outcomes, such as reduced physical demands on helpers, diminished
psychological stress, and satisfaction in providing help. The neglect of such potential out-
comes results in an incomplete portrayal of the benefits of AT for caregivers.
Other cross-sectional studies have explored AT use and informal caregiver assistance.
Chen and colleagues (1999) examined how physically impaired assistance users (
n
= 20)
involved caregivers in accessing or using their assistive devices and how assistance users
and caregivers perceived the value of AT. Their results indicated that AT might reduce
assistance users' dependence on human assistance and some of the perceived burden
of family members and friends. In a descriptive study, Messecar et al. (2002) identified
47 home modification strategies including the use of assistive devices, providing assis-
tance, and making changes to the home environment that were used by caregivers of
community-dwelling elders with a variety of impairments. Kane et al. (2001) interviewed
30 caregivers about their perceptions of device use. The caregivers indicated that devices
were generally beneficial for assistance users but were not always covered by insurance.
Among a subsample of individuals with spinal cord injury that had a decline in physical
function over the last five years, half required additional assistance with ADL (Thompson
1999). Among these individuals, family members were the primary form of assistance;
however, the use of AT increased over time (Thompson 1999). The internal validity of the
above studies is constrained by their use of descriptive rather than experimental designs
and by their small sample sizes. Furthermore, in several of these studies, the relationship
among the assistance user, assistive device usage, and the caregiver was not explicitly
examined.
