Advances in medical technology have increased survival rates for traumatic injuries and as a result, more people are living longer with an SCI (Adams and Beatty 1998). However, functional impairment due to SCI may necessitate the use of attendant care or personal assistance services (PAS). Attendant care can be broadly defined as home-based support which assists individuals to perform tasks they would otherwise not be able to perform themselves. Attendant care service providers are usually either non-paid family members or paid workers who help with everyday personal or self-care tasks such as bathing, dressing, grooming, and transfers (Berry et al. 1995; Cockerill and Durham 1992; Meyer et al. 2007). They may also assist with instrumental activities of daily living such as cooking, chores, and shopping (Berry et al. 1995; Cockerill and Durham 1992). In this way, personal assistance or attendant care facilitates community integration and social participation (previously known as independent living), and which may also include accommodated employment and/or adapted sports and recreation (Adams and Beatty 1998). In addition, home-based attendant care has long been recognized as more cost-effective when compared to institutional costs (Hoeman and Winters 1990).
It should be noted that independent living does not require a person be able to carry out their routine tasks alone without help from someone else. The emphasis of independent living is placed on the individual’s right to decide when, where, and how tasks are performed (Litvak et al. 1987). Indeed, recipients of paid personal care assistance (PCA) have emphasized the importance of being in control of training the assistant. How the assistance is to be provided is discussed with the attendant at the outset of the professional relationship (Meyer et al. 2007). Some individuals prefer untrained attendants so they can train and direct them to suit their particular needs. Being able to direct attendants to assist with managing personal care post-SCI maximizes the ability to promote good health and enables the person with the SCI to live more independently and productively. Personal care attendants may be skilled or unskilled workers, licensed or unlicensed, registered nurses, nursing assistants, nurse’s aides, home health aides, or paid or unpaid family members (Berry et al. 1995; Pomeranz et al. 2006). Typically, individuals with tetraplegia in need of 24-hour care will require such care from nurses with specialized training, whereas persons with lower-level injuries may be fairly self-sufficient and require less-skilled assistance with daily tasks.
Attendant care is a common and essential aspect of daily living for many individuals with a SCI (Berry et al. 1995). The United States Federal Bureau of Statistics predicted that overall employment of home health aides and personal care aides will grow 41 percent from 2016 to 2026, much faster than the average for all occupations (U.S. Bureau of Labor Statistics, Employment Projections program; accessed March 12, 2019).). Attendant care services can be expensive and are therefore an important financial as well as social consideration. A recent report by Krueger et al. (2013) reported that estimated lifetime attendant care costs in Canada for tetraplegia are: $1,021,420 (complete SCI) and $797,590 (incomplete SCI), for paraplegia are: $294,418 (complete SCI) and $422,548 (incomplete SCI).
For comparative purposes it is instructive to know the annual mean cost of PAS for individuals with high tetraplegia (C1-C4) was $92,441 while average costs were $2,184 for persons with paraplegia (T1-S5). Another study found a range of $38-$798 spent per day on attendant care (Mattson-Prince 1997). A third costing study, also from the 1990’s, found 44% of total costs related to SCI were for attendant care (Harvey et al. 1992).
Regardless of cost, PCA is essential for many people with SCI, and is correlated with a variety of factors. Previous studies have found gender may influence PCA use; men tend to rely on family members whereas women are more likely to pay for services from an outside agency (Shackleford et al. 1998). A 1992 study revealed approximately two-thirds of individuals with SCI received an average of 25 hours of paid or unpaid weekly PCA; more than half received 40 hours per week or less. The majority of this care was provided voluntarily (Harvey et al. 1992). Family caregivers tend to be female, a spouse, and over 40 years of age (Foster et al. 2005). It is important to understand the patterns of PCA use, the characteristics of family support providers, and the impact of this role on these lifelong assistants (Boschen et al. 2005a, 2005b). Families often play a central role in providing home services, which is beneficial to the injured person but has significant health, career, social, and other personal consequences for the informal provider (Boschen and Gargaro 2009). One generic rehabilitation study documented family caregivers may experience poorer health, higher rates of anxiety and depression, and possibly develop more long-term health problems (Holicky 1996). The evidence base from the above studies of these family caregiver consequences is crucial for justifying healthcare and social support direct service allocation to SCI families, and highlights the need for promoting self-care for all PCA providers to improve stability of services.
Despite using a broad definition of attendant care or personal assistance there are very few high- quality academic articles on this topic. Although most of the literature reviews use the words “attendant care” or “attendant care services”, the term “attendant services” now appears to be the preferred term, especially among many SCI consumers. The articles reviewed in Table 3 below focus both on the characteristics of attendant care for the adult SCI population and on the promotion of their independent function and behaviours which will maintain or improve their health.
Specifically, articles were included if they addressed:
- the effectiveness of in-home attendant care services
- factors influencing the use of and access to attendant care, and/or
- future interventions to improve outcomes.
Qualitative data were included in this review due to the lack of intervention articles and the utility of the data obtained from studies that met the chapter inclusion criteria. Most of the research evidence comes from observational studies, with few randomized controlled trials (RCTs). All intervention studies involving facilitation of the individual to direct their own attendant care have been included in Table 4 in this chapter.