Individuals go through a demanding functional rehabilitation process following a spinal cord injury (SCI). Having an SCI involves taking into account important issues (e.g., financial support, insurance, technological devices or equipment, etc.) when planning for discharge home. Appropriate housing and attendant care are cornerstones of successful reintegration. In cases where individuals are more vulnerable, the quality of these resources, in particular in term of functionality and availability, can make the difference between independent living or not.
For the past three decades these issues have been of interest to and addressed to some extent by both the academic and disability communities. The work done by the disability community has been oriented towards the perspective of increasing access to more specific resources such as support and equipment, as well as to mainstream resources such as transportation, housing, health, and educational services. These advocacy actions have been undertaken to increase choice and control over issues related to the living arrangements of persons with disabilities, in particular those with SCI. Within the academic community many of the studies related to independent living have focused largely on impact research relating to several dimensions of the life of persons with disabilities, as well as on the community as a whole. We present in this chapter the findings involving persons with SCI.
Housing is a fundamental need of all people. Finding appropriate living arrangements within the community can be difficult for many individuals with SCI after they are discharged from rehabilitation. Yet housing is key to a successful transition from rehabilitation to community reintegration. Because of the cost associated with altering the physical environment to accommodate an individual with an SCI, housing presents a financial challenge and therefore housing can be a significant obstacle limiting one’s opportunities to resume an active role and fully integrate within the community. This issue is also connected to two other important factors: 1) community resources related to availability and capacity to provide support, and 2) opportunity to choose one’s living environment. Both factors have been documented as playing an important role in the quality of community reintegration and residential satisfaction.
Attendant care services are a resource designed to provide a person with SCI with support so they can engage in activities of daily living that are considered important. This support is usually put into place after discharge from rehabilitation when the individual returns to his/her community. Several important decisions are required when considering attendant care services, such as who will provide the support, how it will work, who will pay for it, etc. At the same time, the relationship between rehabilitation services and community resources must be also considered in the context of the built environment to ensure the best opportunities for independent living among individuals with SCI. For example, the quality of the built environment, particularly housing adaptations, is very important because it can influence how the attendant care services will be provided in terms of the intensity and frequency of care.
In this chapter we provide a review of literature related to housing and attendant care services, and the influence of these factors on the quality of life of individuals with SCI living in the community. In order to develop a more comprehensive analysis of this material, the literature selection and review methods used have been expanded beyond those traditionally used for the other SCIRE reviews (see SCIRE Methods). Specifically, two new databases with a focus on the social sciences were searched (Social Sciences Abstracts and Social Work Abstracts), and the inclusion criteria were broadened to include any study (including qualitative studies) that was at least partially community-based which examined factors influencing satisfaction with housing and attendant care needs after SCI, issues with access, and/or interventions improving outcomes.
Housing is a primary need for all individuals. The necessity of having a safe home compatible with one’s personal needs increases when an individual is vulnerable. One of the first questions asked when a person has sustained and survived an SCI is where he/she will be able to live. Successful community reintegration is intimately linked to housing within the background of the person’s needs, the attributes of relevant environmental factors, and the preferred choice of living environment of the person with the injury. Until recently, SCI authors generally only discussed the issue of the suitability of a home regarding its physical accessibility and adaptations (Heywood, 2004; Forrest and Gombas 1995; McAweeney et al. 1996). Forrest and Gombas (1995) revealed that a lack of accessible housing increases a person’s length of stay on the rehabilitation unit, thus increasing the overall cost of healthcare services after SCI.
The choice of living environment for people with SCI is critical because of their increased need for human and environmental support, requiring them to carefully consider who they will live their life with and where. In some cases, individuals with SCI do not have a choice because of the lack of accessible housing inventory. Having a range of choices of housing likely hastens and enhances the transition from rehabilitation to community while improving the personal match to the living environment. Ten non-intervention housing articles are presented below. Given that stable housing is a basic human need, it is virtually impossible to develop intervention studies in this research area of inquiry.
From the onset of SCI, the rehabilitation services and the resources required for independent living remain two of the key elements for successful community reintegration. This is particularly true for people with spinal cord injury who use more services (particularly related to housing) than other consumers with disabilities such as TBI or Stroke (Fuhrer et al 1990). According to Tate and Forchheimer (1998) participation in an independent living program (e.g., peer counseling, group support, etc.) can provide better knowledge of the resources needed and may lead to better personal control and adjustment upon return to the community. However, a follow-up study of an independent living program revealed it had little or no impact on life satisfaction or personal control of participants with SCI (Forchheimer and Tate 2004). Marital status and transportation barriers are the most important predictors related to living arrangement post-SCI (DeJong et al 1984). Boschen (1996) found that the best predictor of residential satisfaction was having the perception of choice of residence, and that satisfaction with residential placement was correlated with life satisfaction.
Boschen (1988, 1990) found that the level of satisfaction with the home is also related to difficulties encountered living in the home, primarily because of environmental barriers. Moreover, the level of satisfaction was higher among persons with SCI living in their own apartment. In previous work, Boschen (1988) revealed that having one’s own apartment was preferred by the individuals with SCI and that their choice is determined by the quality of the environment, particularly in terms of accessibility. The choice of residence is limited by many factors and the limitations are magnified as the severity of disability increases. Therefore individuals with tetraplegia are at a significant disadvantage. The findings indicate that those with tetraplegia move several times after discharge from rehabilitation. The moves are influenced by factors such as information, money, accessibility, insurance, personal assistance, etc. Individuals with SCI who eventually end up living with their parents or in an institution consider such living arrangement as their last option (Bergmark et al 2008). Anzai et al (2006) found that certain social and personal factors (e.g., age, having insurance or private funding) reduce the risk of moving to a nursing home after discharge from rehabilitation. Living in an environment considered to be minimally restrictive which enables active participation in daily decisions according to the principles of independent living is more likely to contribute to improved quality of life (DeJong and Hughes 1982). Finally, safety at home is important to persons with SCI, particularly related to fire. Many participants indicated they would need assistance with that dimension of home safety (Cesar et al. 2002).
The evidence reveals the importance of the continuity of services between rehabilitation and return to the community (Fuhrer et al 1990). The lack of accessible housing is an important barrier that may have an impact on the community reintegration process as well as on rehabilitation service costs. Community services play an important role, especially in housing and peer support to return to independent living (Fuhrer et al. 1990; Tate and Forchheimer 1998). Finally, the quality of the built environment is one of the key determinants of the ability to find housing that meets the needs of persons with SCI, which also affects their level of satisfaction with respect to where they reside. Freedom of choice related to selecting where they will live constitutes a salient feature of life satisfaction for many. However those individuals who encounter obstacles (related to accessibility, financial support and so on) will likely have little choice when it comes to selection of housing (Boschen 1988; 1990). Despite opportunities to participate in transitional or independent living programs before discharge from rehabilitation, the common finding of this body of work is that the move back into the community following SCI seems to be a real test of both the supportiveness of the environment and the resilience and resourcefulness of the individual in determining the success of the reintegration.
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 that 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 what was called independent living 20 - 30 years ago and is now commonly referred to as community integration and social participation, and which may also include accommodated employment and/or adapted sports and recreation (Adams and Beatty 1998). In addition, home-based attendant care, which is typically provided only part-time and not on a full-day basis, 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 that a person be able to carry out their routine tasks alone without help from someone else. While tasks are completed with some assistance, 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 own 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 aids, home health aids, 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 an SCI (Berry et al. 1995). The United States Federal Bureau of Statistics predicted that the number of personal care attendants would be 827,000 in 2005 (Frost et al. 1999). Attendant care services can be expensive and are therefore an important financial as well as social consideration. In 1992, the average individual yearly cost of attendant care services for all levels of SCI combined was $14,359 USD two years after injury (Johnson et al. 1996). However, costs ranged dramatically and these data are now clearly outdated. But for comparison purposes it is instructive to know that 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 that 44% of total costs related to SCI were for attendant care (Harvey et al. 1992).
Regardless of cost, PCA is essential for many SCI consumers and is correlated with a variety of factors. Previous studies have found that 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 that 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 that 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 in the literature on this topic. The articles reviewed in Table 2 below focus both on the characteristics of attendant care for the adult SCI population and on the promotion of their independent function and behaviours that 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 paucity of intervention articles and the utility of the data obtained from these studies which 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 3 in this chapter.
This attendant care literature review for non-intervention attendant care articles includes five peer-reviewed observational articles all classified at Level 5 and one qualitative article. A summary of the findings can be found in Table 2.
Table 2: Non-Intervention Articles
Two observational studies identified correlates of PCA turnover and service use. In one study, a large sample of participants with SCI reported the number of new assistants within the past six months, how often they worked, and how satisfied they were with received service (Bushnik et al. 2007). Individuals with high turnover (HT) rates were compared to those with low turnover (LT) rates. The majority of the sample (over 80%) was very or extremely happy with received services, with greater happiness associated with unpaid rather than paid work. There was no difference in turnover rates in relation to injury level. However those with HT had more needs regarding exercise and transfers than those with LT. Individuals with LT had significantly more unpaid attendant care by family members or friends, with higher reported skill level and satisfaction ratings than those with HT. Those with HT were more likely to rate attendant care as restricting their life. No differences were found for QOL, functioning, or rates of secondary complications.
The second observational study identified predictors of PCA use in a large sample of SCI participants by retroactively examining health records from a national SCI database (Weitzenkamp et al. 2002). The motor portion of the Functional Independence Measure (FIM) was the strongest predictor of PCA use, followed by days spent in a nursing home. Length of rehabilitation stay only predicted PCA use for individuals who paid for services. Surprisingly, age, gender, years since injury, and service payer were non-significant variables in predicting attendant care use.
There were two observational studies which described the characteristics of informal caregivers. The first investigated caregivers of a large sample of veterans to obtain a better understanding of future care needs of those aging with an SCI, determine the number of veterans receiving care from family, describe those caregivers, and assess perception of stability of that care (Robinson-Whelan and Rintala 2003). A total of 22% of participants reported receiving only unpaid assistance and received on average 12.9 hours of daily care. Sixteen percent received both unpaid and paid care with an average of 10.4 and 4.8 daily hours respectively. Those with high tetraplegia were more likely to use both paid and paid PCA. Of those who used unpaid care (n = 130), over half (59%) primarily received care from a spouse or partner, followed by parent, sibling/spouse of sibling, and child/spouse of child, most of whom were women. One quarter of participants were not sure their primary caregiver could continue to provide the same care five years in the future, and more than half did not have a suitable alternate person.
A related study of informal caregivers found similar results (Foster et al 2005). PCA were mostly female spouses of the SCI consumer. The most common services provided by unpaid caregivers were practical, emotional, and physical care. Over half of the participants spent more than three hours per day providing care or support. In terms of required services, family caregivers required assistance in six areas: respite/care support (concerns about health problems of caregiver); personal support (managing stress); information services (medical updates and information regarding equipment/aids); health professional services (PT or massage); home help and practical support (housework, yard maintenance); and lifestyle services (employment support for consumer).
A survey compared consumers and attendants with few financial resources on their perceptions of care, satisfaction, independence, and control (Berry et al 1995). Injury level ranged from C7-C3 and most consumers had one regular attendant who worked on a daily basis. Most attendants were family members or friends, as the majority of the sample only had Medicaid to pay for healthcare expenses with no secondary insurance. Most attendants received training during the consumer’s inpatient rehabilitation and were trained by the consumer, nurses, and occupational therapists. The majority of consumers felt assistance was always available in a timely fashion and that meals were on time. All participants felt they were in control of their financial affairs. Most (68%) felt very satisfied with quantity, quality, dependability and overall impression of care. In contrast, attendants often rated their clients as less independent in functioning and self-care than the consumers. They also thought timeliness of care and meals was more of a problem than the individuals with SCI, and they rated their clients’ satisfaction as lower than what clients rated. However, all agreed that control and substance abuse were not problems.
A qualitative study obtained information from attendants and consumers regarding the role of personal assistive services in independent living (Cockerill and Durham 1992). Consumers described the difficulty of obtaining reliable and affordable attendant care services. Attendants struggled with determining whether their agency or the consumer should set priorities and direct care. Burnout was quite common and attributed to little performance appraisal, low pay, and few opportunities for advancement. In terms of transitional centres, both consumers and attendants agreed that the emphasis of care should be promoting consumer independence. However, there was little reported on training for how this was to be accomplished. As a result, attendants created their own methods for educating the client. Obstacles in transitional centers included a lack of tailored skill development for consumers, establishing boundaries for consumer independence, and teaching consumers to direct their attendant care.
Maintaining good health practices can lead to a greater level of independence. Moreover maximizing health is an important goal for both the person with the SCI and family caregivers, and is important for the healthcare system since complications and hospitalizations are costly. Most importantly, healthy individuals are more likely to be maintained in community settings and more likely to be productive.
Attendants are often required to perform tasks such as transfers and bowel and bladder care, all of which involve knowledge, skill, and effective communication (Berry et al 1995; DeVivo et al 1989). If not done properly, secondary complications such as pressure sores and urinary tract infections (UTIs) may occur. These issues underscore the need for proper training and assessment of that training.
Personal care assistance services can be obtained through agencies or can be hired, trained, and paid independently by the consumer. The effects of these two approaches in terms of health outcomes and satisfaction is largely unknown. The impact of the type of payer on psychological functioning of SCI consumers has been investigated, and the amount of assistance and payer type may influence self-esteem (Tate et al 1994a). Those with more psychological distress are more dependent on attendant care and tend to pay for it rather than rely on informal support (Tate et al 1994b).
A total of 6 intervention articles were reviewed which included one Level 1 RCT, a Level 2 prospective study, two Level 4 pre-post studies, one Level 4 case series, and a Level 4 observational study. A summary of the methods and outcomes can be found in Table 3.
Table 3. Interventions that Promote Use of Attendant Care
Health promotion is an important area for maintenance of individuals in the community. Only three intervention studies were identified in this area and only one is of a high quality; the other two are observational studies. Cohen and Schemm (2007) conducted an RCT with a convenience sample of persons with SCI in the early phases of rehabilitation. The occupational therapist visits were intended to be client goal-focused, structured, and individualized. They were to help the participants increase their functional independence and the depth and breadth of their social roles. No statistically important differences were noted in the participants’ independence level or handicap level based on this intervention.
Barber and colleagues (1999) studied the effectiveness of skills-focused counselling for persons at risk of developing UTIs and found that the risk can be reduced below threshold levels. It should be noted that a majority of the participants required multiple sessions, suggesting that skill-based interventions such as this must be repeated over sessions and time to achieve change. The authors stressed that this is a simple and cost-effective intervention when compared to the medical interventions required with chronic UTIs.
The Beck and Scroggins (2001) post-test study has several interesting aspects. A health maintenance education program was developed to deal with a preponderance of re-hospitalizations due to spinal cord dysfunction with tetraplegia. The program was comprised of: a one-day workshop consisting of evidence-based education; a collaborative home visit; and ongoing support provided via telephone. Healthcare providers and family members were included, in recognition that the larger healthcare system needs to be educated regarding SCI consequences and available resources; the one-year opportunity for follow-up; and the collaborative home/facility visit after the workshop in order to provide individualized “real-world” follow-up to the concepts discussion in the workshop (strategies, educational resources, and supervised practice).
Attendant care training was discussed in a prospective controlled trial and a case series. Schopp et al (2007) evaluated a PAS training program with 87 consumers and 53 personal assistants in a longitudinal study that was designed to improve the relationship between consumer and caregiver in addition to increasing knowledge of health and wellness. Both groups attended a workshop which provided information about health threats, severity of various secondary conditions, and specific health behaviours to prevent complications such as pressure sores and UTIs from arising. A physician led this study and provided training for bowel and bladder management, nutrition, and weight-loss strategies. A second component to this intervention was interactive sessions involving role-playing, discussions on effective listening and communication skills, and assertiveness training. Training was completed as one large group and then separate groups consisting of caregivers and consumers. The results revealed no change in the working relationship between the two groups. However, knowledge among participants significantly increased.
A case series investigated the utility of training persons with disabilities to provide PCA for SCI consumers in an inner city via the Linking Employment, Abilities and Potential (LEAP) PVA Training Program (Frost et al 1999). Obtaining preliminary results was hampered by unsafe work environments, changing discharge locations, and limited verbal abilities of the attendants. However, one female client with a C5 injury used LEAP services and was doing well with both the agency and family help. More data must be collected to determine client satisfaction and success of the intervention.
Despite the common use of attendant care services, there have been few studies which investigate the utility of various types of personal care. One observational study compared agency-provided PCA with self-managed attendant care. Seventy-one participants with high-level tetraplegia were interviewed about their experiences with either approach using measures of health status, life satisfaction, functional ability, service satisfaction, locus of control, and cost (Mattson-Prince 1997). Results indicated significant savings using non-agency attendants ($156 per day if using 24-hour care) and are higher when non-agency nurses are used. Further, those not using agencies had better health outcomes, fewer re-hospitalizations, and greater life satisfaction and locus of control than those using agency-based attendant care services. It should be noted that paid attendant services were often complemented by attendant care provided by family members.