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.
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. Their purpose was to help 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 counseling for persons at risk of developing UTIs and found the risk can be reduced below threshold levels. It should be noted a majority of the participants required multiple sessions, suggesting skill-based interventions such as this must be repeated over sessions and time to achieve change. The authors stressed 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 multitude 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. A one-year follow-up and a collaborative home/facility visit after the workshop provided 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 (Schopp et al. 2007) and a case series (Frost et al. 1999). Schopp et al. (2007) evaluated a PAS training program with 87 consumers and 53 personal assistants in a longitudinal study designed to improve the relationship between consumer and caregiver in addition to increasing knowledge of health and wellness. Both groups attended a workshop that 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 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). Unsafe work environments, changing discharge locations, and limited verbal abilities of the attendants, hampered obtaining preliminary results. 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. Furthermore, 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.
There is level 1 evidence (Cohen and Schemm (2007)) indicating that client-centred visits by an occupational therapist can increase the number of life roles performed and improve life satisfaction.
There is level 4 evidence (Barber et al. 1999) that suggests recurrent UTIs can be reduced below threshold levels through a simple cost-effective educational intervention by a clinical nurse.
There is level 4 evidence (Beck and Scroggins 2001) that suggests that health can be maintained after participation in an educational intervention focused on skill development and support in the “real world.”
There is level 2 evidence (Schopp et al. 2007) that a skills training project can improve knowledge in both consumers and personal assistants up to six months post-training.
There is insufficient evidence (Frost et al. 1999) to determine the efficacy of training persons with disabilities to provide SCI attendant care.
There is Level 4 evidence (Mattson-Prince 1997) suggesting that an independent living self- managed model for attendant care results in decreased costs, better health outcomes and life satisfaction, and fewer re-hospitalizations than agency-based care.
Goal-directed occupational therapy can achieve gains in role performance and improvements in life satisfaction.
Counselling on proper technique and hygiene for at least one session might reduce the risk of UTI to below threshold for individuals at risk for UTIs.
Re-hospitalization might be reduced after participation in an educational intervention involving a workshop, a collaborative home visit, and access to follow-up.
Skills development educational workshops for attendants and consumers can increase knowledge about spinal cord injury, wellness, and communication.
- Directing, training, and financing one’s personal attendant care may lead to financial savings, better health outcomes, and increased life satisfaction.