Intervention Studies for Primary Care Attendant
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
|Author Year; Country
Total Sample Size
|Cohen & Schemm 2007
|Population: 21 participants (19M 2F); age range 17-59 yrs; 16 with complete injury, 5 with incomplete injury.
Treatment: Participants received either 8 in-home visits with an occupational therapist or 8 social visitors over a 6-month period. 7 occupational therapists were recruited and given 6 hours of additional training in SCI, home-care and client-centered therapy. 3 people with no rehabilitation experience were recruited to be social visitors; they received training in in-home safety, rapport building and active listening.
Outcome Measures: Functional Independence Measure (FIM), Craig Handicap Reporting and Assessment Technique (CHART), the Role Checklist.
|1. No significant difference between groups in FIM or CHART scores.
2. OT group showed significant gain in average LSIA score, SV group did not.
3. Participants in OT group took on more new roles following intervention compared to social visitor group.
|Schopp et al. 2007
Prospective controlled trial
Consumer group (n=87, 72% with SCI);
34 in the intervention; 53 in the control group. Mean age = 40.1; 52 male.
Personal assistant group (n=53), 31 in the intervention, and 22 in the control group. Mean age = 45.2; 6 male.
Treatment: 6- hour personal assistance services (PAS) training program which: 1) provided information on the health threat; 2) severity of commonly occurring secondary conditions and health behaviours to prevent these conditions; and 3) promoted consumer/assistant professional relationship.
Outcome Measures: Knowledge of secondary conditions; nature of the consumer/assistant relationship.
|1. Consumers and personal assistants in the PAS program had significantly higher knowledge about secondary conditions at both 3 and 6 months after the intervention than those in the control group.
2. There were no significant differences in either the consumer or personal assistant ratings of their working relationship.
3. Consumers who changed personal assistance during the data collection reported being less comfortable advising what needs to be done, less choice over what duties were done; and less satisfied with the way their needs were being met.
|Beck & Scroggins 2001
|Population: 19 participants: 3 with tetraplegia and 16 long-term health care provider.
Treatment: Health Maintenance Education Program made up of 3 phases: 1. 1-day interdisciplinary workshop to provide research-based knowledge on care; 2. Collaborative home visit to provide individualized assessment, education and intervention; 3. 12-months of on-going support to the consumer and care provider relationship.
Outcome measures: Program evaluation forms.
|1. 7 evaluations returned indicating 100% satisfaction with program.
2. Statistically significant increase in knowledge of: prevention of respiratory complications; prevention & treatment of autonomic dysreflexia prevention of spasticity; reportable symptoms; effects of aging; availability of community resources.
3. Benefits included: demonstration of skills, on-site evaluation, awareness of resources.
4. Suggested modifications: educational content regarding client vulnerability, client advocacy, discussion of role of agencies.
|Barber et al. 1999
|Population: 17 participants, all presenting with 2+ UTIs in a 6-month period, seen at an outpatient SCI clinic.
Treatment: Intensive counselling by clinic nurse to learn proper clean intermittent catheterization (CIC) technique, daily external catheter application and care, appropriate cleansing of supplies and daily perineal hygiene. If participants continued to exceed 2+ UTIs in the following 6 months they were started on either nitrofurantoin or methenamine mandelate with ascorbic acid or given more instruction on proper techniques.
Outcome Measures: Compliance with regime, number of UTIs.
|1. 11 participants responded to counselling sessions; 8/11 refused suppressive therapy and received multiple sessions.
2. 4 participants started on methenamine mandelate and ascorbic acid to treat UTI; 2/4 developed 1 UTI.
3. 3 participants placed on nitrofurantoin; none developed UTIs.
4. Compliance found to be a problem in patients in both regimes after 1 year of treatment.
|Frost et al. 1999
|Population: 8 individuals with tetraplegia (5M 3F); C4-C8; age range 21-66 years.
Treatment: Project (Linking Employment, Abilities, and Potential (LEAP) provided training to individuals with mental health/ ABI, mental retardation, seizures, drug alcohol rehabilitation to work as PCA for individuals with tetraplegia living in the inner city.
Outcome Measures: Number of individuals with SCI receiving care from a trained LEAP individual at follow-up.
|1. Had little to no success in pilot project. 8 individuals with tetraplegia were identified as potential candidates over a period of 2 years.
2. Upon follow-up, only one candidate was continuing to receive care from a LEAP project graduate.
|Population: Agency-based care group (n=29) (27M 2F): mean age = 35.3; mean years since injury = 7.9.
Self-managed care group (n=42) (40M 2F): Mean age = 37.1; mean years since injury = 11.48.
Treatment: Independent living model or agency- based care. Purpose was to compare agency-based care and self-managed care.
Outcome measures: Patient function and well-being (RAND-36); current satisfaction against life satisfaction prior to SCI (LSI-A); physical independence, mobility, occupation, social integration and economic self-sufficiency (CHART); level of satisfaction with care being received (PASI).
|1. There was a significant difference between the groups with respect to income and employment (self- managed care group earned and worked more). People in the agency- based care group had lower spinal cord lesions (<C2)
2. The self-managed care group received significantly more hours of paid care.
3. Satisfaction with care being received was significantly higher in the self-managed care group.
4. No difference between the groups in current life satisfaction relative to life satisfaction before injury.
5. The self-managed care group reported a significantly higher level of health.
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 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 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 4 evidence (Mattson-Prince 1997) suggesting that an independent living selfmanaged model for attendant care results in decreased costs, better health outcomes and life satisfaction, and fewer re-hospitalizations than agency-based care.
There is insufficient evidence (Frost et al. 1999) to determine the efficacy of training persons with disabilities to provide SCI attendant care.