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 four observational studies that 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 cross-sectional qualitative study of informal care networks found 10 out of 14 individuals interviewed identified only family members or friends rather than formal health care providers as part of their social network. The majority reported a decrease in size of their social network following SCI. Self-assessed needs varied widely between individuals, with caregivers providing advice/validating concerns, acting as knowledge brokers, advocating on the behalf of affected individuals, helping with finances, and helping to prevent secondary health conditions (Guilcher et al. 2012)The last cross-sectional study evaluated the influence of life care planning on use of attendant services. They found a greater proportion of attendant care was paid (rather than unpaid) following life care planning. In total, the average number of daily unpaid hours for individuals with a life-care plan fell from 12.92 to 10.88 per day, while the average number of paid hours with a life-care plan increased from 5.81 to 7.89 (Owen and Marini 2012).
Two cross-sectional studies explored burden issues amongst the caregivers of individual with SCI (Arango-Lasprilla et al. 2010). A majority of caregivers indicated to be overwhelmed with their caregiving responsibilities. According to the findings by Gaijraj-Singh (2011), the poorer level of psychological well-being is associated with a higher caregiver burden. The increased family caregiver burden is associated with a number of hours of care provided per day and with increased age of caregivers (Gaijraj-Singh 2011). The results provided by Arango-Lasprilla et al. (2010) indicated there is a relationship between the increased family caregiver burden and the support needs in domains such as respite, information, emotional, economic, physical health, etc. Finally, a survey looking to describe the needs of individuals with long term SCI who live at home suggested a significant portion of unmet care-needs is related to the incidental activities of daily living and housekeeping support (Van Loo et al. 2010).
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 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 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 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.
There is level 5 evidence (Guilcher et al. 2012) indicating size of available networks decrease following SCI for most individuals, and informal care networks engage in a variety of roles, including advice/validating concerns, knowledge brokers, advocacy, preventing secondary health conditions (SHCs), assisting with finances, and managing SHCs.
There is level 5 evidence (Foster et al. 2005; Robinson-Whelan and Rintala 2003) indicating that most informal caregivers are female spouses of SCI consumers who required additional assistance in fulfilling and maintaining provided services.
There is level 5 evidence (Berry et al. 1995) suggesting general satisfaction with informal attendant services from both clients and attendants although there are variations with some aspects of care.
There is level 5 evidence (Weitzenkamp et al. 2002) that the most significant predictors of PCA use are motor function, days spent in rehabilitation, and length of stay in a nursing home.
There is level 5 evidence (Bushnik et al. 2007) indicating that personal attendant turnover is positively correlated with higher injury level and increased need for assistance in exercise and transfers.
There is level 5 evidence (Gaijraj-Singh 2011) that increased family caregiver burden is associated with poorer levels of psychological well-being. Level 5 evidence (Arango-Lasprilla et al. 2010) indicates that poorer psychological well-being is associated with greater information, emotional, economic, physical health, sleep and psychological support needs.
There is level 5 evidence (Arango-Lasprilla et al. 2010) that the majority of family caregivers are overwhelmed with their caregiving responsibilities.
There is level 5 evidence (Gaijraj-Singh 2011) that increased family caregiver burden is associated with the number of hours of care provided per day and with increasing age of the caregiver.
There is level 5 evidence (Arango-Lasprilla et al. 2010) that increased family caregiver burden is associated with greater respite, information, emotional, economic, physical health, sleep and psychological support needs.
There is level 5 evidence (van Loo et al. 2010) that substantial unmet care needs requiring support for incidental activities of daily living and housekeeping support.
There is level 5 evidence (Owen and Marini 2012) that the use of life care planning may decrease use of unpaid attendant care, and increase the use of paid attendant care.
There is qualitative evidence (Cockerill and Durham 1992) that both consumers and attendants agree that the emphasis of care in transitional centres should be placed on facilitating consumer independence which may be accomplished by delineating the role of attendants.
Most informal caregivers are female spouses of individuals with SCI who require assistance in fulfilling and maintaining services.
There is substantial burden to family caregivers who report feeling overwhelmed, decreased psychological well-being and decreased satisfaction with life.
There is general satisfaction with informal attendant services.
The most significant predictors of personal care assistance use are motor function, days spent in rehabilitation, and length of stay in a nursing home.
Personal attendant turnover is positively correlated with higher injury level and increased need for assistance in exercise and transfers.
Directing one’s care, establishing roles and boundaries for PCA, and improving training may facilitate consumer independence.