Foster et al. 2005; Australia
Downs & Black = 12
Observational
N= 179

Population: 179 individuals who provide care to a family member with SCI. SCI population was 140 male; 39 with complete tetraplegia; 60 with incomplete tetraplegia ; 43 with complete paraplegia ; 33 with incomplete paraplegia .
Treatment: No treatment. Purpose was to examine family caregiving in relation to individuals with SCI.
Outcome: Spinal Cord Injury Questionnaire (SCIQ) designed to collect information about the family caregiver, and the Family Caregiver Questionnaire (FCQ) completed by the family caregiver and covers description of caregiving and services required.

1. Family caregivers were predominately female (84.4%), a partner or spouse (62.0%), most were 40 years of age and older (72.5%), with 87% residing in the same house as the individual with SCI.
2. Practical care (running errands, getting groceries) was the most reported type of care (92.7%).
3. Emotional care (discussion of problems) was reported in 87.6% of surveys, and physical care (assisting with transfers, dressing) was reported in 67.0%.
4. 55.3% of family caregivers spent 3hrs or more per day providing care.

Bushnik et al. 2007; USA
Downs & Black = 11
Observational
N=203

Population: Average age =47.0±10.7 years. 19±41 years post injury.
58 with complete tetraplegia; 58 with incomplete tetraplegia; 44 with complete paraplegia; 7 with incomplete paraplegia. Treatment: No treatment. Purpose was to examine factors that may influence personal care attendant (PCA) turnover and the impact of high PCA turnover (≥2 attendants in the past 6 months) on individuals with SCI.
Outcome: Personal Attendant Care Questionnaire, a measure of the amount of personal assistance utilized as well as the satisfaction with the care.

1. The high turnover (HT) group had significantly few PCAs reported as relative or friend compared to the low turnover group (LT).
2. Both groups were equally satisfied with the skill level of PCA
3. The HT group was significantly less satisfied with the quality of care.
4. On the quality of life assessment, the HT group felt that their PCA restricts daily life significantly more than LT group.

Weitzenkamp et al. 2002;
USA
Downs & Black = 10
Observational
N= 2154

Population: Mean age at injury =33.3 years. Mean age= 36.9 ±(11.4) years. 1723 male; C1-4 AIS A n=201; C5-8 AIS A n=281; T1-L1 AIS A or B n=993 L2-S5 AIS A or all levels AIS D or E n=679.
Treatment: No treatment. Purpose was to assess the predictors of personal care assistance (PCA) use in people with SCI.
Outcome: Daily hours of paid, unpaid and occasional PCA services (items taken from the CHART); activities of daily living measured by the FIM.

1. 58.2% of PCA was unpaid.
2. Having more neurological impairment was significantly associated with requiring more care.
3. Each additional point of the interval measure of the motor FIM was associated with needing 7.3 fewer paid minutes and 5.8 fewer unpaid minutes.
4. Those who were further post injury required nonsignificantly less PCA.

Robinson-Whelen and Rintala 2003; USA
Downs & Black = 9
Observational
N=348

Population: Veterans; mean age = 54.8 Paraplegia = 177; low tetraplegia = 122; high tetraplegia = 49.
Treatment: No treatment. Purpose was to gain information on the informal care (unpaid assistance by caregiver) received by veterans.
Outcome measures: hours of informal assistance, likely that care provided will remain the same in 5 years, and assistance provided if current caregiver is unable to continue caring.

1. 37% (n=130) reported receiving some form of informal unpaid care.
2. Mean hours of informal care per day was 11.6 hours.
3. Of the 130 people receiving informal care, 59% identified a spouse or partner as their primary caregiver, 17% a parent, 9% a sibling, 8% a child, 2% a friend, 3% other.
4. 88% of the caregivers were women.
5. 25% reported that their caregiver would be able to provide the same amount of care in 5 years.
6. 54% do not have anyone else willing and able to assist them if their caregiver became unable to care for them.

Berry et al. 1995
USA
Downs & Black = 7
Observational
SCI n = 22

Population: SCI group age range = 20 to 36; 17 male, Level of injury = C3 to C7.
Treatment: No treatment. The purpose was to gain information on the attendant care arrangements among poor persons with SCI.
Outcome measures: number of attendants, number of hours per day with an attendant, tenure of the attendant, training of the primary attendant

1. 13 had one regular attendant, 7 had two attendants, and 2 had four attendants.
2. Hours per day with an attendant ranged from 1 to 24. Of the attendants, 5 were spouses, 2 were cohabitors, 13 were other relatives, and 2 were friends.
3. Tenure in years of the attendants ranged from less than one year to 22 years.
4. 15 primary attendants were trained during inpatient rehabilitation, 9 were trained by the subjects, 6 by nurses or occupational therapists, 8 by others. One attendant was paid by Medicare, all other primary attendants were unpaid.
5. 15 were very satisfied with the quantity, quality, dependability of care they received; 3 were somewhat dissatisfied.
6. Attendants rated their clients as less independent in functioning and self-care than the consumers
7. Both consumers and attendants agreed that control and substance abuse were not problems

Cockerill & Durham 1992;
Canada
Qualitative
N=66

Population: Current residents (n=37) 22 were male, mean age= 29 years. 20 were disabled as a result of an SCI or cerebral palsy. Prior residents (n=24) 14 were male, average age = 34 years. 15 were disabled as a result of an SCI or CP. Attendants (n=29) had an average tenure of 18 months, average age of 32.6 years and were 17 female. Coordinators had been in their position for an average of 3.2 years, serving an average of 26 clients.
Treatment: No treatment. The purpose was to examine role of attendants in independent and transitional living centers and obstacles experienced in transitional living centers.
Outcome: Self-administrated questionnaire with open and closed-ended questions.

1. Attendants identified a lack of clear guidance from either agency of individual or the individual as to who should set priorities and working conditions.
2. Attendants identified experiencing high levels of burnout and stress. Factors such as inability to measure success, low pay, few opportunities for promotion were listed as contributors.
3. Attendants identified a lack of communication in transitional living centers regarding methods of teaching independence with personal care to individuals with disabilities.