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Non-Intervention Attendant Care Studies

This attendant care literature review for non-intervention attendant care articles includes five peer- reviewed observational and four cross-sectional articles all classified at Level 5, and one qualitative article. A summary of the findings can be found in Table 4.

 

Table 4: Non-Intervention Articles


Author Year; Country
Score
Research Design
Total Sample Size
MethodsOutcome
Guilcher et al. 2012

Canada

Cross-sectional/Qualitative

Level 5

N=14

Population: 14 participants with SCI (6M 8F); median age of 47.5 years, median time post-injury was 18 years. 8 used electric wheelchairs, 6 manual.

Treatment: No treatment. Purpose was to describe the structure of informal networks and to understand their influence on the prevention and management of secondary health conditions (SHCs).

Outcome Measures: The Arizona Social Support Interview Survey (6 domains including social support, physical assistance, positive feedback, advice, material assistance and intimate relations) and open-ended questions.

1.  10 individuals identified only family and/or friends rather than formal health care providers within their social networks.

2.  The largest networks were for social support (median 6.5 persons) and physical assistance (median 4), with smallest networks for material assistance and intimate relations (median 2.5).

3.  Available network sizes were larger than utilized networks. Majority of respondents reported decreased social network following SCI.

4.  There was variation in the perception of needs, with median scores ranging from 1.0 (no need for material assistance) to 5.0 (great need for social support and physical assistance).

5.  Informal networks engaged in a variety of roles, including: advice/validating concerns, knowledge brokers, advocacy, preventing SHCs, assisting with finances, and managing SHCs.

Rutherford Owen and Marini 2012

USA

Cross-sectional/Qualitative

Level 5

N=55

Population: 55 participants with SCI (33M 22F); predominantly Caucasian (85%); residing in 18 different states.

Treatment: Investigated the type and amount of attendant care between individuals before and after completion of life care planning.

Outcome Measures: 39 question life care survey consisting of fixed and open-ended questions.

1.  Pre-life care plan, 67.65% unpaid attendant care (family and friends), 17.65% paid (agency), 14.71% paid (private hire)

2.  Post-life care plan, 33.38% unpaid (family and friends), 46.88% paid (private hire), 18.75% paid (agency)

3.  After completion of life care planning, number of daily unpaid attendant hours decreased from 12.92 (pre) to 10.88 (post); paid hours increase from 5.81 (pre) to 7.89 (post)

4.  Participants without funding were more reliant on unpaid attendant care.

Gajraj-Singh 2011

Fiji

Cross-sectional

Level 5

N=30

Population: 30 family (primary) caregivers (10M 20F); mean age 39.2yrs (range 21-70yrs); 13 spouses; 5 mothers; 5 siblings; 4 children, 3 others; mean 6.1 hrs (SD=2.19) per day of caregiving.

Treatment: No treatment. Purpose of the study was to explore the psychological response and to assess the burden of caregiving for SCI persons living in the community in Fiji.

Outcome measures: The Index of Psychological Well-Being (IPWB), Caregiver Burden Inventory (CBI), Barthel Index (BI).

1.  Psychological well-being of caregivers (IPWB mean score 4.5/ 7) was not affected by caregiver age, number of hours spent caregiving, number of years of caregiving, level of lesion or severity of disability. Poorer psychological well- being was significantly associated (r=0.52) with higher caregiver burden (CBI).

2.  The breakdown of caregiver burden (CBI mean score 47.6/100) found participants scored highest in time- dependent burden (mean 13.6) followed by development burden (mean=11.9).

3.  A significant association (r=0.46) was found between total CBI and age, indicating older caregivers experienced greater burden.

4.  Total CBI was significantly associated with the number of hours caregiving per day (r=0.35), suggesting burden increased with the increasing amount of time spent providing care.

Arango-Lasprilla et al. 2010

Colombia

Cross-sectional

Level 5

N=37

Population: 37 family caregivers (5M 32F); mean age 44.9 years (SD 16.4); 11 spouses, 18 parents; mothers, 6 siblings, 2 others; mean educational level of 8.4 years (SD 4.2).

Treatment: No Treatment. The purpose of this survey was to determine the most frequent needs of family caregivers of individuals with SCI; to describe caregivers’ psychosocial functioning; and to examine the relationship between caregiver needs and psychosocial functioning.

Outcome measures: Caregiver Needs

Questionnaire (9 support sub-scales indicating family needs; emotional, psychological, information, economic, sleep, rest, household, community, own physical health), Zarit Burden Interview, Patient Health Questionnaire, Satisfaction with Life Scale, Interpersonal Support Evaluation List.

1.   68% report being overwhelmed with caregiving responsibilities, 43% some level of depression and dissatisfaction with life.

2.   Greater economic, emotional, informational, sleep, psychological, and physical needs were significantly and positively correlated with depression (r ranged 0.35-0.56) and burden (r ranged 0.42 -0.56)

3.   Greater economic, household, physical, sleep and psychological needs were significantly and negatively correlated with satisfaction with life (r ranged −0.35 to −0.41) and social support (r ranged from −0.39 to −0.59).

4.   Greater community support and respite needs were negatively correlated with social support (r ranged −0.41 to −0.52), and more emotional needs were negatively correlated with satisfaction with life (r=−0.45).

5.   Higher needs for respite were significantly and positively correlated with burden (r=0.51), and more household needs were significantly and positively correlated with depression (r=0.52).

Van Loo et al. 2010

The Netherlands

Cross-sectional

Level 5

N=453

Population: 453 / 999 possible respondents from the Dutch SCI Patient Organization; 295M 158F; mean age 47.7 yrs (range 18-82); mean YPI 13.3 (range 0.6-62 yrs); 19.9% complete and 14.4% incomplete tetraplegia, 46.3% complete and 19.4% incomplete paraplegia.

Treatment: No treatment. Purpose to describe the care needs according to persons with long-term SCI who were living at home.

Outcome Measures: Postal questionnaire with numerous variables including socio- demographic and injury characteristics, frequency of SCI-related contacts with caregivers, and other professionals.

1.  72% indicated a need for additional care with needs ranging from outpatient visits to rehabilitation centres or home consultation (phone or home visiting). 19.0% needed support for incidental activities of daily living, 18.5% for incidental housekeeping and 8.6% for other interventions.

2.  In 14.6% of all participants, another caregiver was preferred, mainly peers, home help or care manager/coach.

Bushnik et al. 2007

USA

Observational

Level 5

N=203

Population: 203 individuals with SCI; Mean age =47.0 (SD 10.7 yrs); 19 (SD 4.1) years post injury (YPI); 58 with complete tetraplegia; 58 with incomplete tetraplegia; 44 with complete paraplegia; 7 with incomplete paraplegia.

Treatment: No treatment. Purpose was to examine factors which 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 Measures: 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 fewer 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 their PCA restricts daily life significantly more than LT group.

Foster et al. 2005

Australia

Observational

Level 5

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 Measures: 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.

Robinson-Whelan & Rintala 2003

USA

Observational

Level 5

N=348

Population: 348 veterans with SCI; 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, likelihood 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.

Weitzenkamp et al. 2002

USA

Observational

Level 5

N=2154

Population:

2154 people with SCI (1723M 431F); mean age at injury 33.3 yrs; mean age at time of study 36.9 (SD 11.4) yrs; 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 Measures:

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 less PCA.

Berry et al. 1995

USA

Observational

Level 5

N=22

Population: 22 participants with SCI (17M 5F); age range 20-36; Level of injury = C3 to C7.

Treatment: No treatment. 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 participants, 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 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; mean age 32.6 yrs. Coordinators had been in their position for an average of 3.2 years, serving an average of 26 clients.

Treatment: No treatment. Purpose was to examine role of attendants in independent and transitional living centers and obstacles experienced in transitional living centers.

Outcome Measures: 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.

Discussion

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.

Conclusion

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.