24 MIEMBRO DEL CONSEJO DE
I.5. ACUERDOS SOBRE LA OFERTA Y LA SOCIEDAD AFECTADA
As outlined in Section 3.3.3, participants reported the utilisation of formal and informal hours of PERSONAL CARE, HOME SUPPORT and PARTICIPATION SUPPORT during the previous four-week period. FORMAL CARE was calculated as the total PERSONAL CARE, HOME SUPPORT and PARTICIPATION SUPPORT where the service provider was paid. INFORMAL CARE was calculated as the total of these variables where the service provider was not paid.
Participants also reported if any needs remained unmet or if they had any comments about the availability of services in these areas. The individual services collected within each category are shown in Table 5-1. The remainder of this section presents an analysis of service utilisation patterns for FORMAL CARE and INFORMAL CARE.
Table 5-1 Personal Care, Home Support and Participation Support categories
Personal Care Home Support Participation support
Eating Telephone Leisure and recreation
Grooming Shopping Advocacy and information
Bathing Food preparation Ethnic health
Dressing Housekeeping Legal advice
Toileting Laundry Financial advice
Transfer bed/chair/wheelchair Transportation Vocation / education support Transfer bath/shower Medication Other participation support
Transfer toilet Finances
Communication Other home support
Equipment maintenance
Other personal care
Note: Each group included an ‘other’ category to record services not identified
elsewhere.
First, the average weekly hours over the previous four weeks of FORMAL CARE and INFORMAL CARE were examined (Table 5-2). Mean weekly FORMAL CARE and INFORMAL CARE was 27.4 (SD = 42.1) hours for the TBI group and 33.9 (SD = 27.8) hours for the SCI group. This equates to an average of 3.9 hours of care per day for the TBI group and 4.8 hours of care per day for the SCI group. The proportion of FORMAL CARE to INFORMAL CARE was 45%/55% for the TBI group and 41%/59% for the SCI group.
The minimum number of weekly care hours of both FORMAL CARE and INFORMAL CARE was zero for both injury groups, reflecting the functionally independent proportion of the sample previously identified. As outlined in Section 3.6.3.1, the number of hours of care per week was capped at 168. The maximum number of weekly care hours for the TBI group was 168 (24/7 care). This would have been slightly higher if the maximum cap was not applied. In contrast, the maximum weekly care hours for the SCI group was 82.6, less than half of the TBI
group. The standard deviation and interquartile ranges reflect the far greater variation in weekly care hours for the TBI group.
Table 5-2 Weekly care hours: FORMAL CARE and INFORMAL CARE breakdown
Weekly care hours
Mean (SD) Median (IQR) Min Max
Used (n,%) TBI group (n=81) FORMAL CARE 12.3 (30.7) 0.0 (7.1) 0.0 168.0 38 (47%) INFORMAL CARE 15.4 (30.8) 2.0 (19.3) 0.0 168.0 53 (65%) Total 27.4 (42.1) 8.0 (35.8) 0.0 168.0 60 (74%) SCI Group (n=30) FORMAL CARE 13.9 (20.2) 4.0 (25.2) 0.0 82.6 22 (73%) INFORMAL CARE 20.1 (19.9) 17.9 (34.1) 0.0 59.0 24 (80%) Total 33.9 (27.8) 26.7 (36.9) 0.0 99.4 29 (96%)
Note: SD = Standard deviation. IQR = Interquartile range.
The incremental distribution of FORMAL CARE and INFORMAL CARE hours were then examined for each injury group. For the TBI group (Figure 5-1), the distribution was positively skewed for both FORMAL CARE and INFORMAL CARE. Overall, 25.9% (21/81) of TBI participants did not use any FORMAL CARE or INFORMAL CARE. The corresponding proportion was 53% (43/81) for FORMAL CARE and 34% (28/81) for INFORMAL CARE. Three participants utilised more than 100 hours of FORMAL CARE per week and two (different) participants utilised more than 100 hours of INFORMAL CARE per week.
For the SCI group, the distribution of FORMAL CARE and INFORMAL CARE hours was not uniform (Figure 5-2). Here, only 3% (n=1) of participants did not use any FORMAL CARE or INFORMAL CARE. Twenty-six percent (8/30) utilised FORMAL CARE and 20% (6/30) utilised INFORMAL CARE. Further, no SCI participants utilised more than 100 hours of either FORMAL CARE or INFORMAL CARE per week.
Figure 5-1 Distribution of FORMAL CARE and INFORMAL CARE: TBI (n=81)
FORMAL CARE and INFORMAL CARE were then broken down and examined at the level of PERSONAL CARE, HOME SUPPORT and PARTICIPATION SUPPORT (Table 5-3). In terms of total number of hours of FORMAL CARE and INFORMAL CARE , in the TBI group PERSONAL CARE represented the largest proportion (45%), HOME SUPPORT was slightly lower (39%), and PARTICIPATION SUPPORT made up the smallest component (16%). In contrast, for the SCI group, HOME SUPPORT clearly represented the largest proportion (67%), followed by PERSONAL CARE (27%) and PARTICIPATION SUPPORT (6%).
A similar pattern was reflected in the percentage of participants who utilised each service type. A larger proportion of SCI participants utilised PERSONAL CARE and HOME SUPPORT with 97% of the SCI group utilising HOME SUPPORT, compared with only 55% of the TBI group. However, the range of hours was greater for the TBI group, as reflected by the interquartile range and maximum values. For both injury groups, less than 50% of participants utilised PARTICIPATION SUPPORT.
The distribution between FORMAL CARE and INFORMAL CARE at this level also differed between the two injury groups. Most notably, for the TBI group, the proportion of PERSONAL CARE provided on a formal versus informal basis was very similar. In contrast, for the SCI group, the proportion of PERSONAL CARE provided on a formal basis was more than double the amount provided on an informal basis. The greater variability in the use of services by the TBI group relative to the SCI group was also indicated by the standard deviation, interquartile range and maximum scores across all three types of care and for both FORMAL CARE and INFORMAL CARE. At this level, it becomes clear that the 24/7 (168 hours per week) services being utilised by a small number of TBI participants relates to the use of PERSONAL CARE rather than HOME SUPPORT or PARTICIPATION SUPPORT.
Table 5-3 Weekly hours: PERSONAL CARE, HOME SUPPORT and PARTICIPATION SUPPORT TBI SCI Mean (SD) Median (IQR) Max Used (n,%) Mean (SD) Median (IQR) Max Used (n,%)
PERSONAL CARE FORMAL 6.8 (24.5) 0.0 (0.0) 168 17 (21%) 6.3 (10.0) 0.0 (10.0) 34 13 (43%) PERSONAL CARE INFORMAL 6.3 (24.8) 0.0 (0.8) 168 24 (30%) 3.0 (6.3) 0.0 (1.8) 21 11 (37%)
Total PERSONAL CARE 12.9 (34.1) 0.0 (6.0) 168 34 (42%) 9.3 (12.7) 1.8 (15.8) 45 16 (53%) HOME SUPPORT FORMAL 3.4 (7.7) 0.0 (1.5) 42 30 (37%) 6.5 (12.5) 2.3 (5.9) 61 20 (67%) HOME SUPPORT INFORMAL 7.8 (12.8) 1.0 (9.5) 55 48 (59%) 15.8 (16.7) 13.0 (24.7) 56 22 (73%)
Total HOME SUPPORT 11.2 (15.1) 4.0 (21.3) 68 55 (68%) 22.2 (18.4) 20.5 (27.9) 61 29 (97%)
PARTICIPATIONSUPORTFORMAL 2.5 (6.2) 0.0 (0.8) 38 27 (33%) 1.1 (4.6) 0.0 (0.0) 25 6 (20%) PARTICIPATION SUPPORT INFORMAL 2.3 (5.4) 0.0 (0.8) 23 25 (31%) 0.7 (1.5) 0.0 (0.8) 6 9 (30%)
Total PARTICIPATION SUPPORT 4.8 (8.3) 0.0 (6.0) 40 40 (49%) 1.8 (5.2) 0.0 (1.6) 28 12 (40%) Note: SD = Standard deviation. IQR = Interquartile range.
Finally, PERSONAL CARE, HOME SUPPORT and PARTICIPATION SUPPORT were further broken down and examined at the lowest available level, the 27 individual service categories (listed in Table 5-1). Each category was examined in relation to formal and informal services (Table 5-4 to Table 5-6). First, Table 5-4 summarises the utilisation of 11 PERSONAL CARE services. In relation to formal services, for the TBI group, the number of hours of service and the proportion of participants who utilised each service was evenly distributed. TBI participants utilised each of the ten specific (excluding the ‘other’ category) activities of daily living. However, only a relatively small subset of participants (between 7% and 12%) utilised each service, suggesting that a large proportion of the TBI population does not use these services. Assistance with communication had the highest level of service use, with a mean of two hours per week and a maximum of 112 hours per week, four times higher than the next most utilised service. For the SCI group, the proportion of participants using each service was more spread (ranging from 0% to 40%), with several services attracting negligible use. Assistance with eating had the highest level of service use in this group, with a mean of 1.48 hours per week.
In relation to informal services, for the TBI group, assistance with communication represented 70% of total service utilisation in this area. The average weekly use of the remaining 10 services was less than one hour per week. For all categories, with the exception of the communication and other, the use of informal PERSONAL CARE was less than the corresponding use of formal PERSONAL CARE, and several categories had negligible service use. For the SCI group, the distribution of service use across categories was similar to formal services. However, a lower proportion of participants utilised each service on an informal basis.
Table 5-4 Weekly hours: formal and informal PERSONAL CARE by service category TBI (n=81) SCI (n=30) Item Formal/ Informal Mean hours (SD) Max hours Used (yes) (n,%) Mean hours (SD) Max hours Used (yes) (n,%) Eating Formal 0.8 (3.9) 25.0 8 (10%) 1.5 (3.5) 12.5 6 (20%) Informal 0.6 (2.2) 14.0 10 (12%) 0.4 (1.3) 5.0 4 (13%) Grooming Formal 0.6 (2.5) 14.0 10 (12%) 0.5 (1.2) 5.0 9 (30%) Informal 0.3 (1.2) 7.0 10 (12%) 0.1 (0.5) 2.0 3 (10%) Bathing Formal 0.5 (1.9) 14.0 10 (12%) 0.9 (1.5) 6.0 10 (33%) Informal 0.2 (0.9) 7.0 6 (7%) 0.2 (0.8) 4.0 3 (10%) Dressing Formal 0.9 (3.6) 28.0 10 (12%) 1.0 (1.4) 3.8 12 (40%) Informal 0.3 (1.2) 7.0 8 (10%) 0.5 (1.9) 10.0 4 (13%) Toileting Formal 1.2 (4.0) 21.0 9 (11%) 1.1 (1.9) 6.0 11 (37%) Informal 0.0 (0.0) 0.5 1 (1%) 0.3 (1.3) 7.0 3 (10%) Transfer bed/chair Formal 0.7 (2.7) 15.0 8 (10%) 0.8 (1.6) 6.3 8 (27%) Informal 0.1 (0.4) 3.5 2 (2%) 0.5 (1.4) 7.0 6 (20%) Transfer bath shower Formal 0.3 (1.2) 7.0 8 (10%) 0.0 (0.1) 0.4 1 (3%) Informal 0.1 (0.9) 7.0 2 (2%) 0.1 (0.5) 2.5 2 (7%) Transfer toilet Formal 0.5 (2.2) 15.0 6 (7%) 0.1 (0.7) 4.0 1 (3%) Informal 0.0 (0.1) 0.5 1 (1%) 0.3 (1.3) 7.0 3 (10%) Communicating Formal 2.0 (12.6) 112.0 9 (11%) 0.0 (0.0) 0.0 0 (0%)
Informal 4.6 (22.6) 168.0
11
(14%) 0.5 (2.6) 14.0 1 (3%) Equipment maintenance Formal 0.3 (1.4) 10.0 7 (9%) 0.2 (0.4) 1.6 5 (17%) Informal 0.1 (0.3) 2.0 4 (5%) 0.2 (0.6) 2.3 6 (20%) Other PERSONAL CARE Formal 0.0 (0.0) 0.0 0 (0%) 0.2 (0.5) 2.3 4 (13%) Informal 0.1 (0.5) 4.0 2 (2%) 0.2 (0.5) 2.5 7 (23%)
PERSONAL CARE TOTAL Formal 6.6 (21.7) 168.0 17 (21%) 6.3 (10.0) 34.1 13 (43%)
PERSONAL CARE TOTAL Informal 6.2 (24.2) 168.0 24 (30%) 2.3 (6.3) 21.0 11 (37%)
Second, Table 5-5 summarises the utilisation of nine formal and informal HOME SUPPORT services. In relation to formal HOME SUPPORT, for the TBI group, service use was concentrated in food preparation and housekeeping activities, which were also utilised by a relatively high proportion of participants (37% and 63% respectively). The average use of other services was less than one hour per week. For the SCI group, with the exception of the telephone and other categories, all services were utilised by between 11% and 25% of participants, but the average volume of service utilisation was less than one hour per week.
In relation to informal HOME SUPPORT, for the TBI group, service use was distributed across the nine activities, with food preparation representing the largest single activity (average 2.37 hours/week). For the SCI group, service use was heavily concentrated around food preparation and housekeeping with an average of between 4.5 and 5 hours per week each. Interestingly, these were not major areas of service utilisation for the SCI group on a formal basis, but were for the TBI group.
Table 5-5 Weekly hours - formal and informal HOME SUPPORT by service category Item Formal/ Informal Mean hours (SD) Max hours TBI (n=81) Used (yes) (n,%) Mean hours (SD) Max hour SCI (n=30) Used (yes) (n,%) Telephone Formal 0.0 (0.1) 0.3 4 (5%) 0.1 (0.7) 6.0 3 (10%) Informal 0.1 (0.5) 4.0 2 (7%) 0.0 (0.1) 0.3 8 (10%) Shopping Formal 0.2 (0.7) 3.0 14 (17%) 0.4 (1.1) 7.0 3 (10%) Informal 0.5 (1.1) 6.0 19 (63%) 1.6 (1.2) 10.0 26 (32%) Food preparation Formal 1.2 (4.1) 17.5 13 (16%) 0.7 (2.2) 14.0 11 (37%) Informal 2.4 (4.8) 30.0 16 (53%) 5.0 (5.8) 21.0 26 (32%) Housekeeping Formal 2.4 (4.7) 20.0 22 (27%) 0.8 (1.7) 7.0 19 (63%) Informal 0.8 (1.8) 7.0 17 (57%) 4.8 (8.1) 35.0 23 (28%) Laundry Formal 0.7 (1.6) 7.0 12 (15%) 0.3 (1.2) 7.0 7 (23%) Informal 0.8 (2.2) 14.0 18 (60%) 2.2 (2.8) 7.0 21 (26%) Transportation Formal 0.4 (1.2) 4.5 20 (25%) 0.8 (2.1) 11.5 4 (13%) Informal 2.2 (4.9) 30.0 9 (30%) 0.6 (1.3) 5.0 26 (32%) Medications Formal 0.6 (2.1) 10.5 9 (11%) 0.2 (0.9) 7.0 5 (17%) Informal 0.3 (1.2) 10.0 5 (17%) 0.2 (0.6) 3.0 10 (12%) Finances Formal 0.1 (0.4) 2.0 9 (11%) 0.1 (0.3) 1.5 1 (3%) Informal 0.6 (2.0) 15.0 12 (40%) 0.4 (1.0) 4.0 18 (22%) Other home support Formal 0.2 (0.6) 3.0 2 (2%) 0.1 (0.9) 7.0 5 (17%) Informal 0.2 (1.6) 14.0 9 (30%) 1.6 (3.0) 10.0 3 (4%)
HOME SUPPORT TOTAL Formal 6.5 (12.5) 61.0 30 (37%) 3.4 (7.7) 41.5 20 (67%) HOME SUPPORT TOTAL Informal 7.8 (12.8) 55.0 48 (59%) 15.8 (16.7) 56.0 22 (73%)
Note: Minimum weekly hours for all services was 0. SD = Standard deviation.
Finally, Table 5-6 summarises the utilisation of seven formal and informal PARTICIPATION SUPPORT services. As noted earlier in this section, PARTICIPATION SUPPORT represented the smallest area of service utilisation for both FORMAL CARE and INFORMAL CARE in both injury groups. For both FORMAL CARE and INFORMAL CARE, the TBI and SCI groups had several activities with negligible or no service utilisation. Leisure and recreation represented the area of greatest service utilisation for both TBI and SCI in terms of average number of weekly hours and the proportion of participants using the service. The reason for the overall lower use of PARTICIPATION SUPPORT services may be related to unmet need and is discussed in Section 5.2.1.
Table 5-6 Weekly hours: formal and informal PARTICIPATION SUPPORT by service category TBI (n=81) SCI (n=30) Item Formal/ Informal Mean hours (SD) Max hours Used (yes) (n,%) Mean hours (SD) Max hours Used (yes) (n,%) Leisure and recreation Formal 1.9 (5.4) 37.0 18 (22%) 0.9 (4.6) 25.0 4 (13%) Informal 1.2 (3.8) 21.0 13 (16%) 0.6 (1.3) 6.0 9 (30%) Advocacy and information Formal 0.2 (0.9) 8.1 8 (10%) 0.0 (0.0) 0.0 0 (0%) Informal 0.1 (0.3) 2.0 9 (11%) 0.0 (0.2) 1.0 1 (3%) Ethnic health services Formal 0.0 (0.0) 0.0 0 (0%) 0.0 (0.0) 0.0 0 (0%) Informal 0.0 (0.0) 0.0 0 (0%) 0.0 (0.0) 0.0 0 (0%) Legal services Formal 0.0 (0.1) 0.5 1 (1%) 0.0 (0.1) 0.5 1 (3%) Informal 0.1 (0.4) 4.0 1 (1%) 0.0 (0.2) 1.0 2 (7%) Financial services Formal 0.3 (1.7) 15.0 10 (12%) 0.1 (0.4) 2.0 1 (3%) Informal 0.3 (1.5) 12.0 0 (0%) 0.0 (0.2) 1.0 0 (0%) Vocation/education services Formal 0.2 (1.6) 14.0 4 (5%) 0.1 (0.3) 1.5 1 (3%) Informal 0.7 (3.2) 20.0 8 (10%) 0.0 (0.0) 0.0 0 (0%) Other participation services Formal 0.0 (0.0) 0.0 0 (0%) 0.0 (0.0) 0.0 0 (0%) Informal 0.0 (0.0) 0.0 0 (0%) 0.0 (0.0) 0.0 0 (0%)
PARTICIPATION SUPPORT TOTAL Formal 2.5 (6.2) 38.3 27 (33%) 1.1 (4.6) 25.0 6 (20%)
PARTICIPATION SUPPORT TOTAL Informal 2.3 (5.4) 23.0 25 (31%) 0.7 (1.5) 6.0 9 (30%)
Note: Minimum weekly hours for all services was 0. SD = Standard deviation.
5.2.1 UNMET NEEDS: FORMAL CARE and INFORMAL CARE
Participants were asked to identify any FORMAL CARE or INFORMAL CARE needs that were unmet (refer Section 3.3.1.5) or if they had other general comments about the availability of services to meet these needs. A total of 49 (TBI=28, SCI=21) unmet needs related to FORMAL CARE or INFORMAL CARE were reported. Interestingly, SCI participants reported a large number of unmet needs for PERSONAL CARE (71%) and HOME SUPPORT (53%). In contrast, TBI participants reported 74% of UNMET NEEDS for PARTICIPATION SUPPORT.
Drilling down, 6.3% of participants reported an unmet need for PERSONAL CARE (TBI: n = 2, SCI: n = 5), 17.0% for HOME SUPPORT (TBI: n = 9, SCI: n = 10), and 20.7% for PARTICIPATION SUPPORT (TBI: n = 17, SCI: n = 6). Across both TBI and SCI, the most commonly reported PERSONAL CARE UNMET NEEDS were for ‘general support’ and ‘dressing’. For home support, the most commonly reported unmet needs were for
transport, home maintenance and shopping. For PARTICIPATION SUPPORT, the most commonly reported unmet needs were assistance with social/recreational activities, advocacy, and employment.