Introduction 6 42 1 28 31 Palliative care is person-centered care that focuses on optimizing function and comfort in the setting of life-limiting illness. The patient, family member(s), and informal caregiver(s) comprise the “unit of care.” 14 2 20 53 33 9 47 50 56 58 5 22 66 43 40 59 40 24 43 59 40 59 34 27 28 68 50 51 7 13 17 19 55 7 53 54 65 2 41 63 15 48 16 1 SPCS meet the short-term needs of caregivers at the time they are providing support for someone with a life-limiting illness; and An association exists between SPCS use and differences in caregiver-defined long-term outcomes in the years after they have completed their role. Fig. 1 Conceptual model of the relationship between caregiving, ‘moving on’, specialized palliative care services (SPCS), and unmet needs  The null hypothesis was that SPCS were associated neither with differences in unmet needs nor with caregivers’ ability to move on after bereavement. Methods Setting and subjects 4 26 28 31 44 Survey methodology 16 67 16 2 Fig. 2 All palliative care survey questions embedded in the South Australian Health Omnibus Survey, 2001–2003  Caregiving was defined for the respondent as follows: “‘Care’ includes attention to any of the needs of the person, including hands-on care, overnight care, respite, shopping, collection of medications, taking to appointments, emotional support, bathing, etc.” To incorporate differing levels of caregiver burden into the analysis, respondents were asked if they provided: “day-to-day hands-on care” (care 5–7 days per week); “intermittent hands-on care” (care 2–4 days per week); or, “rare hands-on care” (care 1 or less days per week). While this method does not encompass information on caregivers’ multiple roles (e.g., parent, employee, spouse, and caregiver), it does stratify respondents along one axis of caregiver burden—the intensity of care provided. 2 40 24 3 Fig. 3 n  Data analysis 4 18 16 67 t p p 10 Sample size calculation 21 21 Results Response rate Population affected by a death 1 p Table 1 Characteristics of respondents who reported a death of a loved one due to a terminal illness and bereaved respondents who identified themselves as caregivers Characteristic All respondents who reported death of a loved one due to terminal illness Respondents who identified themselves as caregivers of the deceased individuals Respondents who were not caregivers of the deceased individuals P a N 3,340 (37) 949 (10) 2,391 (26)  Age group (years) 15–29 692 (21) 184 (19) 507 (21) 0.5087 30–44 946 (28) 274 (29) 673 (28) 45–59 912 (27) 274 (29) 638 (27) 60–74 518 (15) 147 (15) 371 (15) 75 and over 273 (8) 70 (7) 203 (8) Gender Male 1,558 (47) 362 (38) 1,196 (50) <0.0001 Female 1,782 (53) 587 (62) 1,196 (50) Marital status Married or de facto 2,215 (66) 603 (63) 1,612 (67) <0.0001 Separated or divorced 273 (8) 62 (7) 210 (9) Widowed 210 (6) 111 (12) 99 (4) Never married 643 (19. 173 (18) 470 (20) Residential location Metropolitan 2,270 (68) 645 (68) 1,625 (68) 0.9786 Rural 1,071 (32) 304 (32) 767 (32) Country of birth English-speaking background 2,992 (90) 859 (90) 2,133 (89) 0.4447 Non-English-speaking background 348 (10) 90 (9) 258 (11) Missing 1 (0)  1 (0)  Highest level of educational attainment Did not complete school, high school or still studying 1,660 (50) 479 (50) 1,182 (49) 0.6010 Trade qualification, certificate, diploma or higher 1,680 (50) 471 (50) 1,210 (51) Work status Work full-time or part-time 1,852 (55) 526 (55) 1,326 (55) 0.9910 Not working including home duties, student, retired, unemployed and other 1,488 (45) 423 (44) 1,066 (45) Values are numbers (percentages) a Caregivers affected by a death 1 1 p 2 p Table 2 Relationship between the caregiver and the decreased individual and characteristics of the care provided Relationship between the caregiver and the deceased individual n a 905 Family relationship Spouse/partner 92 (10) Child (of a parent who died) 209 (23) Parent (of a child who died) 61 (7) Sibling 37 (4) Other relative 303 (33) Friend 175 (19) Other 27 (3) Close relation (spouse/parent/child) 362 (40) Distant relation or friend 543 (60) Level of care provided Day-to-day hands-on care 321 (35) Intermittent hands-on care 344 (38) Rare hands-on care 240 (26) b Months [mean (SD)] 22.3 (37) Care for <1 year 134 (45) Care for ≥1 year 163 (55) Values are numbers (percentages) except as indicated a n b n Use of SPCS 3 p Table 3 Characteristics of the deceased individuals and use of specialized palliative care services (SPCS) Characteristics of the deceased individual SPCS involved in the care of the deceased individual SPCS not involved in the care of the deceased individual All deceased individuals cared for by caregiver respondents in this survey P a b 539 (60) 366 (40) 905 (100)  Recency of death Months [mean (SD)] 25.3 (17) 26.0 (18) 25.6 (17.6) 0.5578 Cause of death Cancer 454 (84) 235 (64) 689 (76) <0.0001 Noncancer 85 (16) 128 (35) 213 (24) Values are numbers (percentages) except as indicated a t b n Unmet needs of caregivers while delivering care and the use of SPCS 4 t p p p t p 4 Fig. 4 p numbers Vertical bars  Table 4 Five most frequently identified unmet needs of day-to-day hands-on caregivers (by percentage of respondents) Need for Percentage of respondents identifying this unmet need SPCS involved in the care of the deceased individual (n = 120) More help with the physical care of the person 22% More information about what to expect as the illness progressed 13% Better emotional support for the caregiver 13% Better emotional support for the person who had the life-limiting illness 13% More information about services that could be accessed 12% SPCS not involved in the care of the deceased individual (n = 88) Better emotional support for the caregiver 30% Better emotional support for the person who had the life-limiting illness 23% More information about services that could be accessed 22% More help with the physical care of the person 21% Better symptom control 19% Impact of SPCS on long-term caregiver outcomes 5 p 5 Fig. 5 Relationship between time and the ability to “move on” with life for those with and without involvement from a specialized palliative-care service (SPCS). Chi-square tests were used at each timepoint (likelihood of moving on by use of SPCS)  Table 5 Impact of specialized palliative care services (SPCS) on caregiver outcomes Outcome SPCS involved in the care of the deceased individual SPCS not involved in the care of the deceased individual P a N 537 364  Ability to “move on” with life  “I have been able to move on with my life” 464 (86) 281 (77) 0.0016  “I am starting to move on with my life” 60 (11) 67 (18)  “I have not been able to move on with my life” 13 (2) 16 (4) Experience vs. expectations  Better than expected 97 (18) 55 (15) 0.6310  As expected 172 (32) 121 (33)  Worse than expected 240 (45) 163 (45)  I didn’t know what to expect 27 (5) 22 (6) Values are numbers (percentages) a Predictors of caregivers’ ability to move on 6 Table 6 Multivariable logistic regression model (PROC LOGISTIC) predicting caregivers unlikely to “move on” with life Variables Odds-ratios (95% confidence interval) Age (years) 0.99 (0.98, 1.01) Gender (reference: female) Male 0.87 (0.58, 1.32) Marital status (reference: married) Separated or divorced 1.25 (0.58, 2.79) Widowed 1.75 (0.93, 3.29) Never married 1.25 (0.67, 2.32) Residential location (reference: metropolitan) Rural 0.87 (0.57, 1.33) Country of birth (reference English-speaking background) Non-English-speaking background 1.23 (0.65, 2.31) Highest level of educational attainment (reference: trade qualification, certificate, diploma, or higher) Didn’t complete school or still studying 0.96 (0.63, 1.45) Work status (reference: Work full or part time) Not working, home duties or other 1.43 (0.90, 2.25) Recency of death (reference: death >2 years ago) Death in past 2 years 2.58 (1.68, 3.97) Cause of death (reference: cancer) Noncancer 0.77 (0.47, 1.25) Family relationship (reference: distant relation or friend) Close relation (spouse/parent/child) 3.34 (2.13, 5.23) Level of care provided (reference: rare hands-on care) Day to day hands-on care 3.72 (1.93, 7.16) Intermittent hands-on care 2.42 (1.25, 4.69) Expectations vs experience (reference: Better than expected) As expected 1.33 (0.63, 2.78) Worse than expected/I didn’t know what to expect 3.43 (1.76, 6.68) Specialized palliative care service (SPCS) involvement (reference: No SPCS involvement) SPCS involved in the care of the deceased individual 0.54 (0.36, 0.80) Unlikely to “move on” with life is defined as “I am starting to move on or I have not moved on with my life” since the death of the individual Predictors of caregivers inability to move on 5 Discussion 2 12 25 30 31 45 46 48 49 61 64 41 16 Impact of SPCS on caregivers while in the role 31 24 Impact of SPCS on caregiver long-term outcomes 23 63 15 53 37 69 32 48 60 54 51 11 39 52 Other predictors of caregiver outcomes 57 59 8 29 36 Limitations to the study Because the area of caregiving is a relative newcomer to the realm of clinical research, a paucity of robust assessment measures is, as yet, a major limitation of studies in this population. In assessment of short-term caregiver outcomes, we developed a variable to indicate level of intensity of caregiving, which we could link to caregiver strain. We could not encompass in this variable other factors not provided by the 2001–2003 Omnibus dataset, such as roles that caregivers might have been simultaneously performing.Thus, within our measure of caregiver strain defined by intensity of caregiving, we were unable to differentiate those caregivers who performed multiple roles from those who were solely caregivers. 3 35 38 62 16 3 15 42 Future directions The relationship between fewer unmet needs and SPCS suggests that SPCS do provide substantial support in helping to plan care and identify contingencies in future care. An understanding of the specific attributes of SPCS that make the most difference in meeting caregivers’ needs will be pursued through future work using similar methods. Moving on was defined by respondents of a single year of the Health Omnibus Survey; broader validation is planned. Subsequent information will enable evaluation of whether moving on, as a measurable outcome, can be improved. An interesting line of inquiry, which would be made possible by inclusion of a baseline question in a future Health Omnibus Survey, is whether respondents who accessed SPCS were further along in the trajectory of psychological acceptance than were respondents who had not accessed SPCS. A positive correlation might indicate a self-selection bias in which respondents who had used SPCS and who had succeeded in moving on had a predisposition to move on, in comparison to respondents who had not chosen to access SPCS. While of academic interest, this information would not impact the utility of the finding that SPCS facilitated moving on among those individuals who accessed services. The methodological strength of the approach used in this study, in which we probed data collected via the Health Omnibus Survey to answer a health services question on the population level, could be improved by favorable comparison of data from the Omnibus on caregiver assessment to data collected using a validated caregiver assessment instrument. This step represents a possible future avenue of study but is not yet possible due to the lack of such an instrument. The relationship between caregivers’ expectations (diagnosis through death) and outcomes will be explored with two subsequent years of data. All results need to be confirmed in other health-delivery systems.