- Email: [email protected]
The desire for support and respite care: preferences of Dutch informal caregivers
Health Policy 68 (2004) 309–320
The desire for support and respite care: preferences of Dutch informal caregivers M.A. Koopmanschap a,b,∗ , N.J.A. van Exel a,b , G.A.M. van den Bos c,d , B. van den Berg a,c , W.B.F. Brouwer a,b b
a Department of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands Institute for Medical Technology Assessment, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands c National Institute of Public Health and the Environment, Bilthoven, The Netherlands d Department of Social Medicine, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
Received 24 March 2003; received in revised form 20 October 2003; accepted 20 October 2003
Abstract Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42–47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care. © 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Informal care; Caregivers; Respite care; Preferences
1. Introduction Informal care has become an indispensable element in the care for many dependent elderly and for many ∗ Corresponding author. Tel.: +31-104088561; fax: +31-104089094. E-mail address: [email protected] (M.A. Koopmanschap).
chronically ill patients. Need for economising on expenditures in the health care sector has for instance led to programmes reducing length of institutionalization. In some countries, successive budget cuts have lead to waiting lists. In addition, patients increasingly express the desire for care at home rather than institutionalization, both for chronic conditions and in the terminal stage of a fatal disease. Taken together, patients stay home longer before institutionalisation or return home
0168-8510/$ – see front matter © 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2003.10.002
310
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
earlier, often at higher levels of dependency. Add to this, the ageing of the population and it becomes apparent that the demand for home and informal care has increased and that this shift from formal to informal care will continue to increase in the near future. At the same time, modern western societies are also characterized by increasing individualisation, larger social distance, and more single parent and two-earner households. These socio-cultural trends are associated with a downward pressure on the supply of informal care, making it increasingly unlikely that supply will meet demand for informal care. Already now, even in modern western societies, a large part of the citizens provides some form of informal care during their lifetime [1]. Being the primary informal caregiver of a chronically ill patient may be quite burdensome. For instance, it was recently reported that elderly spousal caregivers may develop health complaints that elevate their risk of mortality [2]. Caregivers who develop serious health problems can sometimes no longer perform their care giving tasks. Therefore, in order to maintain a sustainable input of caregivers it seems important to identify those at risk of other health problems or burn out, and subsequently try to alleviate their burden of care giving. Thus, far research was predominantly focused on support and respite care as instruments to alleviate the burden of caregiving and on the supply of several types of respite care [3–6]. More recently, the effectiveness (and cost-effectiveness) of respite care has been addressed [7,8]. The demand for support and respite care, i.e., the type of care informal caregivers prefer in different situations and the underlying determinants, has been largely neglected. Nevertheless, information on the demand side may generate useful data for designing respite care programs to be evaluated; see for example the meta-analysis of McNally et al. [7]. In this paper, we present the results of a study of caregivers’ demand for support and respite care. As part of a larger empirical study regarding informal care in The Netherlands [9], we investigated caregivers’ demand for support and respite care in general, for specific types, and related this to characteristics of the caregiver, the care recipient, the caregiving situation and some institutional variables. The aim of this study is to shed more light on caregivers’ preferences regarding support and respite care. Because this is a first ex-
ploratory analysis—and taking advantage of the large data set—we included a broad array of explanatory factors.
2. Data and methods 2.1. Study population During the period November 2001–February 2002, we sent a postal questionnaire to 3000 informal caregivers who are known to regional informal care centres, which offer information, organize self-help groups and help with directions to formal care. Our sample therefore is not representative of informal caregivers in The Netherlands. Since we were interested in the preferences for support and respite care and associations with characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables, we deliberately focused on a subgroup of primary informal caregivers who were expected to have provided a substantial amount of informal care for a longer period of time. This subgroup is expected to be more at risk of health problems and burn out, and consequently more in need of support and respite care. For a general description of the study sample, we refer to [9]. We received completed questionnaires from 950 informal caregivers (response rate 32%). We feel this is a very reasonable response for a sizeable postal questionnaire sent out to a population of strained caregivers. No information on non-responders is available. 2.2. Conceptual model Support care is defined as providing practical and emotional support or information to caregivers to improve their caregiving capabilities. Respite care is defined as taking over informal care temporarily in order to give the caregiver a break and/or enable the caregiver to participate in other (predominantly social) activities [6]. Viewing the literature, support and respite care may take several forms. They cover a spectrum ranging from expert centres and self help groups to relief home care, day centre care, weekend lodging and respite hospitalisation up to 2 months [3–8]. To get a clue on caregivers’ preferences for support and respite care and potential underlying determinants
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Caregiver characteristics
Care recipient characteristics
311
Desire for support and respite care
Subjective burden (negative and positive aspects)
Discrepancy
Maximum tolerable burden
Caregiving situation
Institutional variables Fig. 1. A preliminary model of determinants of the desire for support/respite care.
it seems advisable to take a closer look at the process of informal care giving. Theory in occupational medicine concerning a worker’s situation provides a useful analogy for the informal caregiver. For people with a job, work demands and work methods produce a certain level of physical and mental workload. If this workload is structurally at or beyond the maximal working capacity the strain may become substantial, possibly leading to stress and burn out. The probability of a burn out depends, among other things, on the worker’s degree of decision latitude to mitigate the strain between workload and working capacity [10]. Caregiving seems to be a somewhat similar process. Subjective burden, the workload of the care task as experienced by the caregiver, is affected by characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables (see Fig. 1). This burden consists of negative aspects, putting strain on the informal caregiver as well as positive aspects of caregiving, providing satisfaction and self-esteem for the caregiver. 2.3. Variables Regarding the demand for support and respite care, the questionnaire starts with asking for the general desire for support/respite care and subsequently asks for several forms of support and respite care, based on a review of the literature and existing Dutch initiatives:
• Communication with other informal care givers; • More information from professional caregivers (to provide better care); • A (part of the) day off each week; • A weekend off; • A week off; • Else, . . . (to be filled in by the respondent). With respect to the three variants mentioned for caregivers’ time off, we did not specify how the respite care was exactly provided, it could for example take the form of day care or respite hospitalisation. The questionnaire of the larger study on informal care [9] also covered all the determinants of subjective caregiver burden (see Fig. 1). Caregiver characteristics include age, gender, employment status, health status, reason for providing informal care and general cultural orientation. Care recipient characteristics focus on health status. The caregiving situation is characterised in terms of the objective burden of caregiving, that is for instance the care tasks performed and the time investment. Most important institutional variables are paid leave arrangements, patient budgets and waiting lists for formal health care. A full list of the considered variables is included in Table 1. Because this is a first explorative study into the determinants of support and respite care, we included a broad array of potential explanatory variables from
312
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Table 1 Expected associations between preference for support/respite care and characteristics of the informal caregivers, care recipients, caregiving situation and institutional variables Limiting preference Caregivers Age Gender X Having a paid job (%) X Valuation own income X Number of diseases Quality of life (Euroqol-5D; X range −0.5 to 1) Main reason for becoming informal caregiver Obligatory Other X Cultural values Distribution of power (hierarchical) Individualism (vs. collectivism) Masculinity (vs. femininity) Uncertainty avoidance X Care recipient Number of diseases Type of disease: mental (vs. physical) Caregiving situation Objective burden Number of care tasks Time invested in care tasks (hours per day) Duration of caregiving (in years) Other caregivers available (yes) Professional home care (yes) Being care recipient’s partner (yes) Subjective burden Caregiver strain index Self rated burden Positive caregiving aspects Institutional variables Use of paid leave (yes) Having a patient budget (yes) Care recipient on waiting list (yes)
Increasing preference X X X X
X
X X X X X X
X X X X X X
X X X
X X X X
the questionnaire. Some circumstances may raise the subjective burden of caregiving, increasing the discrepancy between actual burden and maximum tolerable burden, and subsequently the desire for support and respite care. Other factors may alleviate caregiver burden, give the caregiver more decision latitude and consequently limit the desire for support and respite
care. Apart from influencing the perceived burden of care giving, variables may of course also have an independent influence on the preference for (forms of) support and respite care. Table 1 includes our ex-ante expectations regarding the relation between subjective burden and the explanatory variables. For instance, a patient budget may allow the care recipient to purchase his/her own care or arrangements for paid leave (a short emergency leave or a longer career leave). The number of diseases of the care recipient is expected to increase burden and need for respite care. With respect to the care recipient’s type of disease, we expect that mental disease and (even more) a combination of physical and mental disease will be more burdensome. For some variables, it however, seems rather difficult to predict the impact on preferences for support and respite care, because evidence is lacking or ambiguous. For example, being the partner of the care recipient may induce a higher burden ceteris paribus, but this burden may be better tolerable (with less need for support/respite care) because of experiencing more satisfaction if one cares for his/her partner than for other people. A second example may be having paid work: on the one hand it may facilitate purchasing more professional (respite) care, on the other hand it may limit the time available for informal care, what may result in being less satisfied with one’s role of caregiver. 2.4. Measurement instruments The caregiver strain index (CSI) is a validated instrument that consists of 13 statements on which the caregiver has to indicate agreement on a dichotomous no/yes scale. Scores on the CSI range between 0 and 13, a higher indicating a higher subjective burden of informal caregiving [11]. Previous researchers have used a measure of CSI > 6 to identify substantial burden [13,14]. Accordingly, informal caregivers in our population were assigned to either a “moderate burden” group (i.e., CSI scores between 0 and 6) or a “substantial burden” group (i.e., CSI scores between 7 and 13). It was demonstrated that caregivers (for stroke patients) with a considerable burden have a significantly lower quality of life [15]. See Appendix A for more details. Self-rated burden (SRB) is a self-developed visual analogue scale to rate the overall subjective burden of care giving [12]. It is a scale ranging between 0 and
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
100, zero indicating no burden at all and 100 a much too heavy burden. See Appendix B for more details. The positive aspects the caregiver may experience from providing care was also measured using visual analogue scales. We asked informal caregivers to indicate their current happiness on a 0 (completely unhappy) to 100 (completely happy) scale. Next we asked, ‘How they would rate their happiness if someone they could elect themselves would take over all care tasks?’ The difference between the two levels of happiness may range between −100 and 100, with a (higher) negative score indicating (more) positive satisfaction from caregiving. For more details on the instrument see [16]. Health related quality of life was assessed in terms of their health related quality of life using the EuroQol-5D [17]. General cultural orientation was assessed by asking the caregiver’s opinion on eight items (C1–C8) regarding four important cultural values: the distribution of power in a society, individualism versus collectivism, masculinity versus femininity and uncertainty avoidance [18]. For more details see Appendix C. 2.5. Statistical analysis Caregivers’ preferences for (forms of) support and respite care are presented by common descriptive statistics. The desire for (specific types of) support and respite care could be answered with a simple ‘yes’ or ‘no’. Therefore we used a logistic regression model to explain the determinants of the fraction of respondents who opt for the particular type of support or respite care. In order to see if the desire for support versus respite care would differ from the perspective of the informal caregiver, we performed a secondary analysis aggregating the three time off variants into respite care and the communication and information variant into support care. If a caregiver filled in at least one of the underlying categories, he or she is rated as having a preference for the aggregated form of support or respite care. We used the following explanatory variables in the logistic regression model (see Table 1). Explanatory variables that alleviate actual caregiver burden are expected to limit the preference for support and respite care and therefore a negative sign is expected, while
313
for those that increase the burden we expect a positive sign. The analyses were performed in SPSS 10.0. 3. Results 3.1. Characteristics of the study population The average age of the caregivers is 60 years, 77% of them are female, 76% are married. A quarter of the caregivers performs paid work, 42% are Table 2 Characteristics of the informal caregivers, care recipients, caregiving situation and institutional variables (n = 950)
Caregivers Age (in years) Gender (% female) Having a paid job (%) Valuation own income: (very) insufficient Number of diseases Quality of life (Euroqol-5D; range −0.5 to 1) Care recipient Number of diseases Type of disease Physical Mental Both Caregiving situation Objective burden Number of care tasks (objective burden) Time invested in care tasks (objective burden) hours per day Duration of caregiving (in years) Other caregivers available (% yes) Professional home care (% yes) Being care recipient’s partner (%) Subjective burden Caregiver strain index (range 0–13) Self rated burden (range 0–100) Positive caregiving aspects (range −100 to 100) Institutional variables Use of paid leave (%) Having a patient budget (%) Care recipient on waiting list (%)
Average/ fraction
Standard deviation
60.2 77% 25% 27%
12.1
2.0 0.76
2.1 0.23
2.9
2.4
52% 18% 30%
8.5
3.7
7.0
7.2
9.2 43% 58% 50%
8.6
7.9 58 −6.5
3.3 27 36.6
4% 18% 12%
314
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
housewives/-men and 21% are retired. More than half of the group provides care at home (59%) for their partner (50%) or another family member (39%). The informal caregivers provide on average 7 h of informal care per day, for a period of 9 years. More details on the population are provided by van Exel [9]. As compared to representative Dutch data [1], the informal caregivers in this study provide more care for a longer period, see the discussion for more details. The distribution of all explanatory variables is presented in Table 2. 3.2. The preference for support and respite care Table 3 shows that almost 80% of the respondents desire support or respite care in general. Looking at support and respite care, respectively, 57% of the informal caregivers desired some sort of support care and 65% some type of respite care. When specifying the type of support or respite care, 42–47% would prefer more communication with other informal caregivers or more information from professional caregivers, while about 40% of the respondents desired some time off, provided that they are adequately replaced. A substantial part of the caregivers that filled in the open category mentioned a form of support in care giving or time off. As far as possible, these answers were recoded and are included in the figures presented in Table 3. For policy purposes, we feel it is probably most relevant to identify which informal caregivers are at risk for burn out and would especially be in need of support and respite care. Consequently, we would expect in this study that the fraction of the caregivers with sub-
stantial burden (CSI > 6) desiring support or respite care is higher than average. The last column of Table 3 clearly confirms this hypothesis. For all forms of support and respite care, the fractions of substantially burdened caregivers preferring it are significantly higher than those of moderately burdened caregivers. 3.3. Regression results Table 4 shows the results of the logistic regression analyses for each type of support and respite care. All variables mentioned in Table 1 entered the analysis, but only the odds ratios for the significant variables (P-values < 0.10) and their exact P-values are presented in Table 4. For example, an odds ratio of 2.3 for paid work indicates that having paid work elevates the probability of desiring a weekend off by 2.3%. The low chi-square values for all types of support and respite care indicate that the regression models in general are satisfactory with respect to explaining the desire for support and respite care. Almost all significant variables have the expected sign. 3.4. Subjective burden The parameters measuring subjective burden—CSI and SRB—seem to be important for support and respite care in general and for specific types of support and respite care. The positive aspects the caregiver derives from care giving appears to be relevant for respite care: the less satisfaction derived from providing care, the larger the desire for support and respite care in general and for a week off in particular.
Table 3 The desire for general and specific types of support and respite care Type of support/respite care
With preference (%)
Valid N
With preference among those considerably burdened (%) (CSI > 6)
Support/respite care in general
79.8
909
93a
Support care aggregated Communication with other informal care givers More information of professional caregivers
57.3 46.8 42.4
878 878 870
72a 60a 53a
Respite care aggregated A part of a day off each week A weekend off A week off
64.7 41.4 39.2 42.5
873 869 870 865
83a 56a 53a 55a
a
Significantly different from moderately burdened caregivers (CSI ≤ 6; Chi-square test: P < 0.001).
Table 4 Logistic regression coefficients (odds ratios) and P-values for significant variables (P-value < 0.1) explaining the desire for each type of support/respite care General Support and respite care
Communication
Institutional variables Use of paid leave Professional home care Care recipient on waiting list −2 log L P-value 2
More information
Aggregated
(Part) day off per week
Weekend off
Week off
Aggregated
0.970 (0.018) 0.629 (0.094)
0.715 (.059)
2.287 (.008) 0.644 (.016)
0.660 (.049)
1.140 (0.066) 0.530 (0.064) 1.491 (0.089)
1.374 (0.087)
Care recipient Number of diseases Caregiving situation Time invested in care tasks Other caregivers available Being care recipient’s partner Subjective burden CSI SRB Positive caregiving aspects
Respite care
0.895 (0.067) 1.001 (0.075) 0.669 (0.086)
1.606 (0.057) 2.344 (0.004)
1.376 (0.000) 1.029 (0.001) 1.014 (0.019)
1.241 (0.000)
1.102 (0.078) 1.010 (0.099)
1.232 (0.000) 1.013 (0.030)
1.252 (0.000)
1.338 (0.000) 1.022 (0.001) 1.021 (0.000)
3.962 (0.022)
1.303 (0.000) 1.017 (0.016)
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Caregiver Age Having a paid job Valuation own income Number of diseases C2 C3
Support
5.595 (0.056)
0.617 (0.054) 8.241 (0.064) 239.905 0.000
494.696 0.000
517.897 0.000
480.776 0.000
476.870 0.000
463.120 0.000
451.983 0.000
364.264 0.000
Note: we found no significant coefficients for gender, health related quality of life of the caregiver, main reason for becoming informal caregiver, C1 and C4–C8, type of disease care recipient, duration of caregiving, the presence of professional home care, and having a patient budget.
315
316
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
3.5. Caregiver characteristics Younger caregivers have higher preference for communication with other caregivers. Being the partner of the care recipient raises the preference for a specific form of respite care: a part of the day off each week. The lower the income is valued, the higher the need for time off, perhaps because financial problems make it difficult to arrange replacement; having paid work increases the need for a weekend off. The health status of the caregiver gives mixed results. The more diseases the caregiver has, the higher the need for a day off per week. However, health related quality of life of the caregiver is never a significant factor, presumably because in this sample, the quality of life of the caregivers is about the same as for the general population of the same age, while its variance is limited (see Table 2). Obligation as the main reason to become an informal caregiver did not affect the desire for any type of support or respite care. Regarding the general cultural orientation, caregivers tending to egalitarianism (low power distance) express more desire for communication, while more individualistic caregivers have a stronger preference for respite care. 3.6. Care recipient characteristics The more diseases the care recipient has, the lower the caregiver’s desire for respite care, perhaps reflecting the fear to leave the care recipient alone in a more complex caregiving situation. 3.7. The caregiving situation Surprisingly, the objective burden hardly seems to matter; only the total time invested in care positively influences the desire for a week off. If other caregivers are present that share some of the care tasks, the primary informal caregiver less often desires more information from professionals, but oddly more often desires a part of the day off per week.
the day off per week and for respite care in general. Having professional home care increases the desire for communication with other caregivers. 3.9. Support versus respite care In order to see if support versus respite care have distinct sets of explanatory variables, we also aggregated the time off variants into respite care and the communication and information into support care. In explaining the need for support care, only the subjective burden of care seems to be relevant. Both measures of subjective burden—CSI and SRB—are positively related to the need for support care (see Table 4). For aggregated respite care (time off), these subjective burden measures are important as well, along with the valuation of own income, tendency toward individualism, the number of diseases of the care recipient and the use of paid leave. 3.10. Some illustrations In addition to the significance of parameters in explaining the desire for support and respite care, we are interested in the magnitude of the impact of these variables. Because in logistic regression odds ratios should be interpreted differently as compared to coefficients in linear regression models, we here provide examples of the expected probability of desire for support and respite care for two typical informal caregivers. 3.10.1. Example 1 A woman aged 65 is the partner of the care recipient being cared for. Currently, she does not have paid work and she performs eight different care tasks. She has a moderate subjective caregiver burden (at the average of the sample). The care recipient is on the waiting list for professional care. According to the first regression model her probability to desire general support and respite care is 92%, clearly above the sample average of 80%. For a weekend off, the model expects a probability of 50% (on average 40%).
3.8. Institutional variables The care recipient being on the waiting list for professional care substantially increases the desire for general support and respite care (with 8%). Having paid leave from work raises the desire for a part of
3.10.2. Example 2 A woman aged 45 is the daughter of the care recipient being cared for. She has paid work and performs five different care tasks. She has a limited subjective caregiver burden (below average of the sample). The
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
care recipient is not on the waiting list for professional care. According to the first regression model, her probability to desire general support and respite care is 47%, clearly below average. For a weekend off, the model expects her probability to be 42%, comparable to the average of 40%.
4. Discussion This explorative study has shed some light on informal caregivers’ preferences for support and respite care and the way in which these are associated with characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables. Though this study is just a modest starting point, our results do provide a clear indication that the subjective burden of caregiving is the most important determinant of the desire for support and respite care. In this study, we used three different variables that relate to elements of subjective burden: the CSI, SRB and a measure of positive care aspects. We did this on purpose, because it was a first exploratory study and these measures differ both in content as well as layout, and focus on different, probably complementary aspects of subjective burden. Especially, the CSI and SRB measures turn out to be significant in explaining the desire for support and respite care. The Pearson correlation coefficient between these two instruments was 0.635, which indicates a significant correlation, but a limited risk of multicollinearity, so it is acceptable to use them both in a regression analysis. The Pearson correlations for the positive caregiving aspects versus the CSI and SRB range from 0.41 to 0.45. Dropping the variable for positive caregiving aspects from the regression analysis is not necessary and may bias the estimated coefficients on any variable that is correlated with it [19]. In the preliminary conceptual model (see Fig. 1), subjective burden has a central role as intermediary variable in explaining the desire for support and respite care. However, some variables, especially caregiver characteristics, may (also) influence the desire for support and respite care directly. Therefore, we decided to put subjective burden measures and other explanatory variables together in the logistic regression analysis. It is perhaps not very surprising that from the caregiver characteristics, the valuation of own income ap-
317
pears to play the most significant role. This probably reflects the financial problems many caregivers face because of income loss and additional costs related to care giving. Differently from what we expected, the cultural values of the informal caregiver do not seem to affect the desire for support and respite care very much; only the tendency toward individualism appears to be associated with desire for respite care. Although our research does not show a clear relation between cultural values and preferences for support and respite care, we may not conclude they play no significant role. Especially, when extrapolating these findings to other countries one should be cautious, as research showed that cultural values may vary considerably within as well as between countries. Nevertheless, whatever the cultural values or place of residence of the informal caregiver, the association between substantial subjective burden and desire for support and respite care seems clear and plausible. With respect to The Netherlands, our sample represents a subgroup of informal caregivers performing a more intensive task than the “average informal caregiver” [1,9]. Our caregivers are more often partner of the care recipient (50% versus 14%), they provide more care per day (7 h versus 2.6 h), for a longer period (9 years versus 9 months). The national Dutch study further confirms that primary caregivers and partners provide substantially more care than the average informal caregiver. Hence, our conclusions only relate to this subgroup of informal caregivers, who are presumably the main target group for support and respite care. Our recommendation for policymakers therefore would be the following: if you want to rely on informal care as an important input in health care in the long run, keep a close watch on the subjective burden of the informal caregivers; try to identify caregivers at risk and offer them tailor made support and/or respite care, that is, according to their preferences. Note, however, that although support and respite care programs are often implicitly supposed to be cost-effective, evidence is limited. In order to make support and respite care a worthwhile component of total health care, experiments should be thoroughly evaluated on their costs and health effects. Some limitations of this study need mentioning. First, we only asked for preferences in a dichotomous way (a yes or a no). Hence, we did not measure the intensity of these preferences and we cannot make
318
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
an ordering of preferences by priority that may actually prevail in the caregivers mind. Future research should preferably take this issue into account. Second, the preferences for support and respite care were not elicited in a situation with forced choices in which other elements of the caregiver situation should be valued simultaneously. It would be advisable to incorporate types of support and respite care together with other elements as an attribute in caregivers situations, so called vignettes, to be analyzed with conjoint measurement techniques [20]. Third, we did not specifically asked if the respondents actually used some type of support and/or respite care. Presumably, a considerable fraction of respondents use some sort of support care, because they presented themselves at an organization delivering such services. The actual use of respite care is difficult to estimate, because many forms of respite care are provided by home care agencies and will be interpreted as home care by the respondents. We only know from the national Dutch study on informal care that about 10% of the informal caregivers indicated that the care recipient visited a day care center.
5. Conclusion This paper contains two types of information relevant to health policy. First, caregivers’ preferences for different types of support and respite care programs can be compared to the existing supply (and evidence on cost-effectiveness) of these programs. Second, the associations between caregivers’ preferences and characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables provides a focus regarding the most urgent target groups. Supplying informal caregivers with the preferred support and/or respite care—obviously provided that they are cost-effective—will help ensure the future supply of this important element of health care.
Appendix A A.1. Caregiver strain index (CSI) I am going to read a list of things which other people have found to be difficult in helping out after some-
body comes home from the hospital. Would you tell me whether any of these apply to you? (GIVE EXAMPLES) Yes
No
Sleep is disturbed (e.g., because . . . is in and out of bed or wanders around at night) It is inconvenient (e.g., because helping takes so much time or it’s a long drive over to help) It is a physical strain (e.g., because of lifting in and out of a chair; effort or concentration is required) It is confining (e.g., because helping restricts free time or cannot go visiting) There have been family adjustments (e.g., because helping has disrupted routine; there has been no privacy) There have been changes in personal plans (e.g., because had to turn down a job; could not go on vacation) There have been other demands on my time (e.g., from other family members) There have been emotional adjustments (e.g., because of severe arguments) Some behavior is upsetting (e.g., because of incontinence; . . . has trouble remembering things; or . . . accuses people of taking things) It is upsetting to find that . . . has changed so much from his/her former self (e.g., because he/she is a different person than he/she used to be) There have been work adjustments (e.g., because of having to take time off) It is a financial strain Feeling completely overwhelmed (e.g., because of worry about . . . ; concerns about how you will manage) Total score (count yes responses) Note: The informal caregiver has to indicate agreement to each statement on the dichotomous yes/no scale. The sum score on the CSI ranges between 0 and 13. Higher scores indicate higher burden.
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
319
Appendix B B.1. Self-rated burden (SRB) On the scale below “0” means that you feel that caring for or accompanying . . . at the moment is not hard at all; “100” means that you feel that caring for or accompanying . . . at the moment is much too hard. Please indicate with an “X” on the scale how burdensome you feel caring for or accompanying your partner is at the moment.
Appendix C C.1. Please indicate whether you agree or disagree with the following statements agree
neutral
disagree
C1. Parents should treat their children like equals, not based on obedience C2. Everyone should have equal rights, powerful or rich people should not have more privileges C3. An honest person expresses his opinions, even at cost of the harmony in the group C4. Individual interests are superior to group interests C5. In the family the father is concerned with facts and the mother with feelings C6. Society should concentrate on caring for the week, not on opportunities for the strong C7. There should be no more rules than strictly necessary C8. Citizens should be emancipated toward government Note: these statements is a small selection of items per cultural value based on [18]. References [1] SCP. Timmermans JM, editor. Informal care, about support from and to informal care (in Dutch). The Hague; 2003. [2] Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 1999;282(23): 2215–9. [3] Simon C, Kumar S, Kendrick T. Who cares for the carers? The district nurse perspective. Family Practice 2002;19(1):29–35. [4] Bass DM, Noelker LS, Rechlin LR. The moderating influence of service use on negative caregiving consequences. Journal of Gerontology 1996;51B(3):s121–31. [5] Weuve JL, Boult C, Morishita L. The effects of outpatient geriatric evaluation and management on caregiver burden. The Gerontologist 2000;40(4):429–36.
[6] Knapen M, van der Lyke S, van Lier W, de Jong Y. Respite care in The Netherlands (in Dutch). Utrecht: EIZ; 2002. [7] McNally S, Ben-Shlomo Y, Newman S. The effects of respite care on informal carers well-being: a systematic review. Disability and Rehabilitation 1999;21(1):1–14. [8] Colvez A, Joel ME, Ponton-Sanchez A, Royer AC. Health status and work burden of Alzheimer patients informal caregivers. Comparisons of five different care programs in the European Union. Health Policy 2002;60:219–33. [9] Van Exel NJA, Van den Berg B, Van den Bos GAM, Koopmanschap MA, Brouwer WBF. Informal care in The Netherlands: a situational sketch of informal care-providers reached by Informal Care Centres. iMTA report 02.58b. Rotterdam: Erasmus MC; 2002. Available from: http://www.bmg.eur.nl/imta/reports.
320
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
[10] de Zwart BCH. Ageing in physically demanding work. A study on musculoskeletal complaints. Ph.D. Thesis, University of Amsterdam; 1997. [11] Robinson BC. Validation of a caregiver Strain Index. Journal of Gerontology 1983;38(3):344–8. [12] van Exel NJA, Scholte op Reimer WJM, Brouwer WBF, van den Berg B, Koopmanschap MA, van den Bos GAM. Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden” Clinical Rehabilitation, in press. [13] Brugge C, Alexander H, Hagen S. Stroke patients’ informal caregivers: patient, caregiver, and service factors that affect caregiver strain. Stroke 1999;20:1517–23. [14] Wilkinson PR, Wolfe CDA, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, Beech RR. A long-term follow-up of stroke patients. Stroke 1997;28:507–12.
[15] van Exel NJA, Koopmanschap MA, van den Berg B, van den Bos GAM, Brouwer WBF, Scholte op Reimer WJM, Burden of informal caregiving for stroke patients: identification of caregivers at risk of adverse health effects, in press. [16] Brouwer WBF, van Exel NJA, van den Berg B, van den Bos GAM, Koopmanschap MA. Process utility from providing informal care: the benefit of caring, in press. [17] The EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 1999;16(3):199–208. See also http://www.euroqol.org. [18] Hofstede G. All dissenters handling cultural differences (in Dutch). Amsterdam: Contact. 2000. [19] Stewart MB, Wallis KF. Introductory econometrics. Oxford: Basil Blackwell; 1984. [20] van den Berg B, Al M, Brouwer W, van Exel J, Koopmanschap M. Valuation of informal care: the conjoint measurement method applied in informal caregiving, in press.
The desire for support and respite care: preferences of Dutch informal caregivers M.A. Koopmanschap a,b,∗ , N.J.A. van Exel a,b , G.A.M. van den Bos c,d , B. van den Berg a,c , W.B.F. Brouwer a,b b
a Department of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands Institute for Medical Technology Assessment, Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands c National Institute of Public Health and the Environment, Bilthoven, The Netherlands d Department of Social Medicine, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
Received 24 March 2003; received in revised form 20 October 2003; accepted 20 October 2003
Abstract Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42–47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care. © 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Informal care; Caregivers; Respite care; Preferences
1. Introduction Informal care has become an indispensable element in the care for many dependent elderly and for many ∗ Corresponding author. Tel.: +31-104088561; fax: +31-104089094. E-mail address: [email protected] (M.A. Koopmanschap).
chronically ill patients. Need for economising on expenditures in the health care sector has for instance led to programmes reducing length of institutionalization. In some countries, successive budget cuts have lead to waiting lists. In addition, patients increasingly express the desire for care at home rather than institutionalization, both for chronic conditions and in the terminal stage of a fatal disease. Taken together, patients stay home longer before institutionalisation or return home
0168-8510/$ – see front matter © 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2003.10.002
310
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
earlier, often at higher levels of dependency. Add to this, the ageing of the population and it becomes apparent that the demand for home and informal care has increased and that this shift from formal to informal care will continue to increase in the near future. At the same time, modern western societies are also characterized by increasing individualisation, larger social distance, and more single parent and two-earner households. These socio-cultural trends are associated with a downward pressure on the supply of informal care, making it increasingly unlikely that supply will meet demand for informal care. Already now, even in modern western societies, a large part of the citizens provides some form of informal care during their lifetime [1]. Being the primary informal caregiver of a chronically ill patient may be quite burdensome. For instance, it was recently reported that elderly spousal caregivers may develop health complaints that elevate their risk of mortality [2]. Caregivers who develop serious health problems can sometimes no longer perform their care giving tasks. Therefore, in order to maintain a sustainable input of caregivers it seems important to identify those at risk of other health problems or burn out, and subsequently try to alleviate their burden of care giving. Thus, far research was predominantly focused on support and respite care as instruments to alleviate the burden of caregiving and on the supply of several types of respite care [3–6]. More recently, the effectiveness (and cost-effectiveness) of respite care has been addressed [7,8]. The demand for support and respite care, i.e., the type of care informal caregivers prefer in different situations and the underlying determinants, has been largely neglected. Nevertheless, information on the demand side may generate useful data for designing respite care programs to be evaluated; see for example the meta-analysis of McNally et al. [7]. In this paper, we present the results of a study of caregivers’ demand for support and respite care. As part of a larger empirical study regarding informal care in The Netherlands [9], we investigated caregivers’ demand for support and respite care in general, for specific types, and related this to characteristics of the caregiver, the care recipient, the caregiving situation and some institutional variables. The aim of this study is to shed more light on caregivers’ preferences regarding support and respite care. Because this is a first ex-
ploratory analysis—and taking advantage of the large data set—we included a broad array of explanatory factors.
2. Data and methods 2.1. Study population During the period November 2001–February 2002, we sent a postal questionnaire to 3000 informal caregivers who are known to regional informal care centres, which offer information, organize self-help groups and help with directions to formal care. Our sample therefore is not representative of informal caregivers in The Netherlands. Since we were interested in the preferences for support and respite care and associations with characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables, we deliberately focused on a subgroup of primary informal caregivers who were expected to have provided a substantial amount of informal care for a longer period of time. This subgroup is expected to be more at risk of health problems and burn out, and consequently more in need of support and respite care. For a general description of the study sample, we refer to [9]. We received completed questionnaires from 950 informal caregivers (response rate 32%). We feel this is a very reasonable response for a sizeable postal questionnaire sent out to a population of strained caregivers. No information on non-responders is available. 2.2. Conceptual model Support care is defined as providing practical and emotional support or information to caregivers to improve their caregiving capabilities. Respite care is defined as taking over informal care temporarily in order to give the caregiver a break and/or enable the caregiver to participate in other (predominantly social) activities [6]. Viewing the literature, support and respite care may take several forms. They cover a spectrum ranging from expert centres and self help groups to relief home care, day centre care, weekend lodging and respite hospitalisation up to 2 months [3–8]. To get a clue on caregivers’ preferences for support and respite care and potential underlying determinants
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Caregiver characteristics
Care recipient characteristics
311
Desire for support and respite care
Subjective burden (negative and positive aspects)
Discrepancy
Maximum tolerable burden
Caregiving situation
Institutional variables Fig. 1. A preliminary model of determinants of the desire for support/respite care.
it seems advisable to take a closer look at the process of informal care giving. Theory in occupational medicine concerning a worker’s situation provides a useful analogy for the informal caregiver. For people with a job, work demands and work methods produce a certain level of physical and mental workload. If this workload is structurally at or beyond the maximal working capacity the strain may become substantial, possibly leading to stress and burn out. The probability of a burn out depends, among other things, on the worker’s degree of decision latitude to mitigate the strain between workload and working capacity [10]. Caregiving seems to be a somewhat similar process. Subjective burden, the workload of the care task as experienced by the caregiver, is affected by characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables (see Fig. 1). This burden consists of negative aspects, putting strain on the informal caregiver as well as positive aspects of caregiving, providing satisfaction and self-esteem for the caregiver. 2.3. Variables Regarding the demand for support and respite care, the questionnaire starts with asking for the general desire for support/respite care and subsequently asks for several forms of support and respite care, based on a review of the literature and existing Dutch initiatives:
• Communication with other informal care givers; • More information from professional caregivers (to provide better care); • A (part of the) day off each week; • A weekend off; • A week off; • Else, . . . (to be filled in by the respondent). With respect to the three variants mentioned for caregivers’ time off, we did not specify how the respite care was exactly provided, it could for example take the form of day care or respite hospitalisation. The questionnaire of the larger study on informal care [9] also covered all the determinants of subjective caregiver burden (see Fig. 1). Caregiver characteristics include age, gender, employment status, health status, reason for providing informal care and general cultural orientation. Care recipient characteristics focus on health status. The caregiving situation is characterised in terms of the objective burden of caregiving, that is for instance the care tasks performed and the time investment. Most important institutional variables are paid leave arrangements, patient budgets and waiting lists for formal health care. A full list of the considered variables is included in Table 1. Because this is a first explorative study into the determinants of support and respite care, we included a broad array of potential explanatory variables from
312
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Table 1 Expected associations between preference for support/respite care and characteristics of the informal caregivers, care recipients, caregiving situation and institutional variables Limiting preference Caregivers Age Gender X Having a paid job (%) X Valuation own income X Number of diseases Quality of life (Euroqol-5D; X range −0.5 to 1) Main reason for becoming informal caregiver Obligatory Other X Cultural values Distribution of power (hierarchical) Individualism (vs. collectivism) Masculinity (vs. femininity) Uncertainty avoidance X Care recipient Number of diseases Type of disease: mental (vs. physical) Caregiving situation Objective burden Number of care tasks Time invested in care tasks (hours per day) Duration of caregiving (in years) Other caregivers available (yes) Professional home care (yes) Being care recipient’s partner (yes) Subjective burden Caregiver strain index Self rated burden Positive caregiving aspects Institutional variables Use of paid leave (yes) Having a patient budget (yes) Care recipient on waiting list (yes)
Increasing preference X X X X
X
X X X X X X
X X X X X X
X X X
X X X X
the questionnaire. Some circumstances may raise the subjective burden of caregiving, increasing the discrepancy between actual burden and maximum tolerable burden, and subsequently the desire for support and respite care. Other factors may alleviate caregiver burden, give the caregiver more decision latitude and consequently limit the desire for support and respite
care. Apart from influencing the perceived burden of care giving, variables may of course also have an independent influence on the preference for (forms of) support and respite care. Table 1 includes our ex-ante expectations regarding the relation between subjective burden and the explanatory variables. For instance, a patient budget may allow the care recipient to purchase his/her own care or arrangements for paid leave (a short emergency leave or a longer career leave). The number of diseases of the care recipient is expected to increase burden and need for respite care. With respect to the care recipient’s type of disease, we expect that mental disease and (even more) a combination of physical and mental disease will be more burdensome. For some variables, it however, seems rather difficult to predict the impact on preferences for support and respite care, because evidence is lacking or ambiguous. For example, being the partner of the care recipient may induce a higher burden ceteris paribus, but this burden may be better tolerable (with less need for support/respite care) because of experiencing more satisfaction if one cares for his/her partner than for other people. A second example may be having paid work: on the one hand it may facilitate purchasing more professional (respite) care, on the other hand it may limit the time available for informal care, what may result in being less satisfied with one’s role of caregiver. 2.4. Measurement instruments The caregiver strain index (CSI) is a validated instrument that consists of 13 statements on which the caregiver has to indicate agreement on a dichotomous no/yes scale. Scores on the CSI range between 0 and 13, a higher indicating a higher subjective burden of informal caregiving [11]. Previous researchers have used a measure of CSI > 6 to identify substantial burden [13,14]. Accordingly, informal caregivers in our population were assigned to either a “moderate burden” group (i.e., CSI scores between 0 and 6) or a “substantial burden” group (i.e., CSI scores between 7 and 13). It was demonstrated that caregivers (for stroke patients) with a considerable burden have a significantly lower quality of life [15]. See Appendix A for more details. Self-rated burden (SRB) is a self-developed visual analogue scale to rate the overall subjective burden of care giving [12]. It is a scale ranging between 0 and
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
100, zero indicating no burden at all and 100 a much too heavy burden. See Appendix B for more details. The positive aspects the caregiver may experience from providing care was also measured using visual analogue scales. We asked informal caregivers to indicate their current happiness on a 0 (completely unhappy) to 100 (completely happy) scale. Next we asked, ‘How they would rate their happiness if someone they could elect themselves would take over all care tasks?’ The difference between the two levels of happiness may range between −100 and 100, with a (higher) negative score indicating (more) positive satisfaction from caregiving. For more details on the instrument see [16]. Health related quality of life was assessed in terms of their health related quality of life using the EuroQol-5D [17]. General cultural orientation was assessed by asking the caregiver’s opinion on eight items (C1–C8) regarding four important cultural values: the distribution of power in a society, individualism versus collectivism, masculinity versus femininity and uncertainty avoidance [18]. For more details see Appendix C. 2.5. Statistical analysis Caregivers’ preferences for (forms of) support and respite care are presented by common descriptive statistics. The desire for (specific types of) support and respite care could be answered with a simple ‘yes’ or ‘no’. Therefore we used a logistic regression model to explain the determinants of the fraction of respondents who opt for the particular type of support or respite care. In order to see if the desire for support versus respite care would differ from the perspective of the informal caregiver, we performed a secondary analysis aggregating the three time off variants into respite care and the communication and information variant into support care. If a caregiver filled in at least one of the underlying categories, he or she is rated as having a preference for the aggregated form of support or respite care. We used the following explanatory variables in the logistic regression model (see Table 1). Explanatory variables that alleviate actual caregiver burden are expected to limit the preference for support and respite care and therefore a negative sign is expected, while
313
for those that increase the burden we expect a positive sign. The analyses were performed in SPSS 10.0. 3. Results 3.1. Characteristics of the study population The average age of the caregivers is 60 years, 77% of them are female, 76% are married. A quarter of the caregivers performs paid work, 42% are Table 2 Characteristics of the informal caregivers, care recipients, caregiving situation and institutional variables (n = 950)
Caregivers Age (in years) Gender (% female) Having a paid job (%) Valuation own income: (very) insufficient Number of diseases Quality of life (Euroqol-5D; range −0.5 to 1) Care recipient Number of diseases Type of disease Physical Mental Both Caregiving situation Objective burden Number of care tasks (objective burden) Time invested in care tasks (objective burden) hours per day Duration of caregiving (in years) Other caregivers available (% yes) Professional home care (% yes) Being care recipient’s partner (%) Subjective burden Caregiver strain index (range 0–13) Self rated burden (range 0–100) Positive caregiving aspects (range −100 to 100) Institutional variables Use of paid leave (%) Having a patient budget (%) Care recipient on waiting list (%)
Average/ fraction
Standard deviation
60.2 77% 25% 27%
12.1
2.0 0.76
2.1 0.23
2.9
2.4
52% 18% 30%
8.5
3.7
7.0
7.2
9.2 43% 58% 50%
8.6
7.9 58 −6.5
3.3 27 36.6
4% 18% 12%
314
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
housewives/-men and 21% are retired. More than half of the group provides care at home (59%) for their partner (50%) or another family member (39%). The informal caregivers provide on average 7 h of informal care per day, for a period of 9 years. More details on the population are provided by van Exel [9]. As compared to representative Dutch data [1], the informal caregivers in this study provide more care for a longer period, see the discussion for more details. The distribution of all explanatory variables is presented in Table 2. 3.2. The preference for support and respite care Table 3 shows that almost 80% of the respondents desire support or respite care in general. Looking at support and respite care, respectively, 57% of the informal caregivers desired some sort of support care and 65% some type of respite care. When specifying the type of support or respite care, 42–47% would prefer more communication with other informal caregivers or more information from professional caregivers, while about 40% of the respondents desired some time off, provided that they are adequately replaced. A substantial part of the caregivers that filled in the open category mentioned a form of support in care giving or time off. As far as possible, these answers were recoded and are included in the figures presented in Table 3. For policy purposes, we feel it is probably most relevant to identify which informal caregivers are at risk for burn out and would especially be in need of support and respite care. Consequently, we would expect in this study that the fraction of the caregivers with sub-
stantial burden (CSI > 6) desiring support or respite care is higher than average. The last column of Table 3 clearly confirms this hypothesis. For all forms of support and respite care, the fractions of substantially burdened caregivers preferring it are significantly higher than those of moderately burdened caregivers. 3.3. Regression results Table 4 shows the results of the logistic regression analyses for each type of support and respite care. All variables mentioned in Table 1 entered the analysis, but only the odds ratios for the significant variables (P-values < 0.10) and their exact P-values are presented in Table 4. For example, an odds ratio of 2.3 for paid work indicates that having paid work elevates the probability of desiring a weekend off by 2.3%. The low chi-square values for all types of support and respite care indicate that the regression models in general are satisfactory with respect to explaining the desire for support and respite care. Almost all significant variables have the expected sign. 3.4. Subjective burden The parameters measuring subjective burden—CSI and SRB—seem to be important for support and respite care in general and for specific types of support and respite care. The positive aspects the caregiver derives from care giving appears to be relevant for respite care: the less satisfaction derived from providing care, the larger the desire for support and respite care in general and for a week off in particular.
Table 3 The desire for general and specific types of support and respite care Type of support/respite care
With preference (%)
Valid N
With preference among those considerably burdened (%) (CSI > 6)
Support/respite care in general
79.8
909
93a
Support care aggregated Communication with other informal care givers More information of professional caregivers
57.3 46.8 42.4
878 878 870
72a 60a 53a
Respite care aggregated A part of a day off each week A weekend off A week off
64.7 41.4 39.2 42.5
873 869 870 865
83a 56a 53a 55a
a
Significantly different from moderately burdened caregivers (CSI ≤ 6; Chi-square test: P < 0.001).
Table 4 Logistic regression coefficients (odds ratios) and P-values for significant variables (P-value < 0.1) explaining the desire for each type of support/respite care General Support and respite care
Communication
Institutional variables Use of paid leave Professional home care Care recipient on waiting list −2 log L P-value 2
More information
Aggregated
(Part) day off per week
Weekend off
Week off
Aggregated
0.970 (0.018) 0.629 (0.094)
0.715 (.059)
2.287 (.008) 0.644 (.016)
0.660 (.049)
1.140 (0.066) 0.530 (0.064) 1.491 (0.089)
1.374 (0.087)
Care recipient Number of diseases Caregiving situation Time invested in care tasks Other caregivers available Being care recipient’s partner Subjective burden CSI SRB Positive caregiving aspects
Respite care
0.895 (0.067) 1.001 (0.075) 0.669 (0.086)
1.606 (0.057) 2.344 (0.004)
1.376 (0.000) 1.029 (0.001) 1.014 (0.019)
1.241 (0.000)
1.102 (0.078) 1.010 (0.099)
1.232 (0.000) 1.013 (0.030)
1.252 (0.000)
1.338 (0.000) 1.022 (0.001) 1.021 (0.000)
3.962 (0.022)
1.303 (0.000) 1.017 (0.016)
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
Caregiver Age Having a paid job Valuation own income Number of diseases C2 C3
Support
5.595 (0.056)
0.617 (0.054) 8.241 (0.064) 239.905 0.000
494.696 0.000
517.897 0.000
480.776 0.000
476.870 0.000
463.120 0.000
451.983 0.000
364.264 0.000
Note: we found no significant coefficients for gender, health related quality of life of the caregiver, main reason for becoming informal caregiver, C1 and C4–C8, type of disease care recipient, duration of caregiving, the presence of professional home care, and having a patient budget.
315
316
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
3.5. Caregiver characteristics Younger caregivers have higher preference for communication with other caregivers. Being the partner of the care recipient raises the preference for a specific form of respite care: a part of the day off each week. The lower the income is valued, the higher the need for time off, perhaps because financial problems make it difficult to arrange replacement; having paid work increases the need for a weekend off. The health status of the caregiver gives mixed results. The more diseases the caregiver has, the higher the need for a day off per week. However, health related quality of life of the caregiver is never a significant factor, presumably because in this sample, the quality of life of the caregivers is about the same as for the general population of the same age, while its variance is limited (see Table 2). Obligation as the main reason to become an informal caregiver did not affect the desire for any type of support or respite care. Regarding the general cultural orientation, caregivers tending to egalitarianism (low power distance) express more desire for communication, while more individualistic caregivers have a stronger preference for respite care. 3.6. Care recipient characteristics The more diseases the care recipient has, the lower the caregiver’s desire for respite care, perhaps reflecting the fear to leave the care recipient alone in a more complex caregiving situation. 3.7. The caregiving situation Surprisingly, the objective burden hardly seems to matter; only the total time invested in care positively influences the desire for a week off. If other caregivers are present that share some of the care tasks, the primary informal caregiver less often desires more information from professionals, but oddly more often desires a part of the day off per week.
the day off per week and for respite care in general. Having professional home care increases the desire for communication with other caregivers. 3.9. Support versus respite care In order to see if support versus respite care have distinct sets of explanatory variables, we also aggregated the time off variants into respite care and the communication and information into support care. In explaining the need for support care, only the subjective burden of care seems to be relevant. Both measures of subjective burden—CSI and SRB—are positively related to the need for support care (see Table 4). For aggregated respite care (time off), these subjective burden measures are important as well, along with the valuation of own income, tendency toward individualism, the number of diseases of the care recipient and the use of paid leave. 3.10. Some illustrations In addition to the significance of parameters in explaining the desire for support and respite care, we are interested in the magnitude of the impact of these variables. Because in logistic regression odds ratios should be interpreted differently as compared to coefficients in linear regression models, we here provide examples of the expected probability of desire for support and respite care for two typical informal caregivers. 3.10.1. Example 1 A woman aged 65 is the partner of the care recipient being cared for. Currently, she does not have paid work and she performs eight different care tasks. She has a moderate subjective caregiver burden (at the average of the sample). The care recipient is on the waiting list for professional care. According to the first regression model her probability to desire general support and respite care is 92%, clearly above the sample average of 80%. For a weekend off, the model expects a probability of 50% (on average 40%).
3.8. Institutional variables The care recipient being on the waiting list for professional care substantially increases the desire for general support and respite care (with 8%). Having paid leave from work raises the desire for a part of
3.10.2. Example 2 A woman aged 45 is the daughter of the care recipient being cared for. She has paid work and performs five different care tasks. She has a limited subjective caregiver burden (below average of the sample). The
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
care recipient is not on the waiting list for professional care. According to the first regression model, her probability to desire general support and respite care is 47%, clearly below average. For a weekend off, the model expects her probability to be 42%, comparable to the average of 40%.
4. Discussion This explorative study has shed some light on informal caregivers’ preferences for support and respite care and the way in which these are associated with characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables. Though this study is just a modest starting point, our results do provide a clear indication that the subjective burden of caregiving is the most important determinant of the desire for support and respite care. In this study, we used three different variables that relate to elements of subjective burden: the CSI, SRB and a measure of positive care aspects. We did this on purpose, because it was a first exploratory study and these measures differ both in content as well as layout, and focus on different, probably complementary aspects of subjective burden. Especially, the CSI and SRB measures turn out to be significant in explaining the desire for support and respite care. The Pearson correlation coefficient between these two instruments was 0.635, which indicates a significant correlation, but a limited risk of multicollinearity, so it is acceptable to use them both in a regression analysis. The Pearson correlations for the positive caregiving aspects versus the CSI and SRB range from 0.41 to 0.45. Dropping the variable for positive caregiving aspects from the regression analysis is not necessary and may bias the estimated coefficients on any variable that is correlated with it [19]. In the preliminary conceptual model (see Fig. 1), subjective burden has a central role as intermediary variable in explaining the desire for support and respite care. However, some variables, especially caregiver characteristics, may (also) influence the desire for support and respite care directly. Therefore, we decided to put subjective burden measures and other explanatory variables together in the logistic regression analysis. It is perhaps not very surprising that from the caregiver characteristics, the valuation of own income ap-
317
pears to play the most significant role. This probably reflects the financial problems many caregivers face because of income loss and additional costs related to care giving. Differently from what we expected, the cultural values of the informal caregiver do not seem to affect the desire for support and respite care very much; only the tendency toward individualism appears to be associated with desire for respite care. Although our research does not show a clear relation between cultural values and preferences for support and respite care, we may not conclude they play no significant role. Especially, when extrapolating these findings to other countries one should be cautious, as research showed that cultural values may vary considerably within as well as between countries. Nevertheless, whatever the cultural values or place of residence of the informal caregiver, the association between substantial subjective burden and desire for support and respite care seems clear and plausible. With respect to The Netherlands, our sample represents a subgroup of informal caregivers performing a more intensive task than the “average informal caregiver” [1,9]. Our caregivers are more often partner of the care recipient (50% versus 14%), they provide more care per day (7 h versus 2.6 h), for a longer period (9 years versus 9 months). The national Dutch study further confirms that primary caregivers and partners provide substantially more care than the average informal caregiver. Hence, our conclusions only relate to this subgroup of informal caregivers, who are presumably the main target group for support and respite care. Our recommendation for policymakers therefore would be the following: if you want to rely on informal care as an important input in health care in the long run, keep a close watch on the subjective burden of the informal caregivers; try to identify caregivers at risk and offer them tailor made support and/or respite care, that is, according to their preferences. Note, however, that although support and respite care programs are often implicitly supposed to be cost-effective, evidence is limited. In order to make support and respite care a worthwhile component of total health care, experiments should be thoroughly evaluated on their costs and health effects. Some limitations of this study need mentioning. First, we only asked for preferences in a dichotomous way (a yes or a no). Hence, we did not measure the intensity of these preferences and we cannot make
318
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
an ordering of preferences by priority that may actually prevail in the caregivers mind. Future research should preferably take this issue into account. Second, the preferences for support and respite care were not elicited in a situation with forced choices in which other elements of the caregiver situation should be valued simultaneously. It would be advisable to incorporate types of support and respite care together with other elements as an attribute in caregivers situations, so called vignettes, to be analyzed with conjoint measurement techniques [20]. Third, we did not specifically asked if the respondents actually used some type of support and/or respite care. Presumably, a considerable fraction of respondents use some sort of support care, because they presented themselves at an organization delivering such services. The actual use of respite care is difficult to estimate, because many forms of respite care are provided by home care agencies and will be interpreted as home care by the respondents. We only know from the national Dutch study on informal care that about 10% of the informal caregivers indicated that the care recipient visited a day care center.
5. Conclusion This paper contains two types of information relevant to health policy. First, caregivers’ preferences for different types of support and respite care programs can be compared to the existing supply (and evidence on cost-effectiveness) of these programs. Second, the associations between caregivers’ preferences and characteristics of the caregiver, the care recipient, the caregiving situation and institutional variables provides a focus regarding the most urgent target groups. Supplying informal caregivers with the preferred support and/or respite care—obviously provided that they are cost-effective—will help ensure the future supply of this important element of health care.
Appendix A A.1. Caregiver strain index (CSI) I am going to read a list of things which other people have found to be difficult in helping out after some-
body comes home from the hospital. Would you tell me whether any of these apply to you? (GIVE EXAMPLES) Yes
No
Sleep is disturbed (e.g., because . . . is in and out of bed or wanders around at night) It is inconvenient (e.g., because helping takes so much time or it’s a long drive over to help) It is a physical strain (e.g., because of lifting in and out of a chair; effort or concentration is required) It is confining (e.g., because helping restricts free time or cannot go visiting) There have been family adjustments (e.g., because helping has disrupted routine; there has been no privacy) There have been changes in personal plans (e.g., because had to turn down a job; could not go on vacation) There have been other demands on my time (e.g., from other family members) There have been emotional adjustments (e.g., because of severe arguments) Some behavior is upsetting (e.g., because of incontinence; . . . has trouble remembering things; or . . . accuses people of taking things) It is upsetting to find that . . . has changed so much from his/her former self (e.g., because he/she is a different person than he/she used to be) There have been work adjustments (e.g., because of having to take time off) It is a financial strain Feeling completely overwhelmed (e.g., because of worry about . . . ; concerns about how you will manage) Total score (count yes responses) Note: The informal caregiver has to indicate agreement to each statement on the dichotomous yes/no scale. The sum score on the CSI ranges between 0 and 13. Higher scores indicate higher burden.
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
319
Appendix B B.1. Self-rated burden (SRB) On the scale below “0” means that you feel that caring for or accompanying . . . at the moment is not hard at all; “100” means that you feel that caring for or accompanying . . . at the moment is much too hard. Please indicate with an “X” on the scale how burdensome you feel caring for or accompanying your partner is at the moment.
Appendix C C.1. Please indicate whether you agree or disagree with the following statements agree
neutral
disagree
C1. Parents should treat their children like equals, not based on obedience C2. Everyone should have equal rights, powerful or rich people should not have more privileges C3. An honest person expresses his opinions, even at cost of the harmony in the group C4. Individual interests are superior to group interests C5. In the family the father is concerned with facts and the mother with feelings C6. Society should concentrate on caring for the week, not on opportunities for the strong C7. There should be no more rules than strictly necessary C8. Citizens should be emancipated toward government Note: these statements is a small selection of items per cultural value based on [18]. References [1] SCP. Timmermans JM, editor. Informal care, about support from and to informal care (in Dutch). The Hague; 2003. [2] Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 1999;282(23): 2215–9. [3] Simon C, Kumar S, Kendrick T. Who cares for the carers? The district nurse perspective. Family Practice 2002;19(1):29–35. [4] Bass DM, Noelker LS, Rechlin LR. The moderating influence of service use on negative caregiving consequences. Journal of Gerontology 1996;51B(3):s121–31. [5] Weuve JL, Boult C, Morishita L. The effects of outpatient geriatric evaluation and management on caregiver burden. The Gerontologist 2000;40(4):429–36.
[6] Knapen M, van der Lyke S, van Lier W, de Jong Y. Respite care in The Netherlands (in Dutch). Utrecht: EIZ; 2002. [7] McNally S, Ben-Shlomo Y, Newman S. The effects of respite care on informal carers well-being: a systematic review. Disability and Rehabilitation 1999;21(1):1–14. [8] Colvez A, Joel ME, Ponton-Sanchez A, Royer AC. Health status and work burden of Alzheimer patients informal caregivers. Comparisons of five different care programs in the European Union. Health Policy 2002;60:219–33. [9] Van Exel NJA, Van den Berg B, Van den Bos GAM, Koopmanschap MA, Brouwer WBF. Informal care in The Netherlands: a situational sketch of informal care-providers reached by Informal Care Centres. iMTA report 02.58b. Rotterdam: Erasmus MC; 2002. Available from: http://www.bmg.eur.nl/imta/reports.
320
M.A. Koopmanschap et al. / Health Policy 68 (2004) 309–320
[10] de Zwart BCH. Ageing in physically demanding work. A study on musculoskeletal complaints. Ph.D. Thesis, University of Amsterdam; 1997. [11] Robinson BC. Validation of a caregiver Strain Index. Journal of Gerontology 1983;38(3):344–8. [12] van Exel NJA, Scholte op Reimer WJM, Brouwer WBF, van den Berg B, Koopmanschap MA, van den Bos GAM. Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden” Clinical Rehabilitation, in press. [13] Brugge C, Alexander H, Hagen S. Stroke patients’ informal caregivers: patient, caregiver, and service factors that affect caregiver strain. Stroke 1999;20:1517–23. [14] Wilkinson PR, Wolfe CDA, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, Beech RR. A long-term follow-up of stroke patients. Stroke 1997;28:507–12.
[15] van Exel NJA, Koopmanschap MA, van den Berg B, van den Bos GAM, Brouwer WBF, Scholte op Reimer WJM, Burden of informal caregiving for stroke patients: identification of caregivers at risk of adverse health effects, in press. [16] Brouwer WBF, van Exel NJA, van den Berg B, van den Bos GAM, Koopmanschap MA. Process utility from providing informal care: the benefit of caring, in press. [17] The EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 1999;16(3):199–208. See also http://www.euroqol.org. [18] Hofstede G. All dissenters handling cultural differences (in Dutch). Amsterdam: Contact. 2000. [19] Stewart MB, Wallis KF. Introductory econometrics. Oxford: Basil Blackwell; 1984. [20] van den Berg B, Al M, Brouwer W, van Exel J, Koopmanschap M. Valuation of informal care: the conjoint measurement method applied in informal caregiving, in press.