Abstract

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and 472 similar caregivers who were under 55 years of age. The results indicated that the older caregivers compared with younger ones reported a lower quality of life, less family support, a more negative perception of having a family member with intellectual disability, and greater worries about the future care arrangements of the adult with intellectual disability. Statistical analysis showed that predisposing, enabling, and need factors influenced the caregivers' future caregiving options.

For older caregivers, caregiving for a family member with intellectual disability may last for over 5 decades. Future care plans might be more important to an older family caring for an adult with intellectual disability living with the family because parents who are elderly need to face their own aging to arrange the adult's future care (Grant, 1990; Jokinen & Brown, 2005; Kaufman, Adams, James, & Campbell, 1991; Krauss & Seltzer, 1993).

In terms of adults with intellectual disabilities who live with families, older family caregivers have undergone unique experiences and need to specifically consider the issues of aging; however, these areas have only been specifically focused on by Western literature since late the 1980s (Greenberg, Seltzer, & Greenley, 1993; Heller & Factor, 1988; Heller, Hsieh, & Rowitz, 1997; Hong, Seltzer, & Krauss, 2001; Seltzer & Krauss, 1989; Smith, 1996). These family caregivers have traditionally provided lifelong caregiving for the person with intellectual disability; nonetheless, they are often ignored by the formal service systems and are highly likely to be out of touch with the formal support services that are available (Bigby & Ozanne, 2004; Haveman, Berkum, Reijnders, & Heller, 1997; Janicki, McCallion, Force, Bishop, & Lepore, 1998; Walker & Walker, 1998). Hong et al.'s (2001) study compared aging mothers over and below 65 years old and found that younger mothers were more likely to have a larger social support network and to receive more emotional support. In contrast, older family caregivers suffer from the negative aspects of the caring situation, such as being the sole caregiver, living in a smaller household, having a smaller informal support network, and being less optimistic about the progress of their offspring (Smith, Fullmer, & Tobin, 1994; Todd, Shearn, Beyer, & Felce, 1993). However, other research has found that older caregivers seem to experience greater satisfaction with caring and suffer less stress than their younger counterparts (Hayden & Heller, 1997; Seltzer & Krauss, 1989, 1994). Furthermore, in the case of multiple role taking, older caregivers seem to have greater psychological well being than other, nonnormative cases (Hong & Seltzer, 1995). Nonetheless, there has been very little written about differences between age groups among non-Western families who care for an individual with intellectual disability.

The negative impact of having a child with intellectual disability in Taiwan is exacerbated to a great extent by the cultural context (Cheng, 1987; Chou & Palley, 1998; Lin, 1994; Wang, 1994). Among the family, the primary family caregiver, in particular, not only has the long-term stress of caring but needs to be able to cope with the social difficulties that result from people's stares and a feeling of being devalued by society (Chou, 1985). For example, Chinese people are very concerned about the reactions of other people or social expectations, such as “a regard for face” (Ho, 1976); thus, Chinese people often do something because they are expected to, not because they want to (Gabrenya, Wang, & Latane, 1985). In addition, for the Chinese, face is lost through an unsuccessful social performance (Gabrenya et al., 1985; Ho, 1976). If families have a member with intellectual disability and define this as an unsuccessful social performance, the families may interpret this as a stigma and the loss of ancestral face (Chou & Palley, 1998).

Subjective quality of life (QOL) is a common criterion for measuring people's life circumstances. More recently, studies of the subjective QOL of people with intellectual disability have been broadened to include examination of their family caregivers' QOL (Brown, Anand, Fung, Isaacs, & Baum, 2003; Browne & Bramston, 1998; Jokinen & Brown, 2005; Poston et al., 2003). Social support consists of social resources that affect family caregivers, and an adequate social support network has been found to enhance people's well being (Greenberg et al., 1993; Hong et al., 2001). Moreover, socioeconomic and demographic factors may result in different impacts on these older family caregivers when considering the issue of future caregiving plans (Bromley & Blacher, 1991; Heller & Factor, 1988; Kaufman et al., 1991; Krauss & Seltzer, 1993; Sherman, 1988).

The long-term living arrangement of adults with intellectual disability, as mentioned previously, are very much of concern to parents in both Western and Taiwanese society (Chen, 2003; Jokinen & Brown, 2005; Wu, 1994). According to Krauss and Seltzer (1993), more than half of mothers anticipated continued family-based responsibility for the care of their adult child with a disability and only one third viewed residential placement as an option. They also pointed out that long-term care plans seem to be more a function of the context of the mother's life and well being rather than the life of her child with disability (Krauss & Seltzer, 1993). Taiwanese studies (Chen, 2003; Chou, 1996; Wu, 2000) have consistently found that the majority of parents respond that they are reluctant to place their children with intellectual disability in a residential setting; instead, they prefer to keep their child with intellectual disability with them while they are still alive to be assured that their child is cared for properly. The users of residential care services in Taiwan are those persons with intellectual disability from families with a lower level of income compared with their counterparts living with the family (Chen, 1994; Lin, 1992). Related factors in terms of decision making with regard to future caregiving plans included the parental socioeconomic status (SES), accessibility of information, involvement in parental groups, and the parents' perceptions of having a child with intellectual disability (Chen, 2003; Chou, 1996). However, most Taiwanese studies, as discussed above, have either used a qualitative approach (Chou, 1996; Wu, 2000) or used nonrandom samples (Chen, 1994, 2003; Lin, 1992; Wu, 1994); as a result, there are limitations to the generalizability of the conclusions.

Siblings are anticipated as the successors of their parents in future caregiving plans when the parents become no longer able to continue care (Begun, 1989; Dew, Llewellyn, & Balandin, 2004; Freedman, Krauss, & Seltzer, 1997; Krauss, Seltzer, Gordon, & Friedman, 1996; Seltzer, Greenberg, Krauss, Gordon, & Judge, 1997). Related studies (Griffiths & Unger, 1994; Seltzer, Begun, Seltzer, & Krauss, 1991) have reported that one third to almost half of adult siblings of persons with intellectual disability were willing to take up these future caregiving responsibilities if necessary. The significant factors associated with a sibling's willingness to take over the care responsibility included the level of intellectual disability of the sibling (Krauss et al., 1996; Seltzer, Greenberg, Orsmond, & Lounds, 2005), the health of the mother (Krauss et al., 1996; Orsmond & Seltzer, 2000; Seltzer et al., 1991, 2005), family closeness, and the parents' attitudes (Krauss et al., 1996).

Based on the literature review above, Andersen's (1968, 1995) behavior model is applicable in explaining future caregiving plans if they are considered as service alternatives. Under this theoretical model, the predisposing characteristics (demographic, social structure, and health beliefs, such as caregiver age, gender, educational level, marital status, relation to adult with intellectual disability, and perception of having a child with intellectual disability), the enabling resources (personal–family and community, such as family income, caregiver quality of life, family social support, and service use), and the need factors (perceived or evaluated health, such as caregiver health status and level of disability of the adult with intellectual disability) are expected to be associated with attitude toward future caregiving plans.

The recipients of welfare disability benefits in Taiwan must go through official registration based on their medical diagnosis, which is assessed by medical doctors using the individual's IQ score and a neurological examination, his/her mental health condition, self-care ability, communication skills, and any maladaptive behavior. A student is required to complete her/his compulsory education at the age of 15 by the Elementary and Secondary Education Act; thus, related governmental surveys differentiate between children and adults at the age of 15 based on the governmental manpower survey (Directorate-General of Budget, Accounting & Statistics, Executive Yuen, Taiwan, R.O.C., 2008). In Taiwan, just like other societies (Braddock, Emerson, Felce, & Stancliffe, 2001; Haveman et al., 1997), the majority of people with intellectual disability live with their families, including the adults. Based on Taiwan's national annual statistical data (Department of Statistics, Ministry of Interior, Taiwan, R.O.C., 2007), more than 90% of people with intellectual disability live with their families and more than 80% of these people are adults over 15 years. As the caregiver begins to age, concerns are raised about his/her circumstances, including his/her subjective QOL, level of social support, the perception of having a family member with intellectual disability, and formal service utilization, as well as the options that are available for future caregiving when the caregiver is no longer able to provide care.

The present study is the first that we are aware of to examine differences among older and younger caregivers of adults with intellectual disability in Taiwan and is also one of the first to compare whether there are differences in caregiving planning issues between these two groups. In the present, cross-sectional study, which is drawn from a census survey of family caregivers of adults with intellectual disability, we focused on two research questions. First, we explored the extent to which the subjective QOL (including the physical, psychological, and social relationships and their environment), the level of social support, the perception of having a family member with intellectual disability, service utilization, and future plans for caregiving of adults with intellectual disability differed between the younger and older groups of caregivers. Second, we examined the extent to which the future caregiving plans of the younger and older caregivers were associated with their predisposing characteristics, enabling resources, and need factors.

Method

Participants

The study population included all 1,009 primary family caregivers listed by Hsinchu city government who were caring for adults (i.e., at least 15 years old) with intellectual disability who were living with their family. Before the survey was delivered, an invitation letter was sent to all the study population. After obtaining informed consent, primary family caregivers were enrolled in the study and interviewing took place at their homes. In the end, 787 (78.0%) primary family caregivers took part and completed the study interview from June to October 2004 (Chou, Lin, Chang, & Schalock, 2007). We divided the sample into two age groups: those aged 55 years and older and those younger than 55 years. As shown in Table 1, the age of the 315 older family caregivers ranged from 55 years to 86 years (M  =  66.8 years, SD  =  8.1), whereas the age of the 472 younger family caregivers ranged from 16 years to 54 years (M  =  43.3, SD  =  8.9). The older family caregivers included more individuals who were parents of the adult with intellectual disability (p < .001); they also were more likely to be single (p < .01), be male (p < .001), have poorer health (p < .001), have a lower level of education (p < .001), and have a lower family income (p < .001). The two age groups also differed with respect to the adults' age (p < .001) and the severity of the disability of the adults with intellectual disabilities (p < .001).

Table 1.

Comparisons of Older and Younger Caregivers in Terms of Socioeconomic and Demographic Variables

Comparisons of Older and Younger Caregivers in Terms of Socioeconomic and Demographic Variables
Comparisons of Older and Younger Caregivers in Terms of Socioeconomic and Demographic Variables

Measures

Independent variables

Predisposing, enabling, and needs variables made up the 11 independent variables (see Table 3).

Table 3.

Correlation Matrix of Independent Variables Among Family Caregivers of Adults With Intellectual Disability (N  =  787)

Correlation Matrix of Independent Variables Among Family Caregivers of Adults With Intellectual Disability (N  =  787)
Correlation Matrix of Independent Variables Among Family Caregivers of Adults With Intellectual Disability (N  =  787)

Caregiver's gender, marital status, and relation to the adult with intellectual disability were nominal variables. Caregiver's education was divided into six ordinal categories; a higher score indicate a higher education level. Caregiver's perception of having a family member with intellectual disability was tested by the Family Explanation Scale (FES; Chou, 1992). How the family caregivers described having a family member with intellectual disability was represented by five categories: (a) punishment due to nonvirtuous ancestors, (b) God's punishment because of a family fault, (c) own family heredity, (d) the spouse's family heredity, and (e) self-fault. The FES included responses to the five items based on the five categories mentioned above indicating agreement or disagreement and were rated from 1 (strongly disagree) to 5 (strongly agree). Family caregivers having a higher score meant they had a more strong negative perceptions of the causes of having a family member with intellectual disability. The alpha reliability was .67 in this study.

Four variables made up the enabling resources: family income, informal and formal support, quality of life, and services used. Family income, coded by five ordinal categories, indicates the total amount of income of all the family members in the household per month. A higher score indicates a higher family income.

The family caregiver's levels of informal and formal support were measured using the Family Support Scale (FSS; Dunst, Jenkins, & Trivette, 1984), which has been translated into Chinese. The Likert-type scale contains 18 items, and each item's score ranges from 0 (never) to 3 (very helpful). Informal social support includes spouses, parents, other children, friends, and neighbors, and formal social support means help from professionals within related formal systems. The internal reliability of the FSS yielded a Cronbach's alpha of .88 for the present study.

Caregiver's QOL was assessed using the World Health Organization Quality of Life Instrument—Abbreviated version (WHOQOL-BREF; World Health Organization, 2004), Taiwan version, which contains 28 items and four domains: physical, psychological, social relationships, and environment (Yao, Chung, Yu, & Wang, 2002). For the questionnaire as a whole, a 5-point Likert scale was used; the total possible score ranges from 28 to 140. The scale assesses how the caregiver feels about her/his QOL over the last 2 weeks. A higher score indicates a better QOL. Two items were added to the Chinese version and placed in the social relationships and environment domains of this WHOQOL-BREF, Taiwan version. The two questions ask, in Chinese, “How do you feel about saving face and being respected?” and “Do you get enough of the type of foods that you like to eat?” The internal reliability of the WHOQOL-BREF, Taiwan version, yielded a Cronbach's alpha of .93 for the 28 items and had a range from .69 to .83 at the domain level for this study (see Chou et al., 2007).

Questions related to service use were posed that asked the participants to indicate whether they knew of and/or had ever used social services, meaning the in-kind services such as the day care, in-home services, and vocational services provided by Hsinchu city government. The questions for each service were asked separately because the various services are provided by the local government individually. Day care services are only available for families whose family member with a disability does not undergo out-of-home placement. Respite care and home care services in Hsinchu are both provided at the users' homes; therefore, we defined respite and home care as part of the category in-home services. Vocational services included sheltered workshops, on-the-job supervision, and occupational training. These social services were each coded 1 if the participant had ever used that service or 0 if not. If the participant had ever used either respite or home care, we coded this as a yes in the in-home services category. If the participant had ever used any type of vocational services (sheltered workshop, on-the-job supervision, occupational training), the vocational services category was coded yes. If the participant had ever used day care, in-home, or vocational services, we coded service use as a yes in the regression analysis (as shown in Table 3).

The adult's severity of disability (ranging from 1 [mild] to 4 [profound]) and the caregiver's health status (ranging from 1 [very poor] to 5 [very good]) were measured ordinally.

Dependent variables

The dependent variable in this study was the caregiver's future caregiving planning. The questions related to the caregiver's future care arrangements for the adult with intellectual disability were designed by a team composed of the researchers of the present study and senior practitioners. The question consisted of “One day when you are not able to care for him/her (the adult family member with intellectual disability), what are your future care arrangements for him/her.” The available responses were “keep caring until not able to,” “hand over to a sibling of the adult with intellectual disability,” “place in a residential setting,” “have thought about it but no idea so far,” or “have never thought about it.” In the regression analysis, we combined the latter two options (“have thought about it but no idea so far” and “have never thought about it”) to “have no plan yet.”

Data Analysis

The data set was analyzed using the Statistical Package for Social Sciences (SPSS), Version 15.0. We used t tests and chi-square tests to examine whether there were differences in the variables between the older and younger caregivers. To examine the factors associated with the various future caregiving plans, a logistic regression analysis was conducted independently for the two groups. To prevent multicollinearity, we conducted correlation analyses between the 11 independent variables of the future caregiving plans. Based on the correlation matrix, as shown in Table 3, we then removed the caregiver's overall QOL and the caregiver's education from the regression model because these two variables were found to be highly related to other variables. The level of statistical significance was set at .05.

Results

As shown in Table 2, the two groups differed in four measures, namely the caregiver's QOL (including overall QOL, p < .001, and the four QOL domains), family social support (including formal and informal support, p < .001), perception of intellectual disability (p < .001), and future caregiving plans (p < .01). No significant differences were found with respect to social service use.

Table 2.

Comparisons of Older and Younger Caregivers in Terms of QOL, Social Support, Perception of Intellectual Disability, Service Use, and Future Caregiving Plan

Comparisons of Older and Younger Caregivers in Terms of QOL, Social Support, Perception of Intellectual Disability, Service Use, and Future Caregiving Plan
Comparisons of Older and Younger Caregivers in Terms of QOL, Social Support, Perception of Intellectual Disability, Service Use, and Future Caregiving Plan

Table 4 presents the results of the logistic regression analysis of the four possibilities for future caregiving plan for the adults with intellectual disability. Family social support was negatively and significantly associated with the plan “keep caring until not able to” among the older caregivers (p < .05). In contrast, family social support was positively associated with the same plan among the younger caregivers (p < .05).

Table 4.

Logistic Regression Analysis of Future Caregiving Plans Among Older Caregivers (G1) and Young Ones (G2)

Logistic Regression Analysis of Future Caregiving Plans Among Older Caregivers (G1) and Young Ones (G2)
Logistic Regression Analysis of Future Caregiving Plans Among Older Caregivers (G1) and Young Ones (G2)

The caregiver's plan to have the adult cared by his/her sibling was positively associated with single marital status (p < .05) and the caregiver's family income, family social support, and adult's severity of disability (p < .05) among older caregivers. This plan were positively associated with family income (p < .01) and family social support (p < .01) among younger caregivers. Among older caregivers, the plan involving the adult's out-of-home placement was associated with the relation between the caregiver and the adult, namely siblingship (p < .05). This plan was positively associated with the severity of the adult's disability (p < .05) and negatively associated with caregiver's reported health (p < .001) among the younger group.

Three variables, namely being a female caregiver (p < .05), being related to the adult but not as parent or a sibling (p < .05), and the adult having less severe disability (p < .05), were associated with older caregivers who “had no plan yet” about the adult's future care plan. Five variables, namely the caregiver being related to the adult as a sibling (p < .001), the caregiver being related but other than as a parent or a sibling (p < .05), caregivers with a lower level of family social support (p < .001), an adult with less severe disability (p < .05), and a caregiver with a higher level of health (p < .01), were related to this plan among younger caregivers.

Based on Table 4, which shows a comparison between the two groups, the enabling variables (e.g., family social support) were found to be significantly associated with the future care plan “keep caring until not able to” in both groups but with a different direction. “Hand over to sibling” was determined by predisposing, enabling, and need factors among the older caregivers; in contrast, only enabling predictors were related to this choice among the younger group, but this showed a stronger association. “Place in a residential setting” was influenced by predisposing factors among older caregivers but was affected by need factors among their younger counterparts. For the younger caregivers, “have no plan yet” was determined by predisposing, enabling, and need factors, whereas only predisposing and need factors were significantly associated with this option among their older counterparts.

Discussion

The participants' predisposing characteristics, enabling resources, and need factors implied that the aging primary family caregivers were facing a double disadvantage of taking care of older adults with intellectual disability and taking care of those that needed more intensive care compared with younger family caregivers. One possibility is that the life expectancy of individuals with intellectual disability has increased, and, as a result, their family caregivers are having their caring role extended (Heller & Factor, 1988; Hong & Seltzer, 1995) as well as becoming more demanding (Haveman et al., 1997). Meanwhile, the current results suggest that as a person with intellectual disability ages, she or he stays in the family home with the aging parents, who may have lower SES and poorer health. Surprisingly, we also found that there were significant difference between the older and younger caregivers with respect to their relation to adults with intellectual disability and the caregiver's gender. This suggests that many more adults were cared for by parents and there were more male family caregivers among the older caregiver group than the younger group (p < .001). This, in turn, implies that parents of adults with intellectual disability are more likely to take on the role of the adults' lifelong caregivers than other relatives. Furthermore, whereas the adults with intellectual disability with two parents were more likely to be cared for by their mothers, in the single-parent situation, the father had to take on the caregiving role.

The present results are consistent with previous studies (Haveman et al., 1997; Hong et al., 2001; Krauss & Seltzer, 1993), not only in identifying that parents of older individuals are more likely to have a lower educational level, have poor health, and be more likely to be a single parent but that they are more likely to have a lower level of QOL and lower social support. Furthermore, consistent with the findings of Western studies (Grant, 1990; Haveman et al., 1997; Hong et al., 2001), the results imply that older caregivers who are isolated from formal support are also more likely to lose many of their connections with informal networks (Smith et al., 1994).

According to Table 2, the findings of the present study are inconsistent with Haveman et al.'s findings (1997) but are consistent with Krauss and Seltzer's (1993) study and other Taiwanese studies (Chen, 2003; Chou, 1996; Wu, 2000), in that the majority (over 80%) of both young and old family caregivers did not see out-of-home placement as an alternative to family caregiving in their future caregiving planning. Instead, they preferred to continue caring for the adult with disabilities themselves for as long as possible. Furthermore, the older caregivers compared with the younger ones showed a very similar pattern of caring with very few services being used. Nearly 70% of the primary caregivers of adults with intellectual disability reported not using any type of social services. This might be because the community services were largely unavailable, but another possibility is that these family caregivers learned to cope without the use of formal services. For example, the majority of caregivers in both groups stated that their future caregiving plan was to maintain self-caregiving until they were not able to do so (25% of the older caregivers and 20% of the younger ones), particularly for the older caregivers' group, or they would seek an informal substitute, such as a sibling of the adults with intellectual disability (20% of the older caregivers and 19% of the younger ones), rather than seek to enter the formal system. As discussed earlier, it is also important to note that the findings of the present study showed that older caregivers had less informal support than younger caregivers. This resulted in a conflict situation for the older caregivers; specifically, they were losing their informal network support but they were likely to need to seek informal support in the future. The issue as to whether these older caregivers are less practical about the future needs to be of concern and subject to future study. Moreover, as shown in Table 4, among the older caregiver group, when the caregivers were the siblings of the adults with intellectual disability, they were more likely to use residential services as the future care arrangement compared with parents as the caregivers. This is similar to the Western literature, where it has been mentioned that the siblings of adults with intellectual disability have their own ideas about their future role when parents are no longer able to provide care (Jokinen & Brown, 2005; Krauss et al., 1996; Seltzer, Greenberg, Krauss, Gordon, & Judge, 1997).

Based on Table 4, the variables that were significantly related to future care planning in terms of “keep caring until not able to” and “hand over to sibling” contrasted among the older caregivers. For example, the former caregiving plan was significantly related to having no strong family social support, whereas the latter plan was significantly related to having no spouse and having a higher level of family income, a higher level of family social support, and a higher level of the adult's disability. This implies that these two groups among the older caregivers have different predisposing characteristics, enabling resources, and need factors. However, it would seem that for these older caregivers, regardless of the levels of their predisposing, enabling, and need in terms of background, they still prefer to count on either themselves or their own informal support systems. For younger caregivers, both of the future care plans, “keep caring until not able to” and “hand over to sibling,” were significantly related to a higher level of social support. In addition, the plan to hand over to a sibling was related to a higher level of economic background, that is family income, among the younger group, and this is very similar to the results from the older caregivers, which was discussed previously. The findings among the two groups in general were also consistent with Western studies (Krauss & Seltzer, 1993; Krauss et al., 1996; Orsmond & Seltzer, 2000), which indicated that the planned use of siblings as the anticipated successor caregiver in the future caregiving plan is significantly associated with the family caregiver's age, the family closeness (which was represented by family social support in this study), and family income.

The factors associated with younger caregivers who planned to arrange out-of-home placement for adults with intellectual disabilities were consistent with previous studies (Bromely & Blacher, 1991; Heller & Factor, 1988; Sherman, 1988). This suggests that need factors, namely the caregiver's health and the adult's care demands, are significantly associated with the use of out-of-home residential services among younger caregivers. Surprisingly, this study also found that the situation among the younger caregivers cannot be generalized to the older group.

Furthermore, it is noteworthy to mention that around 20% to 30% of the caregivers in both groups had never given any thought to their future caregiving plans (Table 2). This is consistent with Western findings, where it has been found that many older families of adults with intellectual disabilities are reluctant planners (Roberto, 1993). In addition, consistent with the findings of Seltzer et al. (1991), younger caregivers in the present study were less likely to make future plans and are more likely to seek an out-of-home residential arrangement for the adults with intellectual disabilities. Based on the significant factors associated with the caregiving plans, as analyzed as above, this is particularly true for older caregivers of adults with intellectual disabilities who have less disability, who are female, and who are not parents–siblings of the adults with intellectual disabilities (see Table 4). The current findings also suggest that the younger caregivers who are reluctant to set future caregiving plans are those who are not the parents of adults and who do not feel they need to make such plans; that is, they are healthier and have a lower level of caregiving burden due to the adult having a lower level of disability. Last, in this context, these younger caregivers are those who have limited family social support thereby reducing their ability to plan ahead.

In general, the present study showed that the difference in factors associated with future caregiving plans between the two groups were potentially related to the age difference between the two groups and that the younger caregivers were not old enough to think about their future caregiving arrangements for the adults with intellectual disability. This suggests that predisposing factors such as age are variables that cannot be ignored in relation to primary caregivers' future care plans. Surprisingly, this study also found that differences in enabling resources, such as social support and family income, were critical factors associated with the caregivers' future care plans, particularly for those caregivers who counted on themselves or would like to hand over responsibility to a sibling of the adult with intellectual disability. In contrast, the other options such as the use of residential services and “have no plan yet” among caregivers were more likely to be determined by need factors. In addition, the results of this study showed that the decision on the future caregiving plan made by these family caregivers was multidimensional and associated with the caregivers' predisposing characteristics, enabling resources, and need factors.

Implications

The results of this study provide evidence that the most disadvantaged caregiver group is the one made up of caregivers who are old, have a lower level of social status, have a lower health status, and have a lower level of social support. Notwithstanding these factors, this group of older family primary caregivers of adults with intellectual disabilities is still counting on themselves for their future care plans, and this is particularly determined by their enabling resources. We recommend that service providers should help these family caregivers obtain resources and plan ahead for the care of adults with intellectual disabilities. Practitioners need to be aware of the influence of the caregivers' social support networks (including the involvement of siblings in the care of adults with intellectual disabilities), of their quality of life, of their care demands, and of their health status; in addition, they need to recognize the effects these have seem to vary depending on the caregiver's age. As Krauss and Seltzer (1993) indicated, it is more logical to argue that limited enabling resources determine these lifelong caregivers' course of action rather than try and explain in another way the current evidence showing caregivers' self-selection of continued family-based responsibility for the care of the family members with intellectual disability. In addition, future Taiwanese studies need to explore the siblings' capability and their interest in being involved as next generation of caregivers.

Limitations

There are several limitations to this study. First, the design was cross-sectional and, therefore, cannot reveal cause and effect relationships; thus, the results cannot show the direction of any association between the predictive predisposing, enabling, and need variables and the dependent variable, the future caregiving plan. A longitudinal study is desirable in the future. Second, the participants in this study were enrolled from just one local government in Taiwan. Although this study was based on a Census survey, generalizing the findings to other counties and cities needs to be done cautiously. Third, we did not obtain data regarding a number of potentially important variables such as the adults' behavioral problems, the siblings' gender, the siblings' involvement, the siblings' closeness to the family, and the family structure (nuclear or extended). These variables may be important predisposing, enabling, and need components that might also be associated with the participants' future caregiving plan. Fourth, as described previously, the five items of the future caregiving planning were developed by the research team and based on the experiences of senior practitioners in Taiwan; thus, there is a lack of a theoretical framework for these five items. The final limitation is the fact that the scale used to measure perception of having a family member with intellectual disabilities was conducted and first used in 1991 (Chou, 1992). Although it has an acceptable alpha reliability (α  =  .67), its construct validity needs to be confirmed in the future.

Acknowledgments

We would like to thank all the individuals who took time to participate in this study. This research was supported by the Hsin-Chu City Government in Taiwan.

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Editor-in-Charge: Marji Erickson Warfield

Authors:

Yueh-Ching Chou, PhD (choucyc@ym.edu.tw), Professor, Institute/Research Center of Health and Welfare Policy, National Yang-Ming University, 155, Li-Nong St., Sec.2, Peitou, Taipei, 112 Taiwan. Yue-Chune Lee, DrPH, Professor, Institute of Health and Welfare Policy, and Research Center of Health and Welfare Policy, College of Medicine, National Yang-Ming University, Taipei, Taiwan. Li-Chan Lin, PhD, Professor, Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan. Teppo Kröger, PhD, Academy Research Fellow, Department of Social Sciences and Philosophy, University of Jyväskylä, Finland. Ai-Ning Chang, MSW, Administrative Worker, Department of Social Affairs, Ministry of Interior, Taiwan.