Five ways in which the caring role can have a negative impact on families, carers, and friends.

Daryl Higgins and Ben Edwards

Índice Show

Supports for the person with a disability and their carer
Carers' relationships
Family functioning
Relationship breakdown

As outlined in Chapter 5, previous research has identified how caring for a family member with a disability can impact on a wide range of dimensions of family functioning and family wellbeing. Good family functioning is an important factor in supporting carers and achieving positive outcomes for the person with a disability and other household members.

Supports for the person with a disability and their carer

Carers were asked a number of questions about the support they or the person with a disability received or could seek from other members of the family and other people. A separate question was asked about their use of services. The main purpose of these questions was to explore the availability of a support network and its impact on caring activities and carers' wellbeing. Previous research has identified the important aspects of carer networks to be the size, composition and activities of its members (Penrod, Kane, Kane, & Finch, 1995). The availability of supports for carers varies, and yet is an important aspect in understanding carer stress and wellbeing, and may influence the ability of the carer to engage in paid employment, or their use of formal care to supplement the informal care they provide.

Supports for the person with a disability

In Figure 6.1, we show the number of people who provided support to the person with a disability in addition to the support provided by the carer, according to the type of task. This support would benefit not only a person with disability but also their carer. Across all four tasks - talking about worries and fears; providing advice; assisting with self-care, mobility and communication; assisting with household tasks - the majority of people with a disability had no person or one person other than the primary carer to assist them. For example, 23.7% had no other person and 43.3% had one other person to talk to about their worries and fears. Similarly, for providing advice, 27.9% had no-one, and 43.2% one person other than the primary carer. Besides the primary carer, 31.9% of the people with a disability had no other person and 40.3% had one other person to assist them with self-care, mobility and communication. Finally, 50.1% had no other person and 36.3% had one person other than the primary carer to assist with household tasks. These data suggest that assistance with household tasks is the area where people with a disability rely to the greatest extent on their primary carer. Therefore, approximately one in two carers were taking sole responsibility for household tasks.

Figure 6.1 People with a disability receiving support from others in addition to the primary carer, by type of support and number of supporters

Source: FCPDS 2006

In Figure 6.2, we show the percentage of carers who received support from none, one, two, three, or more than three people in relation to each task. Carers most commonly received support from one other person (varying between 35.5% and 39.8% across the four tasks). "Advice about caring for the person with a disability" and "talking about worries and fears" were the tasks for which more carers had assistance. Only 14.3% of carers had no-one to assist them with advice; 39.2% had one person, and 46.0% had more than two people to rely on for advice. The task for which carers were most often left with no support was "help with everyday duties", such as going to the shops or doing housework (32.8% had no assistance).

Figure 6.2 Carers receiving support from others, by type of support and number of supporters

Note: There were 5 questions that carers were asked concerning different tasks or domains with which the carer and/or the person with a disability may require help. Four are represented in this figure. The final domain was financial support. As nearly all carers (95.6%) did not receive financial assistance (excluding government support) from any other person, including this in the figure would have made it visually hard to decipher.
Source: FCPDS 2006

Although not shown in Figure 6.2, very few carers had financial support from other people in their network: 95.6% of carers did not receive any financial assistance for caring from other people. Looking at both Figures 7.1 and 7.2, the data show that, on average, the level of support that is provided directly to a person with disability (from people other than the primary carer) is higher than the level of support available to carers. However, carers may still benefit from the support provided directly to a person with disability. When another person cares for a person with a disability or assists with tasks, the primary carer may be able to enjoy some "respite", or feel that the responsibility for caring is shared. However, sometimes assistance from others can bring conflict or disagreements about caring; this is addressed later on in this report (see Figure 6.4).

Figure 6.3 provides a comparison of data from the ABS 2003 Survey of Disability, Ageing and Carers (2004) with data from the FCPDS. Respondents were asked to think about the support they received in providing care for the person(s) with a disability, whether they required more support, or whether the level of support was about right. The two responses ("a lot more support" and "a little more support") were combined to indicate carers who needed more support than they were receiving at the time. These data show that, compared to the ABS survey, carers in the current FCPDS were more likely to indicate that they needed more support. In total, 46.1% of FCPDS carers (compared to 37.2% in the ABS SDAC) needed more support, whereas 53.8% of FCPDS carers (52.4% in the ABS SDAC) indicated they did not need more support. In both studies, more than half of the carers indicated that they did not need more support, it is still a very sizeable group of carers who need either a little or a lot more support, particularly in the FCPDS sample of carers.

FCPDS data were not standardised by age or gender, whereas ABS 2003 SDAC were weighted to reflect the population.

Figure 6.3 Support needs of carers, by estimates from ABS 2003 SDAC and 2006 FCPDS

Note: Percentages do not add to 100% for the ABS 2003 SDAC, as some carers did not answer the question.
Sources: FCPDS 2006; ABS, 2004

As discussed in Chapter 5 and will be discussed in Chapter 7 (where we review previous research concerning mental health, physical health and family functioning), providing care for a family member with a disability can increase the levels of stress and conflict both for the individual primary carer and within the family. One of the ways in which this occurs is when conflict or disagreements arise about specific care issues. Most primary carers did not have disagreements with supporters or other family members: 81.0% of carers had no disagreements with any other person about caring for the person with a disability (see Figure 6.4). Twelve per cent of carers had disagreements with one other supporter or family member, and another 6.7% were having disagreements with two or more other supporters or family members.

Figure 6.4 Disagreements about caring for the person with a disability, by number of supporters

Note: This analysis included carers that had no support on any of the tasks identified in Figure 6.2.
Source: FCPDS 2006

Figure 6.5 Support provided to the carer and person with a disability, by level of cooperation

Note: The responses to this question were limited by the knowledge that the primary carer had about other members of the care network, and the degree to which she or he believed that they cooperated with one another. Given that primary carers have significant time commitments to caring, and are interacting personally with the person with a disability, they would be well-placed to have a view on the levels of cooperation; however, the person with a disability may have a different perspective. It is also possible that primary carers might not be aware of other carers/supporters or the role they play in the provision of assistance to the person with a disability (or may not consider their contribution as "support").
Source: FCPDS 2006

Cooperation between people providing support to the primary carer is an important issue. Around 60% of carers reported that all of the people who provided support for the carer or the person with a disability cooperated with each other. Nearly one in five carers (19.5%) had no-one else with whom to cooperate, while 11.1% reported that none of their support people cooperated. Some level of cooperation was reported by 6.8%. As discussed in Chapter 5, lack of cooperation between primary carers and other family members or supporters is a significant contributor to stress, poor health and wellbeing outcomes for primary carers. This study provides unique data on this issue, highlighting the importance of cooperation and the broader networks of supports for carers.

Primary carers were asked to identify who supports them as carers, as well as who else assists them with provision of care for the person with a disability.32 The majority of primary carers (83.7%) indicated that they (and the person with a disability) had no support or assistance from social groups such as work colleagues or craft groups. The remainder had support from either one (12.6%) or two different sources (3.7%).

In terms of support from people living in the same household, in 54.3% of cases, carers received no support from others within the household, with 31.7% of carers having one supporter, and 10.0% having two supporters. In very few cases (4%), there were more than two other people within the household to support the carer.

Almost one in five carers (16.5%) had no support people outside of the household (see Figure 6.6). Over half (54.5%) of carers had between one and three people to assist them with caring, while 29.0% of carers had four or more people from outside the household to assist them.

Figure 6.6 Support people to the carer from outside the household

Source: FCPDS 2006

In order to examine the total level of support available to carers, Figure 6.7 provides a breakdown of the percentage of carers who have different numbers of supporters for themselves and the person with a disability (ranging from none through to 11). As the shape of the distribution in Figure 6.7 shows, the largest group of carers was those who had three supporters (18.5%), followed by 17.6% with two supporters, and 15.3% with four supporters. Although in absolute numbers the group is relatively small, the 6.4% of carers for whom there were no supporters for themselves or the person for whom they are caring is of concern.

Figure 6.7 Total number of supporters for the carer and person with a disability

Source: FCPDS 2006

Given the gender imbalance in care tasks reported in the literature, we have analysed the available data on supporters according to the gender of the carer. We found a similar pattern in the FCPDS, with 77.5% of carers being female and 22.5% male. As shown in Figure 6.8, the difference in the distribution of supporters for male and female carers is statistically significant. Overall, male carers had fewer supporters than female carers. In particular, a significantly higher proportion of males (12.0%) had no supporters (cf. 4.8% of females). There were also higher proportions of male carers than female carers with one (16.9% cf. 12.6%) or two supporters (20.0% cf. 16.9%). For all categories above two supporters, there were more female carers than males (see Figure 6.8).

Figure 6.8 Number of supporters, by carers' gender

Note: Using chi-square, the difference between male and female carers was statistically significant (χ2 (11) = 28.97, p < .01).
Source: FCPDS 2006

One possible explanation for why male carers have fewer supporters than female carers is that the men may be more likely to be the partner of the person with a disability for whom they are the primary carer. In the FCPDS, male carers are older than female carers (41.8% of males are over 65; cf. 16.1% of female carers; see Chapter 4), and may have no-one in the house on whom to rely. Another possible explanation, based on gender-role socialisation, is that although not traditionally socialised into caring roles, when men do take on this role (perhaps out of necessity, e.g., to care for their ageing and infirm partner), they may lack the skills to seek out emotional or practical supports, and may present a stoic, self-reliant image.

Of all the occupants of the household, the most common groups providing support for the carer or assisting with care for the person with a disability were the carer's husband/wife, son/daughter and partner/de facto (see Table 6.1). Although the largest group of people living in the carers' households were sons and daughters of the primary carer (n = 640), less than half of these (39.7%) assisted with care/support. This was likely to be due to many still being children or adolescents, and having other responsibilities (e.g., school), as well as the care tasks being developmentally inappropriate for a minor. In contrast, nearly all of the carers' co-resident partners also provided support or care: 92.3% of husbands/wives and 93.9% of de facto partners.

Relationship to carer	Number in household	% who assist with care
Husband or wife
Partner or de facto
Son or daughter
Stepson or stepdaughter
Partner's son or daughter
Parent
Parent-in-law
Grandparent
Grandchild
Sibling
Uncle or aunt
Friend
Flatmate or boarder
Other relative
Totals

Note: Tests of statistical significance were not conducted due to very small numbers in some cells. Caution should be taken when interpreting the proportion of particular groups of household members, where the numbers are small (i.e., less than 50). This table excludes the person(s) with a disability - it only refers to other household members.
Source: FCPDS 2006

To examine more closely where supports for carers are coming from, the data presented earlier in Figure 6.8 are now examined separately according to whether the support comes from within or outside the household, or whether it comes from the carer's participation in a social group. As shown in Table 6.2, there were more males who had no household supporters (78.7%) compared to females (47.2%). The gender difference for supporters from within the household and social groups were both statistically significant, with male carers having fewer supporters than female carers. However, males and female carers had similar numbers of outside supporters.

Number of supporters	Individual supporters from within the household	Individual supporters from outside the household	Support from social groups
Male carers (%)	Female carers (%)	Male carers (%)	Female carers (%)	Male carers (%)	Female carers (%)
0
1
2
3
4
5
6
7
Total
Number of observations

Note: Percentages may not total 100% due to rounding. A greater proportion of female carers had more supporters who came from within the household (χ2 (6) = 71.92, p < .001) and social groups (χ2 (2) = 6.92, p < .05) than male carers. The number of supporters from outside the household was not statistically different between male and female carers (χ2 (7) = 5.09, p > .05).
Source: FCPDS 2006

In addition to the data presented in Tables 7.1 and 7.2, we analysed separately the number of supporters from within the household, outside the household, and from a social group. Looking at all supporters from within the household (n = 1,133), we investigated who was more likely to provide support to the primary carer. Sons and daughters of the primary carer were the largest group (56.5%), followed by husbands or wives (27.6%). Grandchildren and parents comprised 3% or less of the support people. In terms of the number of supporters from outside the household (n = 2,455), friends were the largest group (comprising 33.5% of supporters from outside the household), followed by sons and daughters (25.7%), other outside people (14.6%), parents (11.2%), parents-in-law (4.5%), and friends of the person with a disability (3.8%). Many of the supporters were not residing within the household, including the carers' children, parents and friends. Of the total number of supporters both within and outside the household (n = 3,588), sons and daughters were the largest group (35.4%), followed by friends (23.2%) and other outside persons (10.0%). Husbands and wives accounted for 8.7% of total supporters, parents comprised 8.4%, and 3.2% were parents-in-law. Other groups (stepson or stepdaughter, grandchild, neighbour, other relative, partner or de facto, uncle or aunt, sibling, other provider of support services, partners' son or daughter, grandparent, flatmate or boarder, general practitioner) each comprised less than 2% of supporters from within and outside the household and, in total, amounted to 8.4% of all supporters (resident and non-resident combined).

One limitation of these analyses is that we do not distinguish between support provided to the carer (e.g., emotional support) and the assistance with care that is provided directly to the person with a disability. In addition, the number of supporters may not equate to the total amount of support provided. Different supporters may provide different amounts of support (e.g., 1 hour per month cf. 2 days per week). We have collected data on this issue in FCPDS, which will be explored further in the future. Also, the provision of support may not equate to the perceived value of the supportive behaviour to the carer (that is, their satisfaction with the type and level of support), which is an issue that needs to be addressed in order to understand the complexity of supports available to carers and their impact.

Carers' relationships

In the Families Caring for a Person with a Disability Study, we asked two sets of questions about family relationships. First, carers were asked about their satisfaction with their relationship with: their partner, the person(s) with a disability, and their children. They were also asked to rate how satisfied they were with their partner's relationship with their children, and how well children in the household get along with each other. Each item was rated on a scale from 0 (completely dissatisfied) through to 10 (completely satisfied). Second, carers were asked to what extent they agreed at the time with five statements used to describe the family dynamics of the whole family.

In Figure 6.9, we present data on a measure of relationship satisfaction. Data were compared for three groups: carers' relationship satisfaction with people when that person is not the person with a disability, relationship satisfaction with people who have a disability (and for whom they provide care), and comparative data from non-carers from the general population.33 Estimates of statistically significant results were calculated with a 95% level of confidence. The confidence intervals are displayed in Figure 6.9 by means of vertical confidence interval bars. Non-overlapping confidence intervals on two columns in a figure suggest that we can be 95% confident that the two values represented in the columns are significantly different. Carers in the FCPDS tended to be older and the ratio of females to males was higher than in the general population in the HILDA survey. In order that differences are not attributable to these characteristics, responses for FCPDS carers were weighted by age and gender to reflect the general population.

Figure 6.9 Satisfaction with relationship with and between family members, by relationship and caring status

Note: Both HILDA general population data and FCPDS data on carers have been weighted by gender and age. Carers' relationship satisfaction is presented separately for relationships with family members when that person is the person with a disability, and for family members who are not the person with a disability.
Sources: FCPDS 2006; HILDA Wave 4.1

Different trends emerge depending on the type of relationship under examination. In relation to partners, respondents in the FCPDS reported significantly higher satisfaction than adults in the HILDA survey. There was no statistically significant difference between FCPDS carers' satisfaction with partners who were the person with a disability for whom they were caring and those partners that did not have a disability. However, one of the limitations with conducting a cross-sectional survey and examining relationship satisfaction with partners with a disability is that estimates are based on surviving relationships only. When a partner is being cared for and there is a relationship separation, the carer will usually cease to provide care, and therefore no longer be eligible for Carer Payment and/or Carer Allowance.34 Consequently, the relationship satisfaction of partners with a disability measured in this study is an overestimate of the level of relationship satisfaction with partners with a disability.

Regarding satisfaction with relationships with their children, carers in the FCPDS study whose child was the person with a disability for whom they are the primary carer reported significantly greater satisfaction than non-carer parents from the general population. However, carers reported even greater satisfaction with their relationship with children who were not the person with a disability for whom they are the primary carer. So although carers' satisfaction with their relationships with children was better overall than comparative data with non-carers, the task of caring for a child with a disability is associated with poorer relationship satisfaction with children (see Figure 6.9).

Carers were also asked to report on the degree to which they were satisfied with the quality of the relationship between their partner and their children. Carers in FCPDS reported significantly better relationships between partners and children than comparable non-carers (HILDA), and there was no significant difference in relationship satisfaction between carers' partners and children with a disability and children who are not. A different pattern of results emerged for sibling relationships. Carers reported significantly lower satisfaction with relationships between siblings ("children getting on") when the child is the person with a disability, compared to when the child is not the person with a disability, or compared to the general population (see Figure 6.9).

Family functioning

Figure 6.10 shows the percentage of FCPDS carers endorsing each of the four response categories (strongly agree, agree, disagree, strongly disagree) for the five items measuring different dimensions of family functioning that have been identified in the literature as being relevant to the impact on families of caring for a person with a disability: cohesion, communication, resilience, adaptability and conflict.

Figure 6.10 Family functioning of carers, by statements of family functioning and level of agreement

Source: FCPDS 2006

In relation to the first item, measuring family cohesion (togetherness), most carers either agreed or strongly agreed (87.1%), with most strongly agreeing (54.4%), that there was a feeling of togetherness in the family. Most carers agreed or strongly agreed that they talked about their personal problems and helped each other deal with them. Similarly, most carers also strongly agreed or agreed that their family coped with and recovered from times of hardship. The pattern was a little weaker for the item measuring adaptability (trying new ways of solving problems), with 79.9% agreeing or strongly agreeing. For the item measuring conflict, 63.8% disagreed or strongly disagreed that there was a lot of tension in the family. This still left a substantial minority of carers who either agreed (22.3%) or strongly agreed (10.6%) that there was tension in their families. This suggests that, of all the aspects of family functioning, providing ways to strengthen the abilities of families caring for a person with a disability to cope with - and indeed lower - the level of conflict and tension would be one of the most important aspects to address.

The relationship between family problems and the type of disability and level of care needs was also examined. For these analyses, we considered "family problems" to be where carers indicated they "disagreed" or "strongly disagreed" with that item (except for the conflict item, which is negatively worded, so we looked at where carers "agreed" or "strongly agreed" in that case). In both cases, where carers were caring for more than one person with a disability, we only examined the type of disability and level of care needs for the first person they identified in the interview.

There were more problems in family functioning for families that cared for a person with a psychiatric disability than the other families caring for a person with another disabling condition (χ2 (6) = 20.61, p < .01).

Figure 6.11 provides a description of the number of family problems that carers reported, according to the type of disability of the person for whom they are providing care. Carers of someone with a physical disability were the most likely to report no family problems, followed by carers of someone with an intellectual/learning disability or multiple disabilities. Finally, those caring for someone with a psychiatric disability were the least likely to have reported no family functioning problems, and were the most likely to have one problem. Interestingly, there were no differences between the groups in the proportion reporting two or more problems. It seems that the type of disability of the person being cared for is associated with whether the family either has no or one family problem, but is not significantly related to whether or not they have two or more problems.

Figure 6.11 Families with problems of family functioning, by type of disability and number of problems

Notes: Where carers were providing care for more than one person with a disability, responses were coded according to the type of disability of the first person that carers identified. The particular dimension of family functioning was coded as a "problem" when carers either "disagreed" or "strongly disagreed" with positive items (and vice versa for the negative item: "a lot of tension in the family").
Source: FCPDS 2006

In Figure 6.12, we considered the number of family problems as a function of the level of care needs. Using the carers' responses to a range of questions about the types of tasks with which the person requires assistance, their level of care was categorised as low, medium or high. We found a statistically significant association between the level of care needs and the number of family problems. Those who were caring for a person with a disability who had the lowest level of care needs had the fewest family problems, while high care needs were more likely to have one, two or more family problems. This shows a statistically significant relationship between the level of care needs that the person with a disability has (and, consequently, the burden on the carer), and the problems experienced by the broader family, not just by the carer.

Figure 6.12 Families with problems of family functioning, by level of care needs and number of problems

Note: Where carers were providing care for more than one person with a disability, responses were coded according to the type of disability of the first person that carers identified. The particular dimension was coded as problematic when carers either "disagreed" or "strongly disagreed" with positive items (and vice versa for the negative item). Based on the level of care needs of the person for whom they were caring, differences between carers in the number of family dimensions that were problematic were statistically significant (χ2 (4) = 40.85, p < .001).
Source: FCPDS 2006

Relationship breakdown

We asked carers about their current relationship status, as well as their relationship experiences since they started caring. One of the limitations with conducting a cross-sectional survey and examining relationship experiences such as separation is that our estimates are open to a selection bias for carers of a partner with a disability. More specifically, when a partner is being cared for and there is a relationship separation, the carer will usually cease to provide care, and therefore no longer be eligible for Carer Payment and/or Carer Allowance. Consequently, it is possible that by including carers of partners we have underestimated the rate of relationship separation. An examination of the rates of separation in the FCPDS confirms the selection bias, with a 1.2%35 separation rate for carers of partners, compared to a separation rate of 28.0%36 for carers of a person with a disability who was not their partner.

To overcome this selection bias, we restricted the sample to carers of a person with a disability who was not a partner. We acknowledge that our examination of relationship experiences is limited by such an approach; however, it would be inappropriate to draw any inferences about the relationship separation of carers whose partner is the person with disability with the FCPDS data.37 As stated previously, we found that 28.0% of carers had separated from their partners since they started caring for the family member that was not a partner. Including those who were partnered and separated before and since caring, 18.1% of carers had reconciled with their partner since they commenced caring. Of carers who had a partner at any time since they started caring, 57.6% reported a significant increase in arguments.

As shown in Figure 6.13, 30% or more female carers aged 31 to 40 and 41 to 50 years had separated since they started caring. In contrast, less than 15% of carers 51 years of age or older had separated since they began caring. For younger carers, the progression into a caregiving role may be abrupt or unexpected and may place additional stress on the carer - including the risk of relationship difficulties and separation. Due to their smaller numbers when divided by age categories, male carers were excluded from this analysis.

Figure 6.13 Relationship separation of female carers, by age group

Note: Female carers of a person with a disability who was not their partner (n = 396). Although there was a very high rate of separation for carers aged 18 to 30 (55.6%), this should be regarded with caution, due to the small sample size (n = 18); however, the other rates were robust.
Source: FCPDS 2006

As shown in Table 6.3, approximately three-quarters of those who had separated since commencing care reported a significant increase in arguments. However, even for those who were partnered and did not separate, 51.6% reported at least one or more periods in their relationship when there was a significantly higher level of arguments.

Arguments since started caring	No increase in arguments	Significant increase in arguments	Total number
Partnered and not separated
Separated since started caring
Total ever-partnered carers