The nature and impact of caring for family members with a disability in Australia

Research Report No. 16 – June 2008

5. Literature review

Daryl Higgins and Ben Edwards

According to Pakenham (1998), "illnesses disrupt family dynamics, which then require a reorganization of effort" (p. 269). To understand the experiences of carers of people with disability, the broader context of the family and social environment in which the care takes place needs to be considered. These contextual factors include family relationships, marital relationships and support networks. The first section of this chapter focuses on family relationship issues, family coping, positive aspects of caring for family relationships and specific family relationship issues for families caring for people with particular types of disabling conditions. The literature on relationship separation in the context of caring for a person with a disability is then reviewed. Finally, the support networks of families caring for a person with a disability are examined.

The dimensions of family functioning

In the context of caring for a person with a disability, family functioning is of relevance because: (a) it influences the availability of emotional support for the person with a disability by buffering the stresses that families experience; and (b) it is related to the availability of direct care for the person with a disability (Mitrani et al., 2006). It is also dynamic, and changes over time in response to new demands. As Highet, McNair, Davenport, and Hickie (2004) noted:

the quality of such an environment may change progressively in response to illness-related factors, which include the chronicity of illness and its impact on social, economic and interpersonal functioning, as well as other adverse interactions with healthcare, social welfare services, and the employment and insurance industries. (p. S6)

Many dimensions of family functioning have been studied, and the research indicates that caring for a family member who has or develops a disability can have an impact. Table 5.1 documents the dimensions of family functioning that have been examined and provides a brief summary of findings from a selection of research studies.

Table 5.1 Dimensions of family functioning and the impact of caring for a person with a disability
Dimension of family functioning Definition Selected research on the impact of caring for a person with a disability
Adaptability The family's ability to change its rules, roles and power structure in response to situational and developmental stress (Olson, Sprenkle, & Russell, 1979).High levels of adaptability represent "flexibility", and low levels represent "rigidity". Families where a member has a disability are more rigid (Martin & Cole, 1993).Poor family adaptability was the most powerful predictor of carer depression (Deimling, Smerglia, & Schaefer, 2001).Parents of a child with an autism spectrum disorder had lower adaptability than population norms (Higgins et al., 2005).
Cohesion The emotional bonding that exists between family members (sense of "togetherness" and interconnection); provision of help and support (Olson & Tiesel, 1991).Low cohesion is seen as dysfunctional. Parents of a child with an autism spectrum disorder had lower cohesion than population norms (Higgins et al., 2005).Parents of children with ADHD reported more problems with expressiveness (Pressman et al., 2006).
Marital relationship satisfaction The degree of closeness or the quality of the partner dyad; the happiness or satisfaction with marital relationship (Higgins et al., 2005). Primary care providers of children with autism spectrum disorder reported lower marital satisfaction than population norms (Higgins et al., 2005).Parents caring for a child with a disability have an increased risk of separation/divorce (Risdal & Singer, 2004)
Role change Refers to both instrumental and affective roles."Parentification" of children (assuming care responsibilities for parents).Changes in roles, such as adult children taking on the role of caring for parents. Bull (1998) found a range of dementia-related family loss and grief experienced by carers (e.g., loss of the "person", sharing, contact, family unit, way of life, family role) that were related to change of roles.Role reversal in women caring for an elderly parent leads to conflict and role confusion (Murphy, 2000).
Parent-child relationship satisfaction The degree of closeness or the quality of the relationship between children and parents.Often measured on a continuum from warmth through to hostility. Caring for a person with a disability may influence both the relationship with the person with a disability, and relationships with any other siblings.Mothers of children with autism reported a closer relationship with their child than mothers of children with similar levels of social skills but not diagnosed with autism (Montes & Halterman, 2007).
Conflict Openly expressed anger and aggression (Moos & Moos, 1986) Parents of children with ADHD reported higher family conflict, accounting for 40% of similarity between ADHD-affected sibling pairs (Pressman et al., 2006).In a Japanese study of breast cancer patients and their families, Ozone et al. (2005) found that "conflictive" families - characterised by low cohesion, low expressiveness and high conflict - had the highest levels of depression and anxiety. These findings were similar to those reported by Kissane, Bloch, Burns, McKenzie, and Posterino (1994).
Communication Verbal exchanges of information within the family; the ability to speak and listen to each other (Olson, 1993).Includes elements such as openness, sharing feelings, expressiveness, affective responsiveness and involvement, one-sided communication.Dysfunctional communication is masked or indirect (Epstein, Bishop, Ryan, Miller, & Keitner, 1993). Poorer family communication is associated with higher levels of distress in breast cancer patients (Hilton, 1994).Direct communication is associated with lower levels of anxiety in families of recently diagnosed cancer patients (Edwards & Clarke, 2004).Parents of children with ADHD reported more problems with expressiveness (Pressman et al., 2006).
Problem-solving and decision-making Instrumental problem-solving (e.g., about basic family tasks such as provision of food).Affective problem-solving (e.g., about emotional issues). Wade, Carey, & Wolfe (2006) showed that "family problem-solving interventions" are beneficial for families of children with acquired brain injury.This is a particularly salient aspect of family functioning in relation to illness or disabilities where families need to respond to new information and concerns, and make decisions about the current and future care of the person with a disability (Wade et al., 2006).

The time and emotional energy involved in caring can significantly influence the dynamics of interactions within the family, often through the reduced availability of the primary carer to spend time with others. Hales (2007) presented Australian data showing that 17% of those providing care to a person with a disability other than their spouse stated that caring had placed a strain on the relationship. An even greater number of carers indicated that their relationships with other co-resident family members were negatively affected (22%). Some of the ways in which caring for a person with a disability influences family functioning are now addressed.

Family functioning in the face of stress

The research evidence seems to suggest a bi-directional relationship between family functioning and stress. For example, Mitrani et al. (2006) found that, as well as contributing directly to stress, family functioning was an important intervening variable that helped explain the relationship between distress (anxiety, depression and perceived health) and the objective burden of care. Higher levels of the objective burden of care were associated with lower levels of family functioning, which in turn were associated with higher levels of anxiety, depression and perceptions of poorer health. Beach et al. (2005) reported that carers with poorer mental and physical health were more likely to provide lower quality care. They also found that having a carer with poor physical and mental health was a significant predictor of elder abuse - most commonly psychological abuse.

The increased time and energy spent caring for a family member with a disability (particularly by a mother, who often assumes the extra care responsibilities) reduces the physical and emotional time (and energy) available to other members of the family, particularly non-disabled siblings (Martin & Cole, 1993). Brothers and sisters of a child with a disability may also be affected in other ways. In addition to reduced care for non-disabled siblings from their parents, children of primary carers may also provide emotional support to the person with a disability and the primary carer. For example, Pruchno, Patrick, and Burant (1996) reported that non-disabled siblings have strong, close emotional ties to their siblings with chronic disabilities, but provide little functional support. Some studies report negative psychosocial consequences for these siblings, but these are usually dependent on the severity of the disabling conditions experienced (siblings of children with autism experience more negative psychosocial outcomes when compared with siblings of children with Down Syndrome) (Cuskelly & Hayes, 2004).

Given the increase in life expectancy of many people with chronic disabilities due to advances in medical care, many siblings also may in the future become the primary carer. In fact, a recent review suggested that the majority of siblings would take or are preparing to take responsibility for the care of their brother or sister with a disability (Cuskelly & Hayes, 2004).

Although there have been studies looking at the impact of caring on carers (e.g., ABS, 2004), currently, no large-scale or population-based studies exist on the impact more broadly on families of caring for a person with a disability (child or adult) in Australia. In order to improve our understanding of this growing part of the Australian community, a large-scale national study of carers and the impact of caring on families is needed.

Coping with a disability

Given that caring for a person with a disability can be stressful, it is important to examine factors that promote family resilience. However, it is first important to consider what is meant by the concept of family resilience. Hawley and De Haan (1996) defined "resilience" - in the context of families - as follows:

Family resilience describes the path a family follows as it adapts and prospers in the face of stress, both in the present and over time. Resilient families positively respond to these conditions in unique ways, depending on the context, developmental level, the interactive combination of risk and protective factors, and the family's shared outlook. (p. 293)

The construct of "adaptability" is particularly relevant to understanding the ways in which a family member having a disability affects families. The birth of a child with a physical disability - or the discovery later on that a child is failing to meet normal developmental milestones - is a recognised stressor for families (Cuskelly & Hayes, 2004). Similar issues are likely to emerge for families who are faced with care responsibilities for adults (e.g., a sibling, an adult child, or a parent who develops a disability, mental illness or other physical condition requiring care). Part of the stress of caring is due to changes in roles, and the need to adapt to the new roles. Therefore, it is important to understand more about how the family adapts (particularly the ability to be flexible in the way individuals perform roles and tasks).

Based on transactional stress and coping theory, when faced with stressors (such as coping with care responsibilities for a family member with a disability), mental health outcomes are influenced by the coping strategies employed. According to Lazarus and Folkman (1984) - the classic theorists in this area - there are two major styles of coping that people employ in response to a stressful event (such as taking on the care responsibility for a family member with a disability): (a) problem-focused coping (that is, actively doing something to reduce the stressor, such as seeking social support, information or services); and/or (b) emotion-focused coping strategies (that is, regulating the emotional consequences of the event, such as "avoidance"). In general, emotion-focused coping strategies are associated with more negative outcomes than problem-focused coping strategies.

Differences in family members' coping styles

At the collective level, the more adaptive coping strategies match those found at the individual level - namely, that problem-focused coping (active behaviours to deal with the problem) are more beneficial than emotion-focused coping (mental and behavioural avoidance strategies) (Pakenham, 1998).

As will be discussed in Chapter 7, the levels of distress reported by care receivers and their partners are correlated. This raises the question of whether there are common coping strategies for couples, reinforcing the need to explore both individual and dyadic coping strategies. Pakenham (1998) found that "greater couple problem-focused coping was related to lower collective global distress" (p. 273). However, what was also important was the match between the coping strategies of each member of the couple. He found that "greater discrepancy between partners' reliance on problem-focused coping was related to lower collective depression" (p. 273). Pakenham's findings suggest that "both coping congruence and average level of couple coping are related to collective and individual adjustment" (p. 275). These findings highlight the complex set of interdependencies that develop between family members in the context of caring for a person with a disability.

Positive effects of caring on family relationships

Many carers also derive positive benefits from their care role (see Hughes, 2007). Parents often talk about the closeness of their relationship to the child with a disability as a positive outcome of caring (Hughes, 2007). For example, analysis of the ABS 2003 SDAC survey showed that 35% of carers stated that caring brought them close together, compared with 18% who said it placed a strain on the relationship, and 42% who identified no change (Hales, 2007). Siblings also develop good relationships with the child with a disability. Cuskelly and Gunn (2002) reported that siblings of a child with a disability reported more positive relationships in these families than in comparison families where there was no sibling with a disabling condition. Similarly, parents of children with an intellectual disability focused on the positive aspects of their lifelong caregiving role, and the positive impact on the quality of their family life (Jokinen & Brown, 2005).

Chronic illness/disability and caring

To highlight the family relationship issues, we draw on research looking at the experiences of those caring for family members with four different groups of families: families caring for a person with cancer or acquired brain injury, and children with a disability or attention deficit hyperactivity disorder.

Cancer

Edwards and Clarke (2004) examined a variety of dimensions of family functioning in relatives and newly diagnosed cancer patients, and their role in influencing depression and anxiety of both patients and family members. It was found, in particular, that poor expressiveness and problem-solving were related to elevated levels of depression. They concluded that "a diagnosis of cancer affects the whole family" (p. 570). As family members are likely to be providing care for the patient, family functioning in providing care for a family member with an illness or disability affects the wellbeing not just of the "patient" or person with a disability, but the broader family, including the carer.

Acquired brain injury

Similarly, Perlesz, Kinsella, and Crowe (2000) showed the broad impact on families of caring for a patient with acquired brain injury. They found that, while primary carers (particularly wives) were at greatest risk for poor psychosocial outcomes, other family members who played a care role also displayed high levels of distress. Mean scores on the measure of dissatisfaction for various aspects of family life were above the mid-point for the person with the brain injury, their primary carer and other carers in the family. In particular, they noted the high level of dissatisfaction reported by other family members (mainly siblings).

Children with a disability

Particular developmental issues are relevant when discussing the impact that caring for a child with a disability has on families. There is general agreement in the literature that parenting a child with a disability is associated with higher levels of stress (Cuskelly & Hayes, 2004). In turn, this stress is likely to impact on relationships and family functioning. For example, researchers have found higher levels of maternal stress, family strain, lower social support, and greater use of avoidant coping strategies associated with parenting a child with autism spectrum disorder (Higgins et al., 2005; Montes & Halterman, 2007). Parents of a child with an autism spectrum disorder also had lower adaptability and cohesion and more problems with expressiveness than population norms (Higgins et al., 2005; Pressman et al., 2006). Summers (2003) noted that the stress of caring for a child with an intellectual disability also appears "to vary with the characteristics of the child, with parents who have children with problem behaviours reporting higher levels of stress" (p. 778). Despite the stressful nature of caring for a child with a disability, Cuskelly and Hayes noted that many parents were remarkably resilient. Factors involved in this resilience were reported to be improved coping strategies of parents over time and improvement in services.

Attention deficit with hyperactivity disorder

In a sample of sibling pairs where one child has ADHD, Pressman et al. (2006) found that "family conflict is significantly associated with sibling similarity in functional impairment associated with ADHD" (p. 349), accounting for 40% of similarity between ADHD-affected sibling pairs. Pressman et al. noted that:

these data underscore the strong links between impairment in children with ADHD and family environment as well as the fact that different processes and mechanisms may contribute to impairment in different children within the same family. (p. 353)

Family functioning in the context of a developmental disability affects not only the person with a disability, but other family members. It is difficult to disentangle, however, whether the disability causes poor overall family functioning, which then leads to individual maladjustment of a sibling - or whether a child's maladjustment to having a sibling with a disability itself leads to the overall poor family functioning. Familial factors are an important environmental influence on children who are at risk of negative outcomes, including children with a disability.

Relationship separation and caring for a person with a disability

A meta-analysis28 of six studies investigating the incidence rates of separation or divorce in families of children with and without disabilities showed that caring for a child with a disability was associated with a higher rate of separation or divorce (Risdal & Singer, 2004). In large-scale epidemiological studies, researchers have also reported higher rates of divorce or separation in families caring for a child with a disability than in other families. For example, data from the 1994 and 1995 disability supplements of the National Health Interview Surveys (NHIS) in the US (n = 3,362) indicated that there were higher percentages of families with school age children with a disability who experienced divorce (14.3% versus 11.4%) and separation (8.2% versus 5.4%) (Witt, Riley & Coiro, 2003). Other analyses of the 1981 disability supplement of the NHIS have also shown that white women were about 3% more likely to divorce if their child aged between 3 and 15 had a physical health condition (Corman & Kaestner, 1992).

A recent study of data from the 2000 US Census also suggested that divorce and separation rates are higher for families with a child aged 5 to 15 years with a disability (Cohen & Petrescu-Prahova, 2006). Children with a disability were 1.64 times more likely to live with a single parent than both parents. A more recent analysis of 3,920 families from US cities also suggested that having a child with poor health decreased the probability of parents living together 12 to 18 months after the child's birth by 10%29 (Reichman, Corman, & Noonan, 2004).

It is important to note that other studies, with smaller samples of families with children with a disability, have not reported significantly higher rates of divorce and separation than found in the general population (e.g., Graeffe & Lichter, 1999). In fact, some early studies of families with a child with Down syndrome found the rate of divorce was half the rate of the general population (Gath & Gumley, 1986). A very recent large-scale study found divorce rates among families with Down syndrome to be lower than families with a child with no identified disability and a child with a birth defect (Urbano & Hodapp, 2007).30

In sum, the literature is dominated by US studies and we were unable to identify any Australian studies that have compared divorce or separation rates of families caring for a person with a disability. Moreover, all of the studies we reviewed examined divorce or separation rates in families caring for a child or adolescent with a disability, even though many families care for adult children, or partners who have a disability.

Support networks in families caring for a person with a disability

Perceptions of support

Much of the literature examining social support has focused on carers' perceptions of support from friends or relatives (Magliano et al., 2006; Schofield et al., 1998). Perceptions of support have robust associations with carers' mental health, but only small associations with physical health. A meta-analysis of correlates of carers' depression showed that carers who perceived that they had more social support had lower levels of depression (Pinquart & Sorensen, 2007). Of all the variables examined, social support had the second strongest association with carers' depression. The same pattern of association between carers' perceptions of social support and physical health was also observed; however, the size of the association was only small. In the large-scale, longitudinal, population-based Victorian Carers study, Schofield et al. (1998) also reported that female carers had lower levels of social support than females who did not have caring responsibilities. People caring for someone with a physical disability reported that they had more support than those caring for a person with dementia or undiagnosed memory loss.

The Victorian Carers study confirmed that the level of perceived support by carers depended on the actual number of support people in their support network (Schofield et al., 1998). Larger support networks were also associated with greater life satisfaction and less resentment and anger about caring for the person with a disability (however, carers' anxiety, depression, feelings of overload and physical health were not associated with the size of their support networks).

Although it is difficult to address directly the perceptions that carers have of support, public policies can be used to address the availability of support, through such things as encouraging family-friendly, flexible work practices to enable a broader group of people to assist with the care of the person with a disability and/or to support the primary carer. Given that the perception of the available support has a positive impact on the level of carers' wellbeing, it is important that carers are aware of the availability of these services and know how to obtain them. In this respect, services that disseminate relevant information to carers about such supports play a significant role.

Social networks

Less is known about carers' actual social contacts and social networks than perceptions of social support. The available evidence does seem to suggest that carers' social lives are affected by caring. One Italian study of 709 carers of people with schizophrenia, 646 carers of patients with physical diseases (e.g., heart, brain, renal and lung diseases, or diabetes) and 714 people from the general population reported that relatives of people with schizophrenia and physical diseases had significantly lower levels of social contacts than the general public, even when controlling for a range of socio-demographic variables (Magliano et al., 2006). Similar analyses also revealed that carers of a person with schizophrenia also had significantly lower levels of practical support (e.g., someone to help with housework or run errands) and emotional support (e.g., someone to talk to or be reassured by) than carers of a person with a physical illness and people from the general public. The same paper also reported that 15% of relatives of people with schizophrenia and 17% of relatives with physical diseases said that their social relationships had worsened in the last year compared to 6% of the general public. Another study in Sweden that compared 783 carers and 4,278 non-carers who were aged 75 years or over reported that carers had smaller social networks than people who did not have caring responsibilities (Ekwall, Sivberg, & Hallberg, 2005).

In Australia, the 2003 ABS Survey of Disability, Ageing and Carers (2004) provides some insight into how the social networks of carers are affected by caring for a person with a disability. Just over half of the carers indicated that their circle of friends was unaffected (55%), and even a small minority (3.3%) indicated that their circle of friends had increased as a result of caring of the person with the disability. However, almost a quarter (23.9%) of carers indicated that they had lost or were losing touch with existing friends since they had started caring. A limitation of the ABS data is that carers were asked to report retrospectively on changes in their social network. For example, some carers may have been caring for the person with a disability for many years and it may have been difficult for them to remember what their social network was like prior to caring. Moreover, the influence of caring on carers' social network may have changed over time as the care needs of the person(s) with a disability had increased or decreased. It is important to note that the 2003 ABS Survey of Disability, Ageing and Carers asked carers to give a global judgement of the effect that caring had had on their social network, without reference to any particular time period, or the frequency of social interactions.

The Victorian Carers study, the other large-scale Australian study, focused on carers' support networks and provided detailed information on how carers' social networks were affected (Schofield et al., 1998). Eighty-four per cent of carers reported that they received help from two other people. Larger support networks were evident when carers were female, a parent or offspring of the person with a disability and worked part-time (compared to non-workers). More support people were also evident when the person with a disability was female and under 21 years of age.31

Very few studies have documented the demographic characteristics of people in carers' social networks; however, the Victorian Carers study collected some demographic information about the 1,770 people who supported the 976 carers (Schofield et al., 1998). One in four were the carers' offspring (26%), with carers' siblings (19%) and spouses (18%) the next most prevalent groups of supporters. As the sample of carers in that study was older (65% were 45 years of age or more), 7% of support people were parents, with other relatives also playing a role (14%). Fifteen per cent of support people were not relatives of the carer.

Filial relationships between people who provided support to the carer and the person with a disability were important determinants of the types of relatives who provided support (Schofield et al., 1998). For example, for carers looking after their parent, 75% of those providing assistance to the carers were the carers' siblings. Children of carers mainly provided support when the carer was caring for their spouse (that is, the child's other parent) or their parent (that is, the child's grandparent). Carers' parents-in-law typically provided support when the person with a disability was the parents-in-law's child or grandchild.

Types of support

Often a distinction is made between different types of support provided by social network members, as they can be associated with different outcomes for the individuals being supported. Schofield and colleagues (1998) reported that higher levels of emotional support provided by network members were associated with higher levels of negative mood and resentment of carers. Although Schofield and colleagues did not comment on this finding it may be that carers who displayed more signs of negativity and resentment elicited higher levels of emotional support from network members. More direct help (e.g., personal care, visiting, or taking the person on an outing) provided by network members was associated with greater life satisfaction and a positive mood and lower levels of negative mood and resentment.

The frequency of providing different types of support was also dependent on the filial relationship; this time the relationship of the support provider to the carer (Schofield et al., 1998). Spouses and siblings of the carer provided the most direct help, while spouses and the carers' parents were more likely to provide indirect help by doing things like housework, home repairs, childminding and providing financial support. Spouses were more likely to provide emotional support than siblings and other relatives.

In conclusion, perceptions of social support had robust associations with carers' depression, but only small associations with carers' physical health (Pinquart & Sorensen, 2007). Australian data suggested that, compared to the general population, carers had lower levels of perceived social support (Schofield et al., 1998). Carers with larger social networks had higher levels of perceived social support; however, international studies suggested that carers have smaller social networks than the general population (Ekwall et al., 2005; Magliano et al., 2006). ABS data from the 2003 Survey of Disability, Ageing and Carers (2004) suggested that not all carers' social networks were affected; 23.9% indicated that they had lost or were losing touch with friends since they started caring. The size of social networks also varied with the demographic characteristics of Australian carers, with female carers, parents or offspring of the person with a disability, and part-time workers having larger social networks than other carers (Schofield et al., 1998). Filial relationships between the support providers and the person with a disability were determinants of the types of relatives who provided support to the carer, while filial relationships between the support provider and the carer were related to the type of support provided (Schofield et al., 1998).

Conclusion

In summary, this brief literature review has identified the following ways in which family functioning is related to the task of caring for a family member with a disability:

  • Caring can impact on a wide range of dimensions of family functioning and family wellbeing, including adaptability, cohesion, relationship satisfaction, role change, conflict, communication, and problem-solving and decision-making.
  • A "stress and coping" framework is useful for understanding the relationship between caring, the burden experienced by carers, coping strategies that carers employ, and the risk of stress or negative outcomes not only for carers, but for other family members.
  • Although the literature reports some negative impacts, many carers emphasise the positive reasons for caring, the benefits they receive, and how good family functioning in the context of caring for a family member with a disability can play a protective role in assisting the carer to cope with their role and promote positive outcomes for the person with a disability and other household members.
  • Families with care responsibilities for a person with a disability may have higher rates of separation or divorce.
  • Most support for carers is provided by their family, and this varies according to how the support providers are related to the carer and the person with a disability.
  • Perceptions of the availability of social support are associated with positive mental health outcomes for carers.
  • Carers generally have smaller social networks than other people, but carers with larger social networks generally have greater satisfaction with the support available to them in their caring role.

Footnotes

28. Meta-analysis is a statistical method of synthesising the results of several quantitative empirical studies. As this technique accounts for the size of the samples and aggregates results across studies, it enables more precise estimates than analyses of any single study might yield.

29. In this study, approximately three-quarters of the parents were unmarried when the child was born.

30. There were 647 families with a child with Down syndrome, 10,823 with birth defects and 361,154 with no disability (Urbano & Hodapp, 2007).

31. The size of the support network was not associated with the type or severity of the condition or the amount of help the person with a disability required with everyday activities, nor was it related to the amount of help the carer required or the years of care provided by the carer.