Disability does not just happen to an individual; it happens to the whole family. Disability affects families in many different ways, depending on the type of disability, the age of the person, and the type of family. Disability does not go away like acute illness does. It is always there; it is chronic. It changes the life course of the family as a unit and often changes the life course of some family members. Reciprocally, how the family responds to the disability and its challenges affects the life course and development of the person with the disability. Some families cope and adapt very well; they even become stronger by learning to live with disability. Other families struggle and experience more problems when they are not able to discover the resources they need to manage. These two perspectives—the impact of disability on the family and the family's response to the disability—are part of a continuous cycle of effects. These effects are diagrammed in Figure 1.
This way of thinking about the reciprocal effects of the disability on the family and the family on the person with disability is called a family systems perspective (Patterson 1991a). This perspective has become increasingly important for those who develop policies and design programs and interventions to support persons with disability and their families to have a full and complete life (Dunst et al. 1993; Singer and Powers 1993; Turn-bull and Turnbull 1986). From this perspective it is no longer enough to focus only on the person with the disability. Rather, the goals of programs and interventions are to support and empower the families of persons with disabilities so they all can adapt successfully and have a high quality of life (Dunst, Trivette, and Deal 1988).
Definition and Prevalence
Disabilities have become a major health-related issue for an increasing number of people in the United States. Based on data from the 1988 National Health Interview Survey, it is estimated that 35 million Americans have a disability (Pope and Tarlov 1991). Furthermore, the overall prevalence of disabilities has been increasing in the United States, primarily because of biomedical advances that are able to keep people alive longer. This is the case for all ages across the lifespan, from very premature infants to the elderly. However, maintaining life does not always mean cure. Many more individuals live with the residue of what cannot be cured; they live with chronic conditions, and many chronic conditions create disability or gradually lead to disability over time. By definition, disability is the inability to engage in any substantial gainful activity by reason of some medically determined physical or mental impairment that can be expected to last or has lasted for a continuous period of not less than twelve months. Disability is the gap between a person's capabilities and what the environment expects a person to be able to perform in personal, familial, and social roles (Pope and Tarlov 1991). When estimates of the prevalence of disabilities are made, primary social roles are defined as follows: "playing" for children under five years; "going to school" for children ages five to seventeen; "working or keeping house" for adults ages eighteen to sixty-nine; and "living independently" for adults over seventy.
The main causes of activity limitation leading to disability are mobility impairments (38%); chronic diseases (32%); sensory impairments (8%); and intellectual impairments, including mental retardation (7%) (LaPlante 1988). Both the prevalence and the severity of disabilities increase with age. The percent of each age group with a disability is 2 percent of children under five years, 8 percent of children ages five to seventeen years, 10 percent of adults eighteen to forty-four years, 23 percent of adults forty-five to sixty-four years, 36 percent of adults sixty-five to sixty-nine years, and 38 percent of adults over seventy (National Center for Health Statistics 1989). For children under eighteen years, intellectual limitations and chronic diseases are the major causes. Above eighteen years, mobility impairments are the primary cause. For those between eighteen and forty-four years of age, accidents and injuries are a major contributing factor to mobility impairment; among older ages, mobility impairment is more the result of chronic disease, such as arthritis.
Not all chronic conditions are associated with disability. Some chronic conditions cause no limitations. For those that do, the degree of limitation varies from minor to being unable to perform a major activity, such as working. For those conditions associated with disability, families increasingly have taken over a major role in providing assistance and care for their members who are disabled (Chilman, Nunnally, and Cox 1988). Very few families can expect to go through their life course without caring for at least one member with a disability. In many instances, however, the onset and severity of disability can be prevented or postponed, especially those related to chronic diseases. This is influenced by the person's lifestyle, access to regular medical care, and willingness to take an active role in managing his or her health condition. The family, of course, is a critical social context influencing how an individual responds to a chronic condition, as well as how an individual responds to physical, intellectual, and sensory impairment. In this way the family can have a major impact on the course of chronic conditions, if and when disability emerges, and how severe the disability is.
Impact of Disabilities on Families
Disability places a set of extra demands or challenges on the family system; most of these demands last for a long time (Murphy 1982). Many of these challenges cut across disability type, age of the person with the disability, and type of family in which the person lives. There is the financial burden associated with getting health, education, and social services; buying or renting equipment and devices; making accommodations to the home; transportation; and medications and special food. For many of these financial items, the person or family may be eligible for payment or reimbursement from an insurance company and/or a publicly funded program such as Medicaid or Supplemental Security Income. However, knowing what services and programs one is eligible for and then working with a bureaucracy to certify that eligibility (often repeatedly) is another major challenge faced by families. Coordination of services among different providers (such as a physician, physical therapist, occupational therapist, dietician, social worker, teacher, and counselor) who often are not aware of what the other is doing and may provide discrepant information is another challenge faced by families (Sloper and Turner 1992). While care coordination or case management is often the stated goal of service programs, there are many flaws in implementation. Families experience the burden of this lack of coordination.
The day-to-day strain of providing care and assistance leads to exhaustion and fatigue, taxing the physical and emotional energy of family members. There are a whole set of issues that create emotional strain, including worry, guilt, anxiety, anger, and uncertainty about the cause of the disability, about the future, about the needs of other family members, about whether one is providing enough assistance, and so on. Grieving over the loss of function of the person with the disability is experienced at the time of onset, and often repeatedly at other stages in the person's life.
Family life is changed, often in major ways. Care-taking responsibilities may lead to changed or abandoned career plans. Female family members are more likely to take on caregiving roles and thus give up or change their work roles. This is also influenced by the fact that males are able to earn more money for work in society. When the added financial burden of disability is considered, this is the most efficient way for families to divide role responsibilities.
New alliances and loyalties between family members sometimes emerge, with some members feeling excluded and others being overly drawn in. For example, the primary caregiver may become overly involved with the person with disability. This has been noted particularly with regard to mothers of children with disabilities. In these families, fathers often are underinvolved with the child and instead immerse themselves in work or leisure activities. This pattern usually is associated with more marital conflict. It is important to note, however, that there does not appear to be a greater incidence of divorce among families who have a child with a disability, although there may exist more marital tension (Hirst 1991; Sabbeth and Leventhal 1984).
The disability can consume a disproportionate share of a family's resources of time, energy, and money, so that other individual and family needs go unmet. Families often talk about living "one day at a time." The family's lifestyle and leisure activities are altered. A family's dreams and plans for the future may be given up. Social roles are disrupted because often there is not enough time, money, or energy to devote to them (Singhi et al. 1990).
Friends, neighbors, and people in the community may react negatively to the disability by avoidance, disparaging remarks or looks, or overt efforts to exclude people with disabilities and their families. Despite the passage of the Americans with Disabilities Act in 1990, many communities still lack programs, facilities, and resources that allow for the full inclusion of persons with disabilities. Families often report that the person with the disability is not a major burden for them. The burden comes from dealing with people in the community whose attitudes and behaviors are judgmental, stigmatizing, and rejecting of the disabled individual and his or her family (Knoll 1992; Turnbull et al. 1993). Family members report that these negative attitudes and behaviors often are characteristic of their friends, relatives, and service providers as well as strangers (Patterson and Leonard 1994).
Overall, stress from these added demands of disability in family life can negatively affect the health and functioning of family members (Patterson 1988; Varni and Wallander 1988). Numerous studies report that there is all increased risk of psychological and behavioral symptoms in the family members of persons with disabilities (Cadman et al. 1987; Singer and Powers 1993; Vance, Fazan, and Satterwhite 1980). However, even though disability increases the risk for these problems, most adults and children who have a member with a disability do not show psychological or behavioral problems. They have found ways to cope with this added stress in their lives. Increasingly, the literature on families and disabilities emphasizes this adaptive capacity of families. It has been called family resilience (Patterson 1991b; Singer and Powers 1993; Turnbull et al. 1993). Many families actually report that the presence of disability has strengthened them as a family—they become closer, more accepting of others, have deeper faith, discover new friends, develop greater respect for life, improve their sense of mastery, and so on.
While there are many commonalities regarding the impact of disabilities on families, other factors lead to variability in the impact of disability on the family. Included in these factors are the type of disability, which member of the family gets the disability, and the age of onset of the disability.
Disabilities vary along several dimensions, including the degree and type of incapacitation (sensory, motor, or cognitive); the degree of visibility of the disability; whether the course of the condition is constant, relapsing, or progressive; the prognosis or life expectancy of the person; the amount of pain or other symptoms experienced; and the amount of care or treatment required. John Rolland (1994) has outlined a typology of chronic conditions based on some of these factors and has described the psychosocial impact on families based on these factors. His argument, and that of several others (Perrin et al. 1993; Stein et al. 1993), is that the variability in the psychosocial impact of chronic conditions is related more to characteristics of the condition than to the diagnosis per se.
Consider the course of the condition. When it is progressive (such as degenerative arthritis or dementia), the symptomatic person may become increasingly less functional. The family is faced with increasing caretaking demands, uncertainty about the degree of dependency and what living arrangement is best, as well as grieving continuous loss. These families need to readjust continuously to the increasing strain and must be willing to find and utilize outside resources. If a condition has a relapsing course (such as epilepsy or cancer in remission), the ongoing care may be less, but a family needs to be able to reorganize itself quickly and mobilize resources when the condition flares up. They must be able to move from normalcy to crisis alert rapidly. An accumulation of these dramatic transitions can exhaust a family. Disabilities with a constant course (such as a spinal cord injury) require major reorganization of the family at the outset and then perseverance and stamina for a long time. While these families can plan, knowing what is ahead, limited community resources to help them may lead to exhaustion.
Disabilities where mental ability is limited seem to be more difficult for families to cope with (Breslau 1993; Cole and Reiss 1993; Holroyd and Guthrie 1986). This may be due to greater dependency requiring more vigilance by family members, or because it limits the person's ability to take on responsible roles, and perhaps limits the possibilities for independent living. If the mental impairment is severe, it may create an extra kind of strain for families because the person is physically present in the family but mentally absent. This kind of incongruence between physical presence and psychological presence has been called boundary ambiguity (Boss 1993). Boundary ambiguity means that it is not entirely clear to family members whether the person (with the disability in this case) is part of the family or not because the person is there in some ways but not in others. Generally, families experience more distress when situations are ambiguous or unclear because they do not know what to expect and may have a harder time planning the roles of other family members to accommodate this uncertainty.
In addition to cognitive impairment, other characteristics of disabilities can create ambiguity and uncertainty for families. For example, an uncertain life expectancy makes it difficult to plan future life roles, to anticipate costs of care, or to make decisions about the best living arrangements for adults requiring assistance in the activities of daily living. For example, from 1970 to 1991, survival for children with cystic fibrosis increased 700 percent, to a life expectancy of twenty-six years in the United States (Fitzsimmons 1991). These young adults now face difficult family decisions, such as whether to marry and whether to have children. In more extreme cases related to severe medical conditions, persons may have their lives extended by using advances in biomedical science and technology. When this happens, families can be faced with very difficult decisions about what techniques and equipment should be used, for how long, with what expected gains, at what cost, and so on. Society is facing new issues in biomedical ethics, but there is no social consensus about how aggressively to intervene and under what circumstances. Family members who bear the emotional burden of these decisions do not always agree on a course of action and, furthermore, may be blocked by hospitals and courts from carrying out a particular course of action. While these kinds of cases may not yet be widespread, they have sparked intense debate and raised the consciousness of many families about issues they may face.
In addition to type of impairment, there is variability in the severity of impairment. The degree to which a person with disability is limited in doing activities or functions of daily living (e.g., walking, feeding oneself, and toileting) can be assessed and is called functional status. The lower the person's functional status, the more assistance he or she will need from other people and/or from equipment and devices. Family members are a primary source of this needed assistance (Biegel, Sales, and Schulz 1991; Stone and Kemper 1989). Providing this assistance can create a burden for family caregivers, which may result in physical or psychological symptoms of poor health. For example, parents, especially mothers, experience more depression when their children with disabilities have lower functional status (Patterson, Leonard, and Titus 1992; Singer et al. 1993). For elderly caregivers, physical strain may be a limiting factor in how much and for how long assistance can be provided for the disabled individual (Blackburn 1988).
The age of the person when the disability emerges is associated with different impacts on the family and on the family's life course, as well as on the course of development for the person with disability (Eisenberg, Sutkin, and Jansen 1984). When conditions emerge in late adulthood, in some ways this is normative and more expectable. Psychologically it is usually less disruptive to the family. When disability occurs earlier in a person's life, this is out of phase with what is considered normative, and the impact on the course of development for the person and the family is greater. More adjustments have to be made and for longer periods of time.
When the condition is present from birth, the child's life and identity are shaped around the disability. In some ways it may be easier for a child and his or her family to adjust to never having certain functional abilities than to a sudden loss of abilities later. For example, a child with spina bifida from birth will adapt differently than a child who suddenly becomes a paraplegic in adolescence due to an injury.
The age of the parents when a child's disability is diagnosed is also an important consideration in how the family responds. For example, teenage parents are at greater risk for experiencing poor adaptation because their own developmental needs are still prominent, and they are less likely to have the maturity and resources to cope with the added demands of the child. For older parents there is greater risk of having a child with certain disabilities, such as Down syndrome. Older parents may lack the stamina for the extra burden of care required, and they may fear their own mortality and be concerned about who will care for their child when they die.
The course of the child's physical, psychological, and social development will forever be altered by the chronic condition. Since development proceeds sequentially, and since relative success at mastering the tasks of one stage is a prerequisite for facing the challenges of the next stage, one could anticipate that the earlier the onset, the greater the adverse impact on development (Eisenberg, Sutkin, and Jansen 1984).
There are many ways in which the accomplishment of development tasks is complicated for persons with disabilities. This, in turn, has an effect on their families as well as on which family roles can be assumed by the person with disability (Perrin and Gerrity 1984). For example, in infancy, disability may frighten parents, or the infant may be unresponsive to their nurturing efforts such that attachment and bonding necessary for the development of trust are compromised. The parent may feel inadequate as a caregiver, and parenting competence is undermined. For a toddler, active exploration of the social environment, needed to develop a sense of autonomy and self-control, may be restricted because of the child's motor, sensory, or cognitive deficits. Parents, fearing injury or more damage to their young child, may restrict their child's efforts to explore and learn, or they may overindulge the child out of sympathy or guilt. If other people react negatively to the child's disability, parents may try to compensate by being overly protective or overly solicitous. These parent behaviors further compromise the child's development of autonomy and self-control.
As children with disabilities move into school environments where they interact with teachers and peers, they may experience difficulties mastering tasks and developing social skills and competencies. Although schools are mandated to provide special education programs for children in the least restrictive environment and to maximize integration, there is still considerable variability in how effectively schools do this. Barriers include inadequate financing for special education; inadequately trained school personnel; and, very often, attitudinal barriers of other children and staff that compromise full inclusion for students with disabilities. Parents of children with disabilities may experience a whole set of added challenges in assuring their children's educational rights. In some instances, conflict with schools and other service providers can become a major source of strain for families (Walker and Singer 1993). In other cases, school programs are a major resource for families.
Developmental tasks of adolescence— developing an identity and developing greater autonomy—are particularly difficult when the adolescent has a disability. Part of this process for most adolescents generally involves some risk-taking behaviors, such as smoking and drinking. Adolescents with disabilities take risks too, sometimes defying treatment and procedures related to their condition, such as skipping medications or changing a prescribed diet. Issues related to sexuality may be particularly difficult because the person with disability has fears about his or her desirability to a partner, sexual performance, and worries about ever getting married or having children (Coupey and Cohen 1984). There is some evidence that girls may be at greater risk for pregnancy because of their desire to disavow their disability and prove their normalcy (Holmes 1986). Teens with mental impairment may be subjected to sexual exploitation by others.
When disability has its onset in young adulthood, the person's personal, family, and vocational plans for the future may be altered significantly. If the young adult has a partner where there is a long-term commitment, this relationship may be in jeopardy, particularly if the ability to enact adult roles as a sexual partner, parent, financial provider, or leisure partner are affected (Ireys and Burr 1984). When a couple has just begun to plan a future based on the assumption that both partners would be fully functional, they may find the adjustment to the disability too great to handle. The development of a relationship with a significant other after the disability is already present is more likely to lead to positive adjustment. Young adulthood is that critical transition from one's family of origin to creating a new family unit with a partner and possibly children. When disability occurs at this stage, the young adult's parents may become the primary caregivers, encouraging or bringing the young person home again. The risk is that the developmental course for the young adult and his or her parents may never get back on track. This is influenced in part by the extent to which there are independent living options for persons with disabilities to make use of in the community.
When the onset of disability occurs to adults in their middle years, it is often associated with major disruption to career and family roles. Those roles are affected for the person with the disability as well as for other family members who have come to depend on him or her to fulfill those roles. Some kind of family reorganization of roles, rules, and routines is usually required. If the person has been employed, he or she may have to give up work and career entirely or perhaps make dramatic changes in amount and type of work. The family may face a major loss of income as well as a loss in health and other employee benefits. If the person is a parent, childrearing responsibilities may be altered significantly. The adult may have to switch from being the nurturer to being the nurtured. This may leave a major void in the family for someone to fill the nurturing role. If the person is a spouse, the dynamics of this relationship will change as one person is unable to perform as independently as before. The partner with the disability may be treated like another child. The sexual relationship may change, plans for having more children may be abandoned, lifestyle and leisure may be altered. Some spouses feel that their marital contract has been violated, and they are unwilling to make the necessary adjustments. Children of a middle-aged adult with a disability also experience role shifts. Their own dependency and nurturing needs may be neglected. They may be expected to take on some adult roles, such as caring for younger children, doing household chores, or maybe even providing some income. How well the family's efforts at reorganization work depends ultimately on the family's ability to accommodate age-appropriate developmental needs. In families where there is more flexibility among the adults in assuming the different family roles, adjustment is likely to be better.
The onset of disability in old age is more expectable as bodily functions deteriorate. This decline in physical function is often associated with more depression. An older person may live for many years needing assistance in daily living, and the choices of where to get that assistance are not always easily made. Spouses may be unable to meet the extra caretaking needs indefinitely as their own health and stamina decline (Blackburn 1988). Adult children are often in a position of deciding where their elderly parent or parents should live when they can no longer care for themselves. Having their parents move in with them or having them move to a nursing home or seniors' residence are the most common options. However, each of these choices carries with it emotional, financial, and social costs to the elderly person as well as to his or her adult children. This responsibility for elderly parents is not always shared among adult children. Adult daughters are more likely than adult sons to be involved in providing direct care for their elderly parents (Brody 1985). The many decisions and responsibilities can be sources of tension, conflict, and resentment among extended family members. This period of disability in old age can go on for a very long time, given the medical capability to sustain life. While the practice is still not widespread, more elderly people are preparing a living will, which is a legal document preventing extraordinary means from being used to prolong their lives.
Family Response to Disabilities
How do families respond to the challenges of disabilities? Some of the more common responses will be discussed, although it is important to emphasize that there are many different ways by which families can successfully adapt. Response to disability can be divided into three phases: crisis, chronic, and terminal (Rolland 1994).
The initial response of most families to the sudden onset of disability is to pull together and rally around the person affected and provide support to each other (Steinglass et al. 1982). Some or all family members may suspend their daily routines for a period of time as they focus on the immediate crisis. They gather more information about the condition, its course, treatment options, and where to get services. Often there are new behaviors to be learned, including how to provide care and treatment to the person with the disability, how to interact with health care and other service providers, and how to access needed information. There is also a whole set of emotional issues that confronts family members, including grief over the loss of abilities; worry about the future and the costs; feelings of guilt, blame, or responsibility; and trying to find a cause and a meaning for this event. Families are more variable in how they deal with these emotional challenges. Some avoid them altogether and stay focused on gathering information and learning new behaviors. Other families are split, with some members having intense emotional reactions and others avoiding them. Even though there is the expectation that family members should provide support to each other in times of crisis, this is often unrealistic when members are out of sync with each other and each person needs so much. This is a place where health care providers could be more helpful to families—both in validating their strong emotional reactions and in providing support or finding other resources, as well as in recognizing and not judging family members who have different responses. This is a very vulnerable time for most families, and those who make the diagnosis and provide the initial care are powerful in influencing how the family responds. In many ways their early response sets the stage for how the family will adapt to the disability over the long run (Rolland 1994).
Following this crisis phase, there is the chronic phase of living with a disability. This phase varies in length depending on the condition, but it is essentially the "long haul," when the family settles into living with the disability. The ultimate challenge to the family is to meet the disability-related needs and simultaneously to meet the needs of the family and its members of having a normal life. A metaphor used to describe this challenge is "finding a place for the disability in the family, but keeping the disability in its place" (Gonzalez, Steinglass, and Reiss 1989).
The terminal phase is when the inevitability of death is clear. Of course, not all conditions signal a terminal phase, but for those that do, the patient and family are faced with a set of choices about how directly they wish to face death and saying good-bye. Families vary in their responses at this phase as well. In some cases, it is an occasion of healing and of celebration of what the person's life has meant for a family. In other cases, it can be a tremendous relief and an escape from a burden that was resented and never acknowledged. Family members who respond in this way usually need healing after the death. In still other families, the death creates a void in the family's lifestyle that may never be filled because the person's disability was the cornerstone around which family life was organized.
How the family organizes itself for the chronic phase of a disability is particularly important in understanding how the course of development for the person, the disability, and the family will evolve (see Figure 1, lower left quadrant). The central issue seems to be the degree to which the condition takes over family life and becomes the centerpiece around which all other activities are organized. David Reiss, Peter Steinglass, and George Howe (1993) have emphasized that a family's identity can be subsumed within and around the disability: "We are an 'asthmatic family.'" Important aspects of family life such as routines, rituals, leisure activities, and friends may be changed or given up to accommodate the disability-related needs. One person's needs take precedence over the needs of the whole family system to mature and for other members to progress along their developmental course. This "skew toward the disability" can evolve into a larger pattern of family responses (Gonzalez, Steinglass, and Reiss 1989). There is the tendency for family members to hold back from discussing any strong negative feelings they may have about their situation. It is as though they have no right to feel angry or resentful since, after all, they are not the one with the disability. This can lead to general repression of feelings in the family—an emotional shutdown. The overall climate in the family may frequently be tense, as though "walking on eggshells." When no one wants to upset the balance, there is a tendency to try to maintain control by becoming rigid and fixed in daily routine and activity. The flexibility that is generally adaptive for families may be given up. If families get to this point, they usually are resistant to help from the outside, including advice from friends and relatives. They tend to become socially isolated. Families can stay locked in this pattern for a very long time. A crisis related to the chronic condition or even related to another family member may be the occasion for such a pattern to change (since crisis, by definition, disrupts the status quo) and could put the family in contact with professional or informal resources that could help them. This particular pattern of family response, which is based on clinicians' experiences working with families coping with disability, has been elaborated to illustrate one way in which a family's response patterns could be problematic for the person with the disability and for the family unit. However, there are many other ways by which families respond.
There is a growing body of research that emphasizes the many positive ways by which families adapt to disability. Several aspects of family functioning patterns have been associated with good adjustment in the person with the disability and in other family members. This approach emphasizes resilience, or the ability of families to discover resources and overcome challenges. Nine aspects of resilient family process have been described based on the findings from numerous studies of successful family coping with disabilities (Patterson 1991b).
Balancing the condition with other family needs. Because there is a tendency to let the disability dominate daily life, many families learn to meet the normative developmental needs of the person with the disability as well as their disability needs (Cappelli et al. 1989). They plan for and take time for other family needs as well as those associated with the chronic condition (Beavers et al. 1986; Spinetta et al. 1988). They also try to maintain their normal family routines and rituals as a way to preserve their identity and lifestyle (Newbrough, Simpkins, and Maurer 1985; Steinglass and Horan 1987).
Maintaining clear family boundaries. A boundary is that psychological line that sets a system, such as a family, apart from its context. While families need to develop connections to the service delivery system to meet the needs of the person with a disability, they also need to maintain their own integrity and sense of control over their lives and not allow themselves to be overdirected by what professionals want them to do. In this way the family maintains its external boundary and improves the likelihood that the family will stay intact. Inside the family, it is usually best for family functioning when the parents work together to manage the family. This is called a generational boundary. When it is clear, children know that parents are in charge, and they function better (Beavers et al. 1986; Foster and Berger 1985). It reduces the likelihood of overinvolvement of one parent with the child, and it helps to maintain marital quality (Cappelli et al. 1989).
Developing communication competence. When disability is present, there are often more decisions to be made and more problems to be solved. Many families living with disability become more effective in learning to work through these issues (Newbrough, Simpkins, and Maurer 1985). Because there are so many intense feelings associated with living with disability, families do better over the long run when they are able to express feelings openly and respectfully, even when the feelings are negative and seem unjustified (Daniels et al. 1987; Kupst and Schulman 1988).
Attributing positive meanings to the situation. In addition to being able to talk openly, families who are able to think positively about their situation and develop positive attitudes manage better (Austin and McDermott 1988; Cowen et al. 1985; Krause and Seltzer 1993). Family members often acknowledge the positive contributions that the person with disability brings to family life (Behr and Murphy 1993) and how they have developed a new outlook on life that has more meaning (Frey, Greenberg, and Fewell 1989; Venters 1981).
Maintaining family flexibility. Flexibility is one of those family resources that benefits all families, particularly when chronic demands are present and when day-to-day life is not predictable. Being able to shift gears, change expectations, alter roles and rules, and try new things all contribute to better outcomes (Watson, Henggeler, and Whelan 1990).
Maintaining a commitment to the family unit. Of all the family resources studied, cohesion, or the bonds of unity and commitment linking family members, is probably the single most important protective factor that has consistently been reported in well-functioning families when a member has a chronic condition (Daniels et al. 1987; Kazak 1989; Spinetta et al. 1988; Thompson et al. 1992; Varni and Setoguchi 1993). These families cooperate with and support each other in their efforts to manage the disability. One member does not have a disproportionate burden of caregiving. A sense of teamwork prevails. Good family relationships provide a buffer from the stress of care-giving (Evans, Bishop, and Ousley 1992).
Engaging in active coping efforts. Many different aspects of coping have been studied relating to families' responses to chronic conditions. Those families who actively seek information and services (Donovan 1988), who actively work to solve problems and express feelings (Timko, Stovel, and Moos 1992), and who balance their personal, family, and illness needs (Patterson et al. 1993) show better adaptation than do families who engage in passive resignation.
Maintaining social integration. The ability to maintain supportive relationships with people in the community is another important protective factor for the family (Frey, Greenberg, and Fewel 1989; Kazak 1989; Jessop, Riessman, and Stein 1988). It is also a resource that often is threatened by the presence of disability in the family. There may be less time for maintaining social connections, and in some cases, friends and relatives are not supportive in their responses and old networks are abandoned. Support from other families who have a member with a chronic condition has become a major resource to many families, as evidenced in the many parent-to-parent support programs (Santelli et al. 1993).
Developing relationships with professionals. In addition to informal support from friends and relatives, the quality of the relationships that families have with professionals who provide services to the member with a disability becomes another protective factor for them (Walker and Singer 1993). Family members, of course, are only half of these dyads and cannot solely determine the quality of the relationship. Taking time to share information, working together to make decisions about care, respecting differences, avoiding attempts to control the other, and sharing risks associated with outcomes are factors that contribute to satisfaction on both sides (Chesler and Barbarin 1987).
Programs and Interventions
The unit of care and support when a person has a disability should be the family or caregiving system, not just the individual (McDaniel, Hepworth, and Doherty 1992). As already noted, the family is both affected by the disability and is a major source of capabilities for responding to it. Within the United States, there is a strong emphasis on family support initiatives as a way to improve the quality of life for people with disabilities (Dunst et al. 1993). Family support has been articulated in the philosophy of the Maternal and Child Health Bureau with regard to children with special health needs: Care should be family-centered, community-based, coordinated, comprehensive, and culturally competent (Hutchins and McPherson 1991).
Family support is also being implemented in early intervention programs for children with disabilities. Federal legislation has mandated states to develop systems of care that integrate health, education, and social services for these children and their families. One component of this legislation calls for an individual family service plan (McGonigel and Garland 1988). There is a meeting of family members and professionals serving the child to develop a comprehensive plan for meeting the needs of the child and the family. Families have a key role in identifying the needs and in identifying their strengths. The intent of the legislation is that parents should be included as an equal partner and full collaborator in deciding about and managing their child's care.
At the heart of the family support movement is the concept of family empowerment, which is defined as enabling an individual or family to increase their abilities to meet needs and goals and maintain their autonomy and integrity (Patterson and Geber 1991). Rather than the helper doing everything for the person being helped, thus maintaining dependency, a process is begun whereby the help-seeker discovers and builds on his or her own strengths, leading to a greater sense of mastery and control over his or her life.
Professionals who provide services to persons with disabilities and their families are being challenged to use this orientation when working with families. Training programs have curricula for developing these skills in new professionals. The emphasis is on the process of providing services and not just the outcomes. Empowerment involves believing in and building on the inherent strengths of families; respecting their values and beliefs; validating their perceptions and experiences as real; creating opportunities for family members to acquire knowledge and skills so they feel more competent; mobilizing the family to find and use sources of informal support in the community; and developing a service plan together and sharing responsibility for it (Dunst et al. 1993; Knoll 1992).
Coordination is another important way by which service delivery can be improved for persons with disabilities. Many persons need a multiplicity of services, and often they do not know what they are eligible for or where to find it. Case management or care coordination is needed to provide this information, to create linkages among these providers, and to assure that families are given complete and congruent information (Sloper and Turner 1992). In some instances, families are able to function as their own case managers, but this requires a high level of knowledge as well as skill in dealing with a bureaucratic system. Furthermore, it consumes a lot of time that many family members would prefer to devote to meeting other family needs. High-quality care coordination can reduce costs, relieve family stress, and improve the quality of life for persons with disabilities.
Another strategy to facilitate family coping and adaptation is linking persons with disabilities and their families together in support programs. There are many support groups for specific conditions (epilepsy, spina bifida, etc.) across the country that meet regularly to provide information and emotional support to those living with disability. In other instances, someone who has lived with the disability for a long time is paired with someone newly diagnosed (Santelli et al. 1993). These informal connections (in contrast to professional therapy services) are particularly effective because people feel they are not alone and are not abnormal in their struggles. There is the opportunity both to give and to receive support, which benefits both sides.
While family members are the primary source for providing care and assistance to a person with a disability, many families are unable to do this for an extended period of time without help from other community sources (Nosek 1993). Many persons with disability now use personal assistance services on a regular basis, which relieves the family of these tasks and allows them to interact with the person with a disability in more normative ways. In addition, personal assistants contribute to an adult's ability to make independent choices about where he or she will live. It makes it possible to transition from the family home and to live as an adult in the community.
Respite care is another community resource that can give families a break from caretaking and prevent total burnout and exhaustion (Folden and Coffman 1993). Respite care is usually provided on an as-needed basis, in contrast to personal assistants, who are usually available every day. When these kinds of resources are available to support families in their caregiving efforts, the families are better able to keep the persons with disability at home, and they do not have to turn to institutional placement.
Many different types of interventions have been developed by psychologists, social workers, and other mental health professionals for families who have members with disabilities (Singer and Powers 1993). These psychoeducational interventions are designed with a variety of goals in mind. They may be designed to support families in dealing with their emotional responses or to teach skills and strategies for managing difficult behavior. Programs may teach techniques for managing stress more effectively, or they may teach family members how to interact with professional providers of services. Some programs target one individual in the family, such as the primary caregiver; in other instances the whole family is the unit of intervention (Gonzalez, Steinglass, and Reiss 1989). Many families with members with disabilities are reluctant to use psychological resources because they cannot find time to go or they may interpret use as a judgment that they are not competent. Generally, persons from lower socioeconomic groups are more likely to view therapy as stigmatizing and so do not participate. Given the evidence that disability increases stress in families and increases the chance that someone will experience psychological or behavioral problems, programs and services to help families cope could prevent many of these secondary problems.
With increasing numbers of persons experiencing disability in the United States and with the reality that families are their primary source of care, it is important that public policies are designed so that families are given the support they need to fulfill this important role. Most families want to provide assistance to their members. However, community resources are also needed to augment their contributions. This kind of family-community collaboration will ultimately contribute to the best quality of life for persons with disabilities, members of their families, and the people in their communities.
See also:Alzheimer's Disease; Anxiety Disorders; Boundary Ambiguity; Caregiving: Formal; Caregiving: Informal; Childcare; Chronic Illness; Communication: Family Relationships; Death and Dying; Dementia; Developmental Disabilities; Developmental Psychopathology; Elders; Family Roles; Family Strengths; Family System Theory; Grief, Loss, and Bereavement; Health and Families; Respite Care: Adult; Respite Care: Child; School; Stress
albrecht, g.; seelman, k.; and bury, m. (2001). handbook of disability studies. thousand oaks, ca: sage publications.
austin, j., and mcdermott, n. (1988). "parental attitude and coping behavior in families of children with epilepsy." journal of neuroscience nursing 20:174–179.
baxter, c.; cummins, r.; and polak, s. (1995). "a longitudinal study of parental stress and support: from diagnosis of disability to leaving school." international journal of disability, development, and education 42:125–136.
beavers, j.; hampson r.; hulgus, y.; and beavers, w.(1986). "coping in families with a retarded child." family process 25:365–378.
behr, s., and murphy, d. (1993). "research progress andpromise: the role perceptions in cognitive adaptation to disability." in cognitive coping, families, and disability, ed. a. turnbull, j. patterson, s. behr, d. murphy, j. marquis, and m. blue-banning. baltimore: paul h. brookes.
biegel, d.; sales, e.; and schulz, r. (1991). family care-giving in chronic illness. newbury park, ca: sage publications.
blackburn, j. (1988). "chronic health problems of the elderly." in chronic illness and disability, ed. c. chilman, e. nunnally, and f. cox. newbury park, ca: sage publications.
boss, p. (1993). "the reconstruction of family life withalzheimer's disease: generating theory to lower family stress from ambiguous loss." in sourcebook of family theories and methods: a contextual approach, ed. p. boss, w. doherty, r. larossa, w. schumm, and s. steinmetz. new york: plenum.
breslau, n. (1993). "psychiatric sequelae of brain dysfunction in children: the role of family environment." in how do families cope with chronic illness?, ed. r. cole and d. reiss. hillsdale, nj: lawrence erlbaum.
brody, e. (1985). "parent care as a normative familystress." gerontologist 25:19–29.
cadman, d.; boyle, m.; szatmari, p.; and offord, d.(1987). "chronic illness, disability, and mental and social well-being: findings of the ontario child health study." pediatrics 79:805–812.
cappelli, m.; mcgrath, p.; macdonald, n.; katsanis, j.; andlascelles, m. (1989). "parental care and overprotection of children with cystic fibrosis." british journal of medical psychology 62:281–289.
chesler, m., and barbarin, o. (1987). childhood cancer and the family: meeting the challenge of stress and support. new york: brunner/mazel.
chilman, c.; nunnally, e.; and cox, f., eds. (1988).chronic illness and disability. newbury park, ca: sage publications.
cohen, m. (1999). "families coping with childhoodchronic illness: a research review." families, systems, and health 17:149–164.
cole, r., and reiss, d. (1993). how do families cope with chronic illness? hillsdale, nj: lawrence erlbaum.
coupey, s. m., and cohen, m. i. (1984). "special considerations for the health care of adolescents with chronic illnesses." pediatric clinics of north america 31:211–219.
cowen, l.; corey, m.; keenan, n.; simmons, r.; arndt, e.; and levison, h. (1985). "family adaptation and psychosocial adjustment to cystic fibrosis in the preschool child." social science and medicine 20:553–560.
daniels, d.; moos, r.; billings, a.; and miller, j. (1987)."psychosocial risk and resistance factors among children with chronic illness, healthy siblings, and healthy controls." journal of abnormal child psychology 15:295–308.
donovan, a. (1988). "family stress and ways of coping with adolescents who have handicaps: maternal perceptions." american journal of mental retardation 92:502–509.
dunst, c.; trivette, c.; and deal, a. (1988). enabling andempowering families: principles and guidelines for practice. cambridge, ma: brookline books.
dunst, c.; trivette, c.; starnes, a.; hamby, d.; and gordon, n. (1993). building and evaluating family support initiatives. baltimore: paul h. brookes.
dyson, l. (1993). "response to the presence of a child with disabilities: parental stress and family functioning over time." american journal on mental retardation 98:207–218.
eisenberg, m. g.; sutkin, l. c.; and jansen, m. a:, eds.(1984). chronic illness and disability through the lifespan: effects on self and family. new york: springer-verlag.
evans, r.; bishop, d.; and ousley, r. (1992). "providingcare to persons with physical disability: effect on family caregivers." american journal of physical medicine and rehabilitation 71:140–144.
fitzsimmons, s. c. (1991). cystic fibrosis foundation patient registry pulmonary data 1990. bethesda, md: cystic fibrosis foundation.
folden, s., and coffman, s. (1993). "respite care for families of children with disabilities." journal of pediatric health care 7:103–110.
foster, m., and berger, m. (1985). "research with families with handicapped children: a multilevel systemic perspective." in the handbook of family psychology and therapy, vol. ii, ed. l. l'abate. homewood, il: dorsey press.
frey, k.; greenberg, m.; and fewel, r. (1989). "stress andcoping among parents of handicapped children: a multidimensional approach." american journal of mental retardation 94:240–249.
gonzalez, s.; steinglass, p.; and reiss, d. (1989). "putting the illness in its place: discussion groups for families with chronic medical illnesses." family process 28:69–87.
hirst, m. (1991). "dissolution and reconstitution of families with a disabled young person." developmental medicine and child neurology 33:1073–1079.
hodapp, r.m. (1998). development and disabilities: intellectual, sensory and motor impairments. new york: cambridge university press.
holmes, d. m. (1986). "the person and diabetes in psychosocial context." diabetes care 9:194–206.
holroyd, j., and guthrie, d. (1986). "family stress withchronic childhood illness: cystic fibrosis, neuromuscular disease, and renal disease." journal of clinical psychology 42:552–561.
hornby, g. (1992). "a review of fathers' accounts oftheir experiences of parenting children with disabilities." disability, handicap, and society 7:363–374.
hutchins, v., and mcpherson, m. (1991). "national agenda for children with special health needs." american psychologist 46:141–143.
ireys, h., and burr, c. (1984). "apart and a part: familyissues for young adults with chronic illness and disability." in chronic illness and disability through the life span: effects on self and family, ed. m. g. eisenberg, l. c. sutkin, and m. a. jansen. new york: springer-verlag.
jessop, d.; riessman, c.; and stein, r. (1988). "chronicchildhood illness and maternal mental health." journal of developmental and behavioral pediatrics 9:147–156.
kazak, a: (1989). "family functioning in families witholder institutionalized retarded offspring." journal of autism and developmental disorders 19:501–509.
knoll, j. (1992). "being a family: the experience of raising a child with a disability or chronic illness."monographs of the american association on mental retardation 18:9–56.
krause, m., and seltzer, m. (1993). "coping strategiesamong older mothers of adults with retardation: a lifespan developmental perspective." in cognitive coping, families, and disability, ed. a: turnbull, j. patterson, s. behr, d. murphy, j. marquis, and m. blue-banning. baltimore: paul h. brookes.
kupst, m., and schulman, j. (1988). "long-term coping with pediatric leukemia: a six-year follow-up study." journal of pediatric psychology 13:7–22.
laplante, m. p. (1988). data on disability from the national health interview survey, 1983–1985: an infouse report. washington, dc: national institute on disability and rehabilitation research.
lopez, s. (1998). "maternal reactions to children withmental retardation." in handbook of mental retardation and development, ed j. burack, r. hodapp, and e. zigler. new york: cambridge university press.
marshak, l.; seligman, m.; and prezant, f. (1999). disability and the family life cycle. new york: basic books.
mcdaniel, s.; hepworth, j.; and doherty, w. (1992). medical family therapy. new york: basic books.
mcgonigel, m., and garland, c. (1988). "the individualized family service plan and the early intervention team: team and family issues and recommended practices." infants and young children l:10–21.
murphy, m. a. (1982). "the family with a handicappedchild: a review of the literature." developmental and behavioral pediatrics 3:73–82.
national center for health statistics. (1989). "current estimates from the national health interview survey, 1988." vital and health statistics. series 10, no. 166, phs 89–1501. washington, dc: u.s. government printing office.
newbrough, j.; simpkins, c.; and maurer, m. (1985). "afamily development approach to studying factors in the management and control of childhood diabetes." diabetes care 8:83–92.
nosek, m. (1993). "personal assistance: its effect on thelong-term health of a rehabilitation hospital population." archives of physical medicine and rehabilitation 74:127–132.
patterson, j. (1988). "chronic illness in children and theimpact: on families." in chronic illness and disability, ed. c. chilman, e. nunnally, and f. cox. newbury park, ca: sage publications.
patterson, j. (1991a). "a family systems perspective forworking with youth with disability." pediatrician 18:129–141.
patterson, j. (1991b). "family resilience to the challenge of a child's disability." pediatric annals 20:491–496.
patterson, j.; budd, j.; goetz, d.; and warwick, w. (1993)."family correlates of a ten-year pulmonary health trend in cystic fibrosis." pediatrics 91:383–389.
patterson, j., and geber, g. (1991). "preventing mentalhealth problems in children with chronic illness or disability." children's health care 20:150–161.
patterson, j., and leonard, b. (1994). "caregiving andchildren." in family caregiving across the lifespan, ed. e. kahana, d. biegel, and m. wykle. newbury park, ca: sage publications.
patterson, j.; leonard, b.; and titus, j. (1992). "home care for medically fragile children: impact on family health and well-being." developmental and behavioral pediatrics 13:248–255.
perrin, e., and gerrity, p. s. (1984). "development of children with a chronic illness." pediatric clinics of north america 31:19–31.
perrin, e.; newacheck, p.; pless, i; drotar, d.; gortmaker,s.; leventhal, j.; perrin, j.; stein, r.; walker, d.; and weitzman, m. (1993). "issues involved in the definition and classification of chronic health conditions." pediatrics 91:787–793.
pope, a., and tarlov, a., eds. (1991). disability in america: toward a national agenda for prevention. washington, dc: national academy press.
reiss, d.; steinglass, p.; and howe, g. (1993). "the family's reorganization around illness." in how do families cope with chronic illness?, ed. r. cole and d. reiss. hillsdale, nj: lawrence erlbaum.
rolland, j. (1994). families, illness, and disability: an integrative treatment model. new york: basic books.
sabbeth, b., and leventhal, j. (1984). "marital adjustment to chronic childhood illness: a critique of the literature." pediatrics 73:762–768.
santelli, b.; turnbull, a.; lerner, e.; and marquis, j. (1993)."parent-to-parent programs." in families, disability, and empowerment, ed. g. singer and l. powers. baltimore: paul h. brookes.
singer. g.; irvin, l.; irvine, b.; hawkins, n.; hegreness, j.; and jackson, r. (1993). "helping families adapt positively to disability." in families, disability, and empowerment, ed. g. singer and l. powers. baltimore: paul h. brookes.
singer, g., and powers, l., eds. (1993). families, disability, and empowerment. baltimore: paul h. brookes.
singhi, p.; goyal, l.; pershad, d.; singhi, s.; and walia, b.(1990). "psychosocial problems in families of disabled children." british journal of medical psychology 63: 173–182.
sloper, p., and turner, s. (1992). "service needs of families of children with severe physical disability." child: care, health, and development 18:259–282.
spinetta, j.; murphy, j.; vik, p.; and day, j. (1988). "long-term adjustment in families of children with cancer." journal of psychosocial oncology 6:179–191.
stainton, t., and besser, h. (1998). "the positive impact of children with an intellectual disability on the family." journal of intellectual & developmental disability 23:57–70.
stein, r. e. k.; bauman, l. j.; westbrook, l. e.; coupey, s.m.; and ireys, h. t. (1993). "framework for identifying children who have chronic conditions: the case for a new definition." the journal of pediatrics 122:342–347.
steinglass, p., and horan, m. (1987). "families andchronic medical illness." journal of psychotherapy and the family 3:127–142.
steinglass, p.; temple, s.; lisman, s.; and reiss, d. (1982)."coping with spinal cord injury: the family perspective." general hospital psychiatry 4:259–264.
stone, r., and kemper, p. (1989). "spouses and children of disabled elders: how large a constituency for long-term care reform?" milbank quarterly 67:485–506.
stoneman, z., and berman, p., eds. (1993). the effects ofmental retardation, disability, and illness on sibling relationships: research issues and challenges. baltimore: brookes.
taanila, a.; kokkonen, j.; and jarvelin, m. (1996). "thelong-term effects of children's early-onset disability on marital relationships." developmental medicine and child neurology 38:567–577.
thompson, r.; gustafson, k.; hamlett, k.; and spock, a.(1992). "stress, coping, and family functioning in the psychological adjustment of mothers of children and adolescents with cystic fibrosis." journal of pediatric psychology 17:573–585.
turnbull, a.; patterson, j.; behr, s.; murphy, d.; marquis, j.; and blue-banning, m., eds. (1993). cognitive coping, families, and disability. baltimore: paul h. brookes.
turnbull, a. p., and turnbull, h. r. (1986). families, professionals, and exceptionalities: a special partnership. columbus, oh: charles e. merrill.
vance, j.; fazan, l.; and satterwhite, b. (1980). "effects of nephrotic syndrome on the family: a controlled study." pediatrics 65:948–956.
varni, j., and setoguchi, y. (1993). "effects of parental adjustment on the adaptation of children with congenital or acquired limb deficiencies." developmental and behavioral pediatrics 14:13–20.
varni, j., and wallender, j. (1988). "pediatric chronic disabilities: hemophilia and spina bifida as examples." in handbook of pediatric psychology, ed. d. routh. new york: guilford.
venters, m. (1981). "familial coping with chronic and severe childhood illness: the case of cystic fibrosis." social science and medicine 15a:948–956.
walker, b., and singer, g. (1993). "improving collaborative communication between professionals and parents." in families, disability, and empowerment, ed. g. singer and l. powers. baltimore: paul h. brookes.
watson, s.; henggeler, s.; and whelan, j. (1990). "familyfunctioning and the social adaptation of hearing-impaired youths." journal of abnormal child psychology 18:143–163.
yau, m., and li-tsang, c. (1999). "adjustment and adaptation in parents of children with developmental disability in two-parent families: a review of the characteristics and attributes." british journal of developmental disabilities 45:38–51.
joÄn m. patterson (1995) bibliography revised by james j. ponzetti, jr.