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).