Kate Scorgie, Ph.D.
Lorraine Wilgosh, Ph.D
Recent research on parent coping and adjustment following diagnosis of disability in a child is drawing attention to the importance of culture as a key variable in how families manage life following diagnosis (Mary, 1990; Watanabe, 1998). Culture provides a framework for interpreting and assigning meaning to life events. Therefore, rather than assuming universality of reaction to diagnosis, it is important for professionals to consider cultural context in family coping and outcome (Ingstad, 1988). For example, Alston and Turner (1994) maintained that African-American family adjustment following stress events incorporates cultural themes, such as strong religious beliefs, intergenerational family bonds, role flexibility and sound work ethic. Similarly, in a study of African American, Hispanic, and Caucasian mothers response to diagnosis of disability, Mary (1990) found both commonalities and differences across cultures, emphasizing the need to further examine the effects of culture on family life management.
McCallion and Janicki (1997) assert that while it is valuable for professionals to consider cultural variations in family adjustment to diagnosis of disability, it is important to avoid stereotyping families from particular minorities. Though families are situated within a culture that influences perception of and response to diagnosis of disability, each family is unique, shaped by the experiences, values and beliefs of each member. Therefore, efficacious models must take into account both cultural and individual variables that may influence parent and family outcome.
For the past twelve years we have been collecting data on effective life management following diagnosis of disability in a child. Utilizing both qualitative (cf. Scorgie, Wilgosh, & McDonald, 1996) and quantitative (cf. Scorgie, Wilgosh & McDonald, 1997) data, we explored strategies used by parents who were identified as effective life managers, as well as parents not so identified. We have examined parent experiences cross-culturally using African-American and Hispanic-American sub-groups (Scorgie, Wilgosh & Sobsey, 2004) and cross-nationally (Nota, Soresi, Ferrarai, Wilgosh, & Scorgie, 2003). Based on data collected across these studies we have developed a model, The Transformational Process Model, which identifies three processes parents encounter following diagnosis of disability in a child.
Transformational Process Model
When a child is diagnosed with a disability the entire family can be affected (Muscott, 2002). Green (2002) purported that diagnosis of disability in a child is a form of personal loss to a parent (p. 21). Not only do the parents experience the loss of an imagined child, but they must also release the hoped-for future life that they and child would share together. In times of significant loss, recovery may require significant change (Bowman, 1999). In other words, when one cannot return to the former way of thinking about or doing things, one must construct a new way of life in order to cope with the loss and move forward (Wade, 1998). Aldwin (1994) contended that there are times when a life event is so profound adaptation requires a major change. When the required change results in different perceptions of the self, of others and of life and what is valuable, transformation occurs. In fact, Aldwin asserted that adjustment following a traumatic life event may be predicated on a persons ability to experience transformation, rather than maintain an obsessive desire to recover life as it was prior to the stress event.
Clearly, the diagnosis of disability in a child for most parents is traumatic. Following diagnosis parents are confronted with many uncertainties and questions regarding the diagnosis and its impact on themselves, their children, their families and their lives. As well, parents may have to contend with conceptions of disability portrayed by extended family members, friends, medical and service professionals, and even strangers, which are shaped by societal, cultural, religious and other constructs. According to the proposed model, as parents strive to deal with the diagnosis and its impact on their lives, they engage in three processes: image-making, meaning-making, and choice-making. While parents bring to the processes their own values and beliefs, construction is situated within a set of overlapping environments, each of which contains ascribed meanings regarding disability that affect action. In addition, though the processes are interconnected, for ease of presentation they will be examined individually.
Life-Trajectory Identity-oriented Questions and Image-making
When a child is diagnosed with a disability, parents often have many questions about their child, their childs future life, and whether they, as parents, will be able to meet the needs of their children. That is, following diagnosis parents pose such questions as: Who is my child? Who can he/she become? Who am I as my childs parent? Who can I become? and What will our lives be like, now and in the future? In response to these questions, parents are required to construct new identities for their children, themselves, and their projected future as a family.
During the process of re-imaging, parents draw on personal values and beliefs. However, research has also indicated that this process can be profoundly shaped by the type of information parents are given and by attitudes toward disability portrayed by professionals during the period of diagnosis (Taanila, Jarvelin, & Kokkonen, 1998). Parents who experience positive adjustment and transformation draw on images of personal, cultural, and familial strength and resilience. For example, an African-American father in one of our studies found personal strength through remembering how his mother raised twelve children while holding down two jobs. However, an African-American mother reflected on the civil rights movement as the basis for her own determination to fight for her sons educational rights. A third African-American parent found strength in the belief that God would never give her more than she could cope with. Another spoke of finding surprising strength deep, down inside emanating from a personal value system centered on a belief that one doesnt give up.
Hispanic-American parents also reported sources of determination and drive differentially within family and cultural heritages, their religious beliefs, and their own personal value systems. A number of Hispanic mothers shared difficulties experienced by fathers, especially denial, after the diagnosis of disability in a child. Due to the fathers inability to construct positive personal, child and family images, several of the marriages ended in divorce. A number of these mothers, however, became active in program development for their children and some have served as advocates and translators for other Spanish-speaking parents.
Our collaborative survey research (Nota et al., 2003; Wilgosh, Nota, Scorgie, & Soresi, 2004) involved two Italian samples of families of children with disabilities. We found strong similarities in effective life management strategies between our Canadian families and the Italian families. One difference that stood out was the role of religion in the Catholic, largely two-parent Italian families. Some parents reported that the experience of having a child with a disability strengthened and matured them; others, that parents fathers and mothers in the same family may use different strategies as they adjust to the diagnosis (e.g., father resigning himself to the situation and mother looking for new contacts and fresh help for the child).
Research contends that people who are able to view themselves as strong and resilient are better able to cope with difficulty (Turnbull & Turnbull, 2001). Therefore, it is important that professionals tap into specific images of strength and resilience that may be different from person to person both within and across cultures, rather than make cultural assumptions about parental coping.
As they re-imaged their children, most parents chose to focus on their childrens strengths, while also acknowledging their needs. They wanted their children to be viewed first and foremost as children, not as disabilities. African-American parents especially worried that professionals might have low expectations for their children, based more on race than on disability. They also were concerned about their childrens lowered self-perceptions when placed in special education classrooms. All parents appreciated professionals who were focused on child strengths and solutions, rather than deficits and difficulties.
Essential Meaning-oriented Questions and Meaning-making
Psychologists contend that following a stress event, people construct meanings regarding the event, why it happened, and its impact on life that facilitate cognitive consistency and control (Meichenbaum & Fitzpatrick, 1993; Wade, 1998). Parents in our studies also reported dealing with the questions: Why did this happen? and What does it mean? In addition, parents often had to deal with meanings proffered by others with whom they had contact and by society in general.
Parents in our studies constructed meanings in a variety of ways. Some found meaning in the belief that everything happens for a reason; whether or not they had been able to discern the reason behind the diagnosis, they believed that ultimate meaning was there. Some parents believed that the diagnosis was sent or permitted by God to teach them something or to result in blessing to them, to the child, or to another person. Alternatively, other parents concluded that things simply happen, and searching for a reason or purpose was futile. The goal for these parents was to determine how they would live following the diagnosis. Others believed that suffering is universal, and they accepted the diagnosis as evidence. While there were some similarities across parent meaning themes, the more important variable for each parent was that the meaning constructed be sufficient for them to make sense of the diagnosis and move forward, though several mentioned that they still asked Why?
In addition to constructing personal meanings, some parents had to deal with negative meanings proffered by others. Several parents had to contend with accusations that their children were stricken as punishment for something that they, the parent, had either done or left undone. Parents who experienced avoidance from family or friends also had to confront and resolve negative meaning constructions about disability. Several African-American parents asserted that placement in a special education classroom, often located at the back of the school grounds, was a form of segregation and that their children were stigmatized through the use of labels. A number of these parents spoke of fighting for their childrens educational rights, and several resorted to legal means.
Parents search for meanings following diagnosis in ways that enable them to maintain a relatively stable, integrated understanding of the world and how it works. Professionals who are aware of the importance of meaning-making can help parents explore interpretations of disability that have been offered by others, provide gentle reproof for unproductive meanings, and support parents as they seek to assimilate the diagnosis into existing meaning schemes or transform inefficient meaning schemes to include new identities and possibilities.
Personal and Family Choice-oriented Questions and Choice-making
Green (2002) purports that while parents are dealing with the tasks of image-making and meaning-making, they also have to care for their children day to day. Nota et al. (2003) claim that following diagnosis most parents are actively engaged in exploring available options and making decisions that will enable them to most effectively manage their lives. For most parents in our studies, choice-making centered on accessing needed services for their children. The three areas of greatest difficulty were justifying appropriate services, locating and funding appropriate services, and dealing with professionals. Instead of being informed about available services by professionals, many parents reported frustration at having to find services on their own and then justify their childs rights to the service. Many felt that agencies were more eager to withhold than to provide services and that agencies seemed more funding-oriented than child-oriented. Several Hispanic parents were uncertain as to whether their children were eligible for certain services and whether services accessed at one period would limit access to future services.
While both groups of US parents spoke of and highly valued helpful professionals, overall they described parent-professional relationships as hierarchical and adversarial. Several African-American parents used war imagery, such as preparing for battle and fighting the system, while Hispanic-American parents focused more on the pain of dealing with professionals who they claimed were condescending and who demeaned them. Parents wanted to be viewed as knowledgeable about their children and welcomed as collaborative partners with professionals. They also wanted service providers to be more child-focused and less funding-focused.
Parents in each of our studies reported experiencing transformation as a result of parenting a child with a disability. Parents attested to such intrapersonal transformation as becoming more compassionate and stronger, and assuming valued roles and responsibilities that would not have otherwise come their way. They reported such interpersonal transformations as being less judgmental and more accepting of others, and learning to celebrate and value the diversity within humanity. Finally, parents attested to changed perspectives on life, such as knowing what is really important in life, a revised understanding of success, and an ability to savor each day.
The Transformation Process Model suggests important implications for professionals. First of all, professionals bring to their work with parents a set of personally and socially constructed perspectives of disability and its impact on personal and family life that can powerfully shape parents reactions to diagnosis. Therefore, it is important for professionals to examine their assumptions about disability to ensure that they are able to engender hope, rather than distress, in parents. Similarly, professionals should not simply assume that their perspectives of disability are shared by parents; rather, they need to explore the parents constructions of disability, the meanings parents ascribed to the diagnosis, and the range of competing messages that parents may be struggling with as they strive to make sense of the diagnosis and more forward.
Professionals who are aware of the processes of image-making, meaning-making and choice-making can assist parents following diagnosis of disability by maintaining a strengths-based child and family focus and validating parents as equal partners in the decision-making process. Professionals can develop empathy with parents, asking themselves how they might respond in similar circumstances. Professionals might also question the utility of the typical way of doing things, ultimately arriving at solution-building that not only facilitates effective life management for a particular family unit, but transforms service provision for others as well.
Finally, for many parents, adjustment following diagnosis of disability in a child is not a linear process. As children progress through various developmental stages, the images, meaning and choices that once worked for parents and their families, may need to be revised to ensure effective life management across a family life trajectory. Unlike linear models, the Transformational Process Model facilitates ongoing construction and transformation of images, meanings and choice options as needed across time. Professionals who understand this ongoing process are more likely to serve as catalysts for healthy parent and family outcome following diagnosis and beyond.
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