Academic journal article Journal of Visual Impairment & Blindness

Resilience in Parents of Young Adults with Visual Impairments

Academic journal article Journal of Visual Impairment & Blindness

Resilience in Parents of Young Adults with Visual Impairments

Article excerpt

Abstract: This article reports on a study of the adaptation of parents with children with visual impairment in South Africa. The results showed that familial values (such as attitude toward the disability, religious faith, and familial closeness) permit a process of inclusion (through the use of resources and acceptance of help) and the development of a sense of accomplishment.

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The visual impairment of one family member inevitably affects the family as a whole, possibly for years after the diagnosis (Bambara et al., 2009). Stress is also increased by the additional demands posed by rearing and providing and caring for a child with visual impairment (Bambara et al., 2009). These demands may be emotional, instrumental, or financial (Herring, 2006; Leyser, Heinze, & Kapperman, 1996; Niemann & Jacob, 2000; Ulster & Antle, 2005).

I, the first author, was 6 months old when I was diagnosed with retinoblastoma, a rare childhood eye cancer that affects the retina (Ulster & Antle, 2005). Following invasive treatment that included radiation therapy and enucleation (surgical removal of an eye), I was left with 10% vision in my left eye. Although the shock and sadness following my diagnosis were gradually replaced by acceptance, my mother still reported episodes of intense sadness months after the diagnosis: "When you were two years old, I saw a blind girl playing the piano. I just couldn't stop crying." I was seldom consciously aware of this initial emotional reaction of my parents. Only at age 10, when I lost the remaining 10% of vision in my eye, did I "see" my mother cry about my disability. What I do remember most is that my parents moved to Worcester, the home of the school for students who are blind in the Western Cape province, South Africa, to be close to me. Looking back, I realize the challenges that having a child with a disability posed to my parents, yet my parents never seemed burdened or strained. What was more important was that my parents adapted and continued with their lives after my diagnosis and subsequent blindness. This ability of a family to adapt and prosper in the face of a challenge or stressor, such as a disability, is called "family resilience" (De Haan, Hawley, & Deal, 2002; Walsh, 2003).

McCubbin and McCubbin (1996) developed a resilience model of stress, adaptation, and adjustment. They postulated that the adjustment of a family is influenced by the severity of a stressor and the family's vulnerability, established patterns of functioning, appraisal of the stressor, and existing problem-solving skills. A severe stressor, such as the disability of a child, may cause the disruption of a family's established patterns of functioning. This disruption may result in a crisis, which will necessitate a change in these established patterns. Change, in turn, marks the beginning of the adaptation phase. This phase often requires a family to use internal and external resources to protect and maintain the integrity of the familial system (McCubbin & McCubbin, 1996).

Walsh (2003) explained family resilience in terms of nine key family processes within three broad domains of functioning--the family's belief systems, organizational patterns, and communication processes. In contrast to McCubbin and McCubbin (1996), Walsh (2003) did not include any reference to a previous and an established level of family functioning. Both these frameworks, however, acknowledge the importance of family resilience when adjusting to a stressor and continuing to live life.

Various studies have found that the resilience of families with a child with a visual impairment is often associated with informal support from friends, family members, and the parents of other children with visual impairments (De Steiguer, Erin, Topor, & Rosenblum, 2008; Hodapp, 1998; Ulster & Antle, 2005). A further source of resilience lies in formal support, such as school professionals and physicians (De Steiguer et al. …

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