Impact of disability on families: grandparents' perspectives

Abstract

Grandparents are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal well-being. Implications for policy, practice and research are discussed, particularly grandparents' fear that their family could not cope without their support.

The Experience of Stress and Personal Growth Among Grandparents of Children With and Without Intellectual Disability

“…It is reasonable to assume that these grandparents may therefore refrain from adding to their children's burden by expressing criticism or personal distress. This is in line with the study by Miller et al (2012), who reported that a main theme raised by grandparents was ''holding their emotions.'' According to those authors, grandparents felt that the best way to help their children was to suppress their own emotions and to express positivity, regardless of their own distress and sorrow.…”

“…Despite increasing awareness of the impact of disabilities in children on the nuclear and extended family, little is known about their effects on intergenerational relations in general or on grandparents in particular (Hastings, Thomas, & Delwiche, 2002;Hillman, 2007;Miller, Buys & Woodbridge, 2012;Mitchell, 2007Mitchell, , 2008. The grandparenting role can be unique and meaningful, as grandparenthood can offer a symbolic sense of immortality, a link between history and the future, and compensation for past disappointments.…”

“…Grandparents often regard their grandchildren as the agents of their continuity and take pride in the grandchildren's accomplishments (see, e.g., Kivnick, 1982;Neugarten & Weinstein, 1964). These meanings create a set of expectations in anticipation of the birth of a grandchild that are likely to be thwarted when a child is diagnosed with a disability (Miller et al, 2012;Seligman, 1991). Grandparents of children with disabilities are often faced with a complex, multifaceted, and unexpected reality, and as noted previously, they may undergo a mourning process similar to that experienced by the child's parents (Hillman, 2007).…”

Parental knowledge, attitudes, and behaviors towards children with epilepsy in Belgrade (Serbia)

“…Ramaglia et al [17] reported that in Italy, 8% of the care burden is attributed to grandparents. Similarly, in Australia, grandparents who live relatively close to the nuclear family are included in taking care of their child with special needs, supporting family functioning and quality of life [43]. In our study, because of the involvement of other members of the extended family in child care, it is possible that parents perceive that their child is less competent and, therefore, are more restrictive in terms of various activities.…”

Habilitation Resources in Families With Hearing Impaired Children: Substitution and Complementation of Shortage Services (Republic of Moldova)

“…The necessity of taking care of the child, when societal resources are limited or absent, everyday caregiving and responsibilities affect the individual family' member opportunities (further on education, get job, etc.). Social capital becomes a crucial source for low income families (Miller, Buys & Woodbridge, 2012). Habilitation family resources from sociological theories mean family intentionality to influence the habilitation process, strengthening / building different forms of family capital.…”