A Study of Nigerian Families Who Have a Family Member with Down Syndrome
Paul M. Ajuwon
The Family Quality of Life Survey (FQOLS) (Brown et al., 2006), was administered to a group of 31 families who have children with Down syndrome enrolled at a community-based centre in Nigeria. Ideas on how families perceive services for their children, and the extent to which families are coping, are discussed. Suggestions are made for effective policy and practice and for enhanced understanding of disabilities by the society.
Relations of Parental Perceptions to the Behavioural Characteristics of Adolescents with Down Syndrome
Meghan M. Burke, Marisa H. Fisher, and Robert M. Hodapp
This study examined how the behaviours of individuals with Down syndrome relate to parent functioning during the adolescent years. Measures of personality, intelligence, adaptive, and maladaptive behaviour were collected for 42 adolescents with Down syndrome and related to parental depression, ways of coping, worries about the future, and positive perceptions. Across the adolescent years, most parents continued to feel rewarded by their adolescents with Down syndrome; adolescents who displayed more positive personality characteristics had parents who felt more rewarded by their children. Conversely, those who displayed higher levels of internalizing (but not externalizing) problem behaviours had parents who were significantly more worried about their adolescents futures. Implications are discussed.
The Middle Years and Beyond: Transitions and Families of Adults with Down Syndrome
Nancy S. Jokinen, Matthew P. Janicki, Mary Hogan, and Lawrence T. Force
Normally expected transitions connect the various periods of life. Often these transitions are promted by life events that require adaptation to a changed circumstance and may challenge both individual and family quality of life. Such transitions may be planful (proactive) or demand (reactive). Little, however, has been written about the nature of such transitions and how they specifically affect older-aged families of adults with Down syndrome. Such families are often predominate lifelong carers of adults with Down syndrome. Drawing on research and experience, the authors examined three transition points from a family perspective. Each of these points of change requires that people adapt and may lead to various outcomes, including at times outcomes that are unexpected, stressful, and challenging. The three points of transition examined include moving away from the parental home, changes occurring within a residential service (e.g., staff changes, relocations), and the reactions to the onset and course of dementia. Vignettes and quotes illustrate the complexities of these transitions and show that, even with planful management, often such transitions can go awry and produce unpredictable outcomes.