A mere glance at a family photograph of the Victorian era leaves little doubt of the position of the figure exuding impervious, authoritarian detachment. Austere, rigid and solemn, it is not hard to guess who cast the shadow over the picture. Arrestingly imposing in his role as backbone of the family, this is the nineteenth century legacy image of the father. However, the last century has seen fatherhood redefine itself and the more liberal, lenient and openly loving figure replaced the strict patriarchal model. In contemporary times, fathers are regularly seen comfortably behind a stroller, outdoors with children on their shoulders, at home tousling with their children, and considerably more involved in school and social events. Unashamedly, fathers have moved toward both acknowledging and displaying a softer paternal image. By definition fatherhood is a decidedly individual concept and a unique experience, involving much more than being the male parent in a family, the family protector, or the provider of paycheques. Although the past decade has seen a surge of research and interest in fatherhood with an increased recognition that the involvement of fathers contribute to the well-being, cognitive growth and social competence of their children, there remains a deficit in research on the experiences, perceptions and involvement of fathers of children diagnosed with Down syndrome. And whilst most of this knowledge base is extrapolated from studies about the mother’s experience, true understanding requires that fathers are studied directly. Mothers and fathers respond differently to the pressure associated with raising a child with Down syndrome and literature supports the common view that men are less likely and easy to engage in therapy than women, are less likely to attend therapy, or seek help for physical or psychological problems. For fathers of any differently abled child, the distance between the idealized fathering experience and the actual one may be enormous. Based upon the patriarchy model of the family, in many conventional homes, the wife and mother is like a thermometer, sensing and reflecting the home’s temperature, whilst the father and husband is like the home’s thermostat, which determines and regulates the temperature. The equilibrium of the father plays an important role in his ‘thermostat settings’ to set the right temperature in the marriage and his family. Having a differently abled child is almost never expected and often necessitates a change in plans as the family members adjust their views of their own future, their future with their child, as well as how they will henceforth operate as a family.Some fathers may experience uncertainty about their parenting role of a child diagnosed with Down syndrome, often resulting in peculiar behaviours of the father. This may include engrossing themselves into their work, hobbies, sport, and so forth, almost abdicating their duty as father; believing that the mother knows best (sometimes using their own lack of knowledge as a cop-out); or, they simply withdraw because the mother takes such complete control of every aspect of the child that the father feels inadequate, superfluous, and peripheral as parent. Each parent grieves the ‘loss’ of the child they expected in their own individual way. However, such a highly emotive situation may be compounded by the following aspects: the undeniable pressure of caring for the differently abled child; the additional financial burden; a waning social life; and, the incapacity to cope emotionally whilst invariably displaying the contrary purely to create the illusion that they are indeed coping. Fathers need to develop strategies and skills to cope with the very real and practical needs of parenting their child with Down syndrome, to furthermore minimize relationship conflict and misunderstanding, and to support their child’s optimal development. How these specific issues are embraced and managed may dramatically influence the peace and harmony of family life as well as the marital relationship. This study explores the perspectives of fathers of a child with Down syndrome to ultimately support this unique journey as they navigate their way through “Down”town Holland, as illustrated in the analogy to follow.

The unique physical features of the child with Down syndrome (DS) may lead to stigmatization and social isolation of the child, as well as their entire families. A child with DS may require some help and constant attention from the primary caregiver and may even be permanently dependent, depending on the severity of DS. The researcher has explored and described the experiences of primary caregivers of children with DS in the Kwazakhele community while caring for these children. The research study employed a qualitative, exploratory, descriptive and contextual research design. The research population included primary caregivers of children with DS who were between ages of two years and older because a DS diagnosis can be delayed and only be discovered later in life. Purposive sampling was used to select the research participants. The data was collected using in-depth one-on-one interviews, and all interviews were recorded using a voice recorder. Thematic analysis as a version of content analysis was used, meaning the researcher used themes and sub-themes to analyze data with the help of an independent coder. A pilot study was conducted before undertaking the actual research using the same methods and designs as those of the main study. Strategies were implemented throughout the study to ensure trustworthiness and adherence to ethical principles. The study findings revealed that the participants experienced diverse emotions upon initially finding out that their child has DS. The participants indicated that they had to modify their lives including having to give up their personal lives just to ensure that their children got the best care and their full attention. It appeared that some participants got full support from their partners and families, while other participants had no support system. With further exploration, it emerged that the study participants shared some positive experiences with their children with DS. However, they indicated a need for relevant education facilities for their children as well as community support. Recommendations were made with regard to nursing education, nursing practice and nursing research.

Indiana University-Purdue University Indianapolis (IUPUI) / Little is known regarding the psychosocial outcomes of adult siblings of adults with autism. Accordingly, the current study sought to: (1) illuminate factors that predict health-related quality of life, caregiver burden, and reported benefits in adult siblings of adults with autism, using a stress and coping framework and (2) compare outcomes of siblings of adults with autism (n = 31) to siblings of adults with Down syndrome (DS) (n = 54). For the within subject hypotheses, analyses were repeated within the DS group and an overall Disability group (n = 97). The Disability group consisted of participants in the Autism and Down syndrome groups plus twelve individuals in a mixed group of adult siblings of adults with DS who presented with co-morbid symptoms of autism. Variables were organized using The Adult Sibling Caregiver Conceptual Model (ASCCM) into three categories: antecedents (e.g., sibling relationship quality, problem behaviors of the disabled sibling), mediators (e.g., coping strategies, cognitive appraisal types), and psychosocial outcome variables (i.e., mental and physical health-related quality of life, caregiver burden, and reported benefits). For the within subject primary hypotheses, I posited a series of relationships between the antecedents and outcomes based on prior literature on demographic and individual difference predictors (e.g., siblings of adults with autism with fewer problem behaviors would have increased health-related quality of life [HRQOL], decreased caregiver burden, and increased reported benefits) and on stress and coping factors related to the burden of providing care for an individual with autism (e.g., greater use of avoidant coping strategies would be related to lower HRQOL, increased caregiver burden, and decreased reports of benefits). Exploratory hypotheses also were examined (e.g., being married would be associated with increased HRQOL, decreased burden, and increased reported benefits). The within-subject results indicated support for eight of the ten primary hypotheses and five of the six exploratory hypotheses when examined within at least one of the study groups: Autism, DS, or Disability. Overall, sibling caregivers, regardless of their sibling’s disability, reported more favorable psychosocial outcomes when demands were lower (e.g., less severe levels of problem behaviors, fewer autism symptoms exhibited by their disabled sibling, decreased additional pile-up stress), when resources were available to cope with stress (e.g., social support, respite care), and when healthy responses to stress were reported (e.g., use of emotion focused vs. avoidant coping strategies, use of challenge vs. threat appraisal types). Of note, reported benefits, which have rarely been examined in the autism literature, were strongly related to the quality of a sibling relationship across all study groups, and with the helpfulness of received services and perceived social support within the Autism group. The between subject hypotheses also were largely supported. As expected, compared to siblings of those with Down syndrome, siblings of those with autism demonstrated greater levels of caregiver burden and lower mental HRQOL. Moreover, there was a rank ordering in levels of caregiver burden across disability groups; siblings of adults with DS reported the lowest burden, siblings of adults with DS with symptoms of autism reported significantly higher levels of burden, and siblings of those with autism reported the most burden. The results imply that autism, either alone or co-morbid with another diagnosis, presents an increased risk of stress and caregiver burden, not only in parent caregivers, but also in sibling caregivers. Interestingly, there was also evidence for higher levels of stress related growth within the Autism group compared to the DS group. Future research will be needed to generalize the results of this study to broader samples of adult siblings while taking a life course perspective to assess changes in non-disabled siblings’ outcomes over time.