Experiences of young people preparing to transition out of cluster foster care in South Africa

Abstract: Purpose. Research on young people transitioning out of care due to reaching the age of majority (referred to as care-leaving or aging out of care) is still emerging in South Africa. To date, almost all research on leaving care has focused on the transition out of residential care, with little attention to the transition out of foster care, including cluster foster care (roughly equivalent to group homes in other countries). This paper aims to describe the experiences of youth preparing to age out of cluster foster care in South Africa. Methods. Individual interviews were conducted with nine youth preparing to leave a cluster foster organization called Home from Home. In addition, a semi-structured focus group was run with six of their foster mothers. Findings. Thematic analysis generated four themes: the desire for independence; the centrality of meeting material and physical needs at the time of transition; the continuity of emotional care during the transition; and the supported development of the capacity for self-determination. Discussion. Self-determination theory, ambiguous loss and ubuntu (or interdependence) were found to be useful theories to interpret the findings. Recommendations are proposed to better prepare foster children for leaving care and for creating a social environment that is receptive to and conducive for foster care-leavers

Stakeholder cooperation to overcome challenges in orphan medicine development: The example of Duchenne muscular dystrophy

Duchenne muscular dystrophy is a rare, progressive, muscle-wasting disease leading to severe disability and premature death. Treatment is currently symptomatic, but several experimental therapies are in development. Implemented care standards, validated outcome measures correlating with clinical benefit, and comprehensive information about the natural history of the disease are essential for regulatory approval of any treatment. However, for Duchenne muscular dystrophy and other rare diseases, these requirements are not always in place when potential therapies enter the clinical trial phase. A cooperative effort of stakeholders in Duchenne muscular dystrophy-including representatives from patients' groups, academia, industry, and regulatory agencies-is aimed at addressing this shortfall by identifying strategies to overcome challenges, developing the tools needed, and collecting relevant data. An open and constructive dialogue among European stakeholders has positively affected development of treatments for Duchenne muscular dystrophy; this approach could serve as a paradigm for development of treatments for rare diseases in general

Stakeholder cooperation to overcome challenges in orphan medicine development: the example of Duchenne muscular dystrophy

Duchenne muscular dystrophy is a rare, progressive, muscle-wasting disease leading to severe disability and premature death. Treatment is currently symptomatic, but several experimental therapies are in development. Implemented care standards, validated outcome measures correlating with clinical benefit, and comprehensive information about the natural history of the disease are essential for regulatory approval of any treatment. However, for Duchenne muscular dystrophy and other rare diseases, these requirements are not always in place when potential therapies enter the clinical trial phase. A cooperative effort of stakeholders in Duchenne muscular dystrophy-including representatives from patients' groups, academia, industry, and regulatory agencies-is aimed at addressing this shortfall by identifying strategies to overcome challenges, developing the tools needed, and collecting relevant data. An open and constructive dialogue among European stakeholders has positively affected development of treatments for Duchenne muscular dystrophy; this approach could serve as a paradigm for development of treatments for rare diseases in general.status: publishe