Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
MULTIFILE
Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
MULTIFILE
PurposeAll entrepreneurs interact simultaneously with multiple entrepreneurial contexts throughout their entrepreneurial journey. This conceptual paper has two central aims: (1) it synthesises the current literature on gender and entrepreneurship, and (2) it increases our understanding of how gender norms, contextual embeddedness and (in)equality mechanisms interact within contexts. Illustrative contexts that are discussed include entrepreneurship education, business networks and finance.Design/methodology/approachThis conceptual paper draws upon extant literature to develop its proposed conceptual framework. It provides suggestions for systemic policy interventions as well as pointing to promising paths for future research.FindingsA literature-generated conceptual framework is developed to explain and address the systemic barriers faced by opportunity-driven women as they engage in entrepreneurial contexts. This conceptual framework visualises the interplay between gender norms, contextual embeddedness and inequality mechanisms to explain systemic disparities. An extra dimension is integrated in the framework to account for the power of agency within women and with others, whereby agency, either individually or collectively, may disrupt and subvert the current interplay with inequality mechanisms.Originality/valueThis work advances understanding of the underrepresentation of women entrepreneurs. The paper offers a conceptual framework that provides policymakers with a useful tool to understand how to intervene and increase contextual embeddedness for all entrepreneurs. Additionally, this paper suggests moving beyond “fixing” women entrepreneurs and points towards disrupting systemic disparities to accomplish this contextual embeddedness for all entrepreneurs. By doing so, this research adds to academic knowledge on the construction and reconstruction of gender in the field of entrepreneurship.
