Neurodevelopmental Disorders: A Sibling’s Experiences and PerspectivesOriginal title: Trastornos en el Neurodesarrollo: Experiencias y perspectivas de un hermano
Original title: Trastornos en el Neurodesarrollo: Experiencias y perspectivas de un hermano
Student Thesis:
Student thesis
Thesis
Families with a member who has a neurodevelopmental disorder exhibit unique relational dynamics that impact all their members. Scientific literature has primarily focused on the experiences of parents or the diagnosed individual overlooking the perspectives and needs of those who grow up with a sibling with a disability, even though the sibling relationship directly influences their emotional, social, and personal development (Carranco, 2024; García, 2021). This lack of visibility creates a gap in the comprehensive understanding of family relationships within disability contexts.
This study aims to enrich existing literature by collecting and analyzing testimonies from individuals who grew up with a sibling with a neurodevelopmental disorder, thereby increasing awareness of their lived experiences, understanding the meanings they assign to
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their learning, emotions, and challenges will raise awareness within our community and foster greater empathy towards this population. The relevance lies in its contribution to the field of educational psychology by identifying the factors that shape these relationships, which can help develop future strategies for family support and educational intervention.
The research employed a qualitative methodology with a phenomenological approach. Through semi-structured interviews, the study sought to understand the subjective experiences of neurotypical individuals with siblings diagnosed, from their standpoint (Husserl, 2006). The process involved collecting, transcribing, and thematically analyzing the testimonies in order to identify relevant patterns and meanings that emerged from both the challenges and the learning experiences within the sibling relationship.
Findings reveal a dynamic and continuous adaptation process influenced by age, maturity, perspective, and life experiences. Despite the uniqueness of each narrative, the findings show visible and shared patterns in how neurotypical individuals understand, give meaning to, and experience this relationship with their sibling with a neurodevelopmental disorder in their lives:
- Understanding the diagnosis is a progressive, non-linear process, conditioned by birth order and the age at which the news is received.
- Grief appears as a constant redefinition of expectations rather than as a loss.
- Sibling relationships are ambivalent, where love, pride, and admiration coexist with
experiences of frustration, guilt, and sadness.
- Feelings of responsibility and protection coexist with experiences of emotional
invisibility within the family.
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- Daily routines, care, and adjustments are presented as "invisible barriers" that go unnoticed by others.
- High socioeconomic status plays a determining factor in family dynamics.
- Anticipation of future caregiving roles is silent, constant, and influences their personal
decisions.
- The participants' families did not identify a need to provide therapeutic support to this
population.
- Shared experiences in fraternal relationships foster values, socio-emotional skills, and
social commitments.
The results highlight the need to better understand the experiences of this population in order to strengthen professional and social support. The study also explores the potential benefits of therapeutic support, as well as the importance of assertive family communication to promote the overall well-being of individuals with a sibling who has a neurodevelopmental disorder. In addition to contributing to the existing literature, as a means of dissemination and awareness-building, a series of videos of their testimonials are being developed, to share these experiences and findings with a broader audience.
This study aims to enrich existing literature by collecting and analyzing testimonies from individuals who grew up with a sibling with a neurodevelopmental disorder, thereby increasing awareness of their lived experiences, understanding the meanings they assign to
7
their learning, emotions, and challenges will raise awareness within our community and foster greater empathy towards this population. The relevance lies in its contribution to the field of educational psychology by identifying the factors that shape these relationships, which can help develop future strategies for family support and educational intervention.
The research employed a qualitative methodology with a phenomenological approach. Through semi-structured interviews, the study sought to understand the subjective experiences of neurotypical individuals with siblings diagnosed, from their standpoint (Husserl, 2006). The process involved collecting, transcribing, and thematically analyzing the testimonies in order to identify relevant patterns and meanings that emerged from both the challenges and the learning experiences within the sibling relationship.
Findings reveal a dynamic and continuous adaptation process influenced by age, maturity, perspective, and life experiences. Despite the uniqueness of each narrative, the findings show visible and shared patterns in how neurotypical individuals understand, give meaning to, and experience this relationship with their sibling with a neurodevelopmental disorder in their lives:
- Understanding the diagnosis is a progressive, non-linear process, conditioned by birth order and the age at which the news is received.
- Grief appears as a constant redefinition of expectations rather than as a loss.
- Sibling relationships are ambivalent, where love, pride, and admiration coexist with
experiences of frustration, guilt, and sadness.
- Feelings of responsibility and protection coexist with experiences of emotional
invisibility within the family.
8
- Daily routines, care, and adjustments are presented as "invisible barriers" that go unnoticed by others.
- High socioeconomic status plays a determining factor in family dynamics.
- Anticipation of future caregiving roles is silent, constant, and influences their personal
decisions.
- The participants' families did not identify a need to provide therapeutic support to this
population.
- Shared experiences in fraternal relationships foster values, socio-emotional skills, and
social commitments.
The results highlight the need to better understand the experiences of this population in order to strengthen professional and social support. The study also explores the potential benefits of therapeutic support, as well as the importance of assertive family communication to promote the overall well-being of individuals with a sibling who has a neurodevelopmental disorder. In addition to contributing to the existing literature, as a means of dissemination and awareness-building, a series of videos of their testimonials are being developed, to share these experiences and findings with a broader audience.