Having a Sibling with a Developmental Disability

Quick Overview

This study explores the early adulthood experience of individuals with a sibling with a developmental disability. The study found five major themes: lessons learned, protective nature, thoughts about the future, intimacy with siblings, and pragmatism. Participants expressed gratitude for the lessons learned from their siblings and believed that others could learn from their experiences as well. They also demonstrated protectiveness towards their siblings and advocated on their behalf. Participants discussed their contemplations on the future, including financial responsibility, living arrangements, having children, and managing future care. They reported an intimate relationship with their siblings and displayed a pragmatic approach to life. The study highlights the importance of parental influence and the need for interventions and support for early adults with siblings with developmental disabilities.

Sibling relationships are unique and can be characterized by shared experiences, genetics, and cultural background. With changes in family dynamics and an increase in developmental disabilities, it is important to understand the experiences of individuals who have a sibling with a developmental disability during early adulthood. This talk presents the findings of a qualitative study that explored the early adult experience of having a sibling with a developmental disability.

The Importance of Early Adulthood

Early adulthood is a crucial developmental period characterized by psychosocial and cognitive transitions. These transitions include acknowledging and accepting one’s own emotions, becoming self-reliant in decision-making, establishing interpersonal relationships, and developing a sense of purpose and identity. It is during this period that individuals with a sibling with a developmental disability navigate these transitions while also managing their relationship with their sibling.

The Growing Prevalence of Developmental Disabilities

The prevalence of developmental disabilities, including intellectual disability, autism spectrum disorder, and other developmental delays, has been increasing. This is due to factors such as deinstitutionalization, improved life expectancy, and better diagnosis and awareness. As a result, more individuals are living through early adulthood with a sibling who has a developmental disability.

The Study Design and Methodology

This study used a qualitative research design, specifically the hermeneutic phenomenological approach. Six participants between the ages of 21 and 35, who had a sibling with a diagnosed developmental disability, were interviewed. The interviews were transcribed and analyzed using thematic analysis.

Themes and Findings

The study identified five major themes that emerged from the interviews:

1. Lessons Learned: Participants expressed gratitude for the lessons they learned from their sibling with a developmental disability. They also believed that others could learn from their own experiences.
2. Protective: Participants demonstrated their protectiveness by expressing concern for their sibling’s safety and advocating on their behalf.
3. The Future: Participants discussed their contemplations on their future life and their future life with their sibling, including financial responsibility, living arrangements, having children, and managing future care.
4. Intimacy with Siblings: Participants reported having an intimate relationship with their sibling, characterized by frequent communication and a close bond.
5. Pragmatism: Participants exhibited a pragmatic approach to life, accepting both the good and the bad. They made accommodations to fit their sibling’s needs and recognized that life is not perfect.

Implications and Recommendations

The findings of this study have implications for interventions and practice. It is important for early adults to feel supported and understood by others who are knowledgeable about their experiences. Professionals who interact with early adults should help them advocate for their sibling and provide guidance on how to handle behaviors. Parents play a significant role in shaping their children’s experiences and should be aware of their influence. They should initiate conversations about the future and involve their early adult children in planning and decision-making.

Comparison with Adolescent Experiences

The findings of this study were compared with previous research on the adolescent experience of having a sibling with a developmental disability, specifically Angelman syndrome. The comparison revealed similarities in themes such as lessons learned, protectiveness, thoughts of the future, intimacy with siblings, and pragmatism. These similarities suggest that the experiences of early adults and adolescents with a sibling with a developmental disability share commonalities and may benefit from similar interventions and support.

Future Research

Further research is needed to explore the experiences of early adults with a sibling with a developmental disability from a wider range of ethnic and socioeconomic backgrounds. Longitudinal studies could provide valuable insights into the changes and similarities in experiences throughout different developmental stages. Additionally, research with larger sample sizes and a broader range of diagnoses could enhance our understanding of the early adulthood experience.

In conclusion, having a sibling with a developmental disability during early adulthood presents unique challenges and opportunities for growth. Understanding the experiences of individuals in this situation can inform interventions and support systems to better meet their needs. By acknowledging the importance of early adulthood and the influence of parents, professionals, and siblings, we can create a more inclusive and supportive environment for individuals with a sibling with a developmental disability.