I would like to express my sincere appreciation to all the people who participated in this research. Based on reflection on the data, core themes of experience and influences on experience were identified. Five core themes of the early adulthood experience of having a sibling with a developmental disability were identified.
This research can help health care providers working with the early adults and their families by increasing their understanding of the experience. A developmental disability causes functional deficits in at least three of the following: self-care, language,. Situational factors such as place and time of the interview may have influenced the results.
CHAPTER 2
Researchers have also examined the experience of having a sibling with developmental disabilities, focusing on childhood and adolescence (Smith, Elder, Storch, & Rowe, 2015). However, there is little literature available on early adult experiences of having a sibling with a developmental disability. In their study, they reported that 38% of siblings expected to become the primary caregivers of their siblings with developmental disabilities.
Arnold, Heller, and Kramer (2012) conducted a study on the support needs of individuals who have a sibling with a developmental disability. The literature review demonstrates the need for more research on early adults' experiences of having a sibling with a developmental disability. The researcher did not find any qualitative studies specifically about early adults who have a sibling with a developmental disability.
It was assumed that participants were accurately informed about the diagnosis of their sibling(s). The researcher also verbally shared information at the University of Mississippi Department of Psychology to recruit participants. Informed consent was obtained from the participant prior to the start of the interview (Appendix C).
This required the researcher to reflect on the participant's experiences and translate them into the researcher's words. After a separate analysis, the researcher and advisor jointly discussed the individual themes of the participants. The researcher then selected which themes, common among the participants, emerged as representative of the meaning of the.
She did not express any feelings of anger or bitterness towards the situation, only calling the experience "different." She had a positive view of her experience and her family's routine adaptations to complement her sister's needs, including the fact that she plays the role of an older sibling when she is actually younger than her sister. His brother lived at home with their father and was 20 years old at the time of the interview. His brother was working on getting a high school diploma at the time of the interview.
He said that he moved strictly for the purpose of a job and that it upset him to be so far away from his brother. Harley felt guilty for not being there to help his brother and be there for him. He wanted his brother to be able to gain independence to the best of his ability.
When describing his brother's ability to take care of himself, Harley said that he thought it was possible to live with his brother alone under his control. His brother had earned a high school diploma and an associate's degree and was employed at the time of the interview. Brandon reported that during his teenage years he felt guilty for being able to do things that he knew his brother could not do.
Brandon said he was worried about his brother living at home alone with his parents and no friends while Brandon. Brandon expressed that he has been thinking a lot about the future regarding his brother and his care. He said he and his family are working to increase his brother's independence and abilities, and he feels positive about those efforts.
He clearly stated that he is not embarrassed by his brother, his brother's diagnosis or. Brandon said he thought his childhood was normal and that his brother was normal to him. He remembered his mother trying to help him understand his brother's disability when he was younger.
The two variations on this theme were: that there was a lesson to be learned from their sibling and that others had something to learn from their experience. Some participants expressed that there is something for them to constantly learn from their sibling. Participants demonstrated their advocacy in two different ways: expressing concern and advocating for their sisters.
The participants expressed that they should not be fooled with a sibling, and with the expression that a sibling should not be underestimated. They defended their siblings' intelligence despite the fact that they were aware that their sibling had a developmental disability. I don't want to say it's a burden, but you know, I don't think he wants it.
And so you know, it's something we'll have to talk about in the near future, but it's not something we've talked about. It's in the back of my mind that if I have to, I still have to be able to provide for him if I have to, or help him. The participants also talked frequently with their sibling and reported a close bond with their sibling, despite varying physical distances between them.
They identified how their parents facilitated their relationship with their sibling, helped explain their sibling's disability to them, and modeled accommodations in their daily lives to help their sibling. sister with a development. Participants indicated that their perception of their and their sibling's lives as normal had influenced their early adulthood experience of having a sibling with a developmental disability. They described their sibling's perception and that their situation was their version of normal.
It was just-- I don't know how to explain it-- like, I think it was just normal, you know.
CHAPTER 6
Early adults who have siblings with developmental disabilities are able and willing to describe experiences. The purpose of the current study was to investigate the experience of having a sibling with a developmental disability from the perspective of early adults. The current study may add to professionals' understanding of early adults who have siblings with a. developmental disability by providing an alternative perspective to previously published research findings.
Five themes and two influences on the early adulthood experience of having a sibling with a developmental disability were identified as common. In practice, it could be helpful in alleviating the early adult sibling's stress if the parents discussed with them their plans and wishes for the future care of the sibling with developmental disabilities and asked the early adult for input into the plan. It would certainly be helpful for parents of early adults who have a sibling with developmental disabilities to be aware that some early adults. who have a sibling with a developmental disability, are uncertain about the future and would like to create a plan for their sibling's future.
Two influences on the early adulthood experience of having a sibling with a developmental disability emerged as common to all participants. The influences can contribute to the knowledge that this produces. professionals have and also understand their understanding of the experiences of young adults with a sibling with a developmental disability. Parents need to be aware that their approach to situations and their support affects the experience of young adults with a sibling with a developmental disability.
No other studies have been conducted to examine the subjective early adult experience of having a sibling with a developmental disability. Knowing the results of this study could help parents to better. to understand more about the experience of their own early adults who have a sibling with a developmental disability. The purpose of the current study was to explore the early adult experience of having a sibling with a developmental disability.
Using participants' own words, themes and influences of the experience of having a sibling with a developmental disability were identified.
DEVELOPMENTAL DISABILITY DEFINITION
ONLY INCLUDE THE FOLLOWING IF YOU ARE ONLY COLLECTING DATA FROM ADULTS By checking this box, I certify that I am 18 years of age or older. The purpose of this research project is to learn more about the experience of an early adult with a sibling with a developmental disability. Examples of developmental disabilities include: Down syndrome, autism spectrum disorders, fragile X syndrome, Williams syndrome, and Prader-Willi syndrome.
Other developmental disabilities are not listed here, but will be included in the study. You will be asked to provide basic information including your age and your sibling's diagnosis and then participate in an interview. Your phone number will be collected to contact you later if clarification of data is needed.
You may also be contacted at the end of all research and analysis to confirm that the writing accurately portrays your experiences. The results of the survey may be published, but your name will not be used. You can learn about the research results either by attending a presentation (researcher's thesis defense) and/or by requesting a copy of the results.
By participating in the interview, you indicate that you wish to participate in the study. If you start the study and decide that you do not want to complete the study, all you need to do is tell the researchers in person, by letter or by telephone (contact details listed above). If you have any questions, concerns, or reports about your rights as a research participant, please contact the IRB at or [email protected].
THE UNIVERSITY OF MISSISSIPPI
