Daniel Mruzek - Supports for Siblings of Children with Autism Spectrum Disorder: Parents...
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posters4research.com” INTRODUCTION Recommendations and Future Directions Supports for Siblings of Children with Autism Spectrum Disorder: Parents’ Perspectives Daniel W. Mruzek, Dawn Volger-Elias, Elizabeth Baltus Hebert, Jacalyn Yingling, Beth Russ, Lorena Millan, Virginia Yanez-Fontenla, & Erin McDermott University of Rochester Medical Center, Rochester, NY METHODS RESULTS Recommendations and Next Steps: Based on the results of this focus group, it is recommended that school districts and other agencies consider the following practices: (1) development of structured support groups for siblings; (2) Create increased opportunities for inclusive social and recreational activities for children with ASD and siblings; (3) Consider carefully the quality of supports for students with ASD as they make educational transitions, especially those that require new buildings or routines (e.g., start of middle school); (4) educate all students and school community about ASD and consider including siblings as potential leaders in that process. Additional research, including focus groups, should include families from a broader range of cultural groups (e.g. urban or suburban district). Next steps may include study of impact of recommended next steps (above) on well-being of siblings, children with ASD and their families. Purpose and Objectives This project was supported by a LEND training grant from the US Maternal and Child Health Bureau Autism spectrum disorder (ASD) is a developmental disability characterized by deficits in social communication and the presence of behavioral characteristics (American Psychiatric Association, 2013). The CDC reports a 2%–18% chance for parents of a child with ASD to have a second child who is also affected. Having a sibling with ASD can have both positive and negative impacts on development, adjustment, and functioning. There has been evidence of increased psychological problems in siblings of children with ASD (e.g., Benson & Karlof, 2008, Petalas et al., 2009). Siblings of children with ASD have been reported by parents to have more emotional problems and fewer prosocial behaviors than the general population (Griffith, Hastings, Petalas, 2014). In contrast, there have been reports of positive effects of having a sibling with ASD, such as increased prosocial behavior (Nielson et al., 2012). There may be subgroups of siblings who are at greater risk for emotional and behavioral difficulties at different points during childhood (Giallo et al., 2014). Within families there are many factors that likely impact the adjustment of a child with a sibling who has ASD. This study will examine parents’ perceived positive and negative impact of having a sibling with ASD. Additionally, it will investigate the availability and perceived helpfulness of school-based supports and resources for siblings of children with ASD. The purpose of this study was to learn about relationships between children with autism and their siblings and to identify themes about parenting and sibling relationships for families with a child on the autism spectrum. Specific research objectives included identification of parents’ perspectives on the following topics: (1) Sibling understanding of autism; (2) Relationship characteristics between siblings; (3) Individual, parenting, and sibling supports. Data will be used to inform next-step research and current practices related to the development of sibling supports for families with a child on the autism spectrum. Qualitative research methods were used to identify themes by analyzing narrative data gathered through a detailed focus group discussion with parents of children with ASD and at least one additional child. Procedure : A 1.5 hour focus group was conducted in a private meeting room of the elementary school of the participating school district. Consent was established and confidentiality maintained per approved institutional human subjects review board protocol. A brief discussion guide, developed out of a careful review of current literature on needs of siblings of children with ASD, as well as by brainstorming sessions by the investigators, was used to guide the discussion. Focus group was audio recorded and later transcribed. Topics included parents’ perceptions of a) description of family; b) relationships among siblings; c) positive and negative aspects of having a sibling with autism; d) suggestions for school and other agents to support parents and your children. Data were also collected through a questionnaire about demographics form completed at the close of the session. Validity : At the beginning of the focus group session, the facilitator emphasized that all participants’ experiences and opinions were considered equally important, and that all were invited to share their experiences and opinions freely. Participants were reminded that there are no “right” or “wrong” comments in any of the topic areas. Participants were asked to minimize “side discussions” so that all comments could be heard by the researchers. The facilitator adhered closely to the topic areas identified in the discussion guide, and the topic areas were also clearly displayed at the front of the room for added visual support. To aid in subsequent analysis, two separate researchers maintained handwritten notes throughout the session, identifying the speaker of each comment. Audio recording was reviewed for accuracy. Data Analysis : Qualitative methods were used for data analysis. Upon completion of the focus group, investigators immediately processed their initial impressions of potential themes. An interdisciplinary group of investigators each reviewed the transcript independently for the identification of initial codes. Transcript was analyzed using Nvivo 10 followed by discussion to identify themes and illustrative quotes. The investigators reached consensus regarding key themes. Recruitment and Participants School records were reviewed by the Special Education and Student Services Director of a rural, upstate NY school district to verify the child’s educational classification of “Autism.” Diagnosis of ASD was confirmed by parent/guardian through completion of a participant questionnaire prior to enrollment in a focus group. Parents/guardians of the children were then invited by school personnel to participate in the focus group. Participants included 6 mothers and 2 fathers with school-age children with autism spectrum disorder (ASD) and one or more additional children (i.e., siblings aged 2 – 12; 3 brothers, 9 sisters) representing 7 families (one husband and wife team participated). All 8 participants self-identified as Caucasian. Reported highest level of education were the following: 2 – high school; 1 – some college; 3 – college degree; 2 – graduate or post professional degree. Reported marital status were as follows: 6 married, 2 single/divorced/ widowed, 1 had a domestic partner. THEME 1 Role of siblings The role of siblings varied within and across families. Variability in roles seemed to be dependent on factors such as the age difference between the siblings, behavioral challenges, and other resources available to the family. Identified roles include the following: -Playmate: Siblings often took on the role of a playmate, which is a typical sibling role in many families. The families did, however, describe the unique nature of play between their siblings. “It’s kind of slow between them but if you find something that they can do together that he’s interested in, they’re great. But for the most part he does his own thing but it’s coming.” -Caregiver: Parents described the role of caregiver that is often taken on by their child without autism. Some families talked about assigning their children this role at times, whereas other siblings seemed to naturally take on caregiving within the family. “She almost has taken over the mother position. So she watches him like a hawk. She is, she rides him sometimes terrible. She’ll be like ‘don’t do this!’ and it’s like, really? Who’s the mother here?” -Advocate: Empowered to Educate of others about autism Parents described how having a sibling with autism can have impact on advocacy in the community. “She’s already been talking to me about how she knows a lot about autism and how she has stuff to contribute to the group.” THEME 2 Level of Understanding of Autism Level of understanding about autism by peers, teachers and others in the community impacted the siblings. - Siblings: Good understanding by sibling led them to educate other children; poor understanding led to frustration and anger “She really did not get it. She almost was very angry for a long time because she couldn’t understand. She thought he didn’t like her.” “I think she’s kind of intuitively understands that everybody’s different so she kind of accepts him for the most part.” - Peers: Poor understanding by children at school led to bullying “There were some boys… that started making fun of my daughter. Yeah, it broke my heart. In this class was one of my other daughter’s best friends and she … spoke up and said “Hey, that’s not nice. You shouldn’t do something like that.” - Broader School Community: Poor understanding by the school community interfered with smooth transitions and consistent expectations for children with autism. “I think this year the school district took a big step in trying to create more awareness.” THEME 3 Need for Supports Parents felt that support groups for siblings, such as the nationally known SibShops, were very helpful. There was discussion about how supporting the sibling can help the whole family. - Siblings- Enjoy activities designed for all children, including typically developing children and children with ASD “I think support is good for the siblings. It is also good for the parents.” - Parents- Identified need for increased supports in their rural community; long drives made some opportunities undoable. Also, the parents described the lack of supports and programs in their rural area. Discussion centered on how it was important for parents to share information with each other, and how that connection would help them to access or find appropriate and innovative resources, especially during transition years. “A lot of times you’re working in isolation trying different things but this would be great for a lot of parents.”
description
This qualitative study examined parent perceptions of relationships between children with autism and their siblings, as well as parent-identified support needs. Eight families participated in a focus group and discussed relationship between siblings, social impact of having a sibling with ASD, and helpful supports for the individual, siblings and parents.
Transcript of Daniel Mruzek - Supports for Siblings of Children with Autism Spectrum Disorder: Parents...
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INTRODUCTION
Recommendations and Future Directions
Supports for Siblings of Children with Autism Spectrum Disorder:
Parents Perspectives
Daniel W. Mruzek, Dawn Volger-Elias, Elizabeth Baltus Hebert, Jacalyn Yingling, Beth Russ, Lorena Millan,
Virginia Yanez-Fontenla, & Erin McDermott
University of Rochester Medical Center, Rochester, NY
METHODS RESULTS
Recommendations and Next Steps: Based on the results of this focus group, it is recommended that school districts and other agencies consider the following practices: (1) development of structured support groups for siblings; (2) Create increased opportunities for inclusive social and recreational activities for children with ASD and siblings; (3) Consider carefully the quality of supports for students with ASD as they make educational transitions, especially those that require new buildings or routines (e.g., start of middle school); (4) educate all students and school community about ASD and consider including siblings as potential leaders in that process. Additional research, including focus groups, should include families from a broader range of cultural groups (e.g. urban or suburban district). Next steps may include study of impact of recommended next steps (above) on well-being of siblings, children with ASD and their families.
Purpose and Objectives
This project was supported by a LEND training grant from the US Maternal and Child Health Bureau
Autism spectrum disorder (ASD) is a developmental disability characterized by deficits in social communication and the presence of behavioral characteristics (American Psychiatric Association, 2013). The CDC reports a 2%18% chance for parents of a child with ASD to have a second child who is also affected. Having a sibling with ASD can have both positive and negative impacts on development, adjustment, and functioning.
There has been evidence of increased psychological problems in siblings of children with ASD (e.g., Benson & Karlof, 2008, Petalas et al., 2009). Siblings of children with ASD have been reported by parents to have more emotional problems and fewer prosocial behaviors than the general population (Griffith, Hastings, Petalas, 2014). In contrast, there have been reports of positive effects of having a sibling with ASD, such as increased prosocial behavior (Nielson et al., 2012). There may be subgroups of siblings who are at greater risk for emotional and behavioral difficulties at different points during childhood (Giallo et al., 2014).
Within families there are many factors that likely impact the adjustment of a child with a sibling who has ASD. This study will examine parents perceived positive and negative impact of having a sibling with ASD. Additionally, it will investigate the availability and perceived helpfulness of school-based supports and resources for siblings of children with ASD.
The purpose of this study was to learn about relationships between children with autism and their siblings and to identify themes about parenting and sibling relationships for families with a child on the autism spectrum. Specific research objectives included identification of parents perspectives on the following topics: (1) Sibling understanding of autism; (2) Relationship characteristics between siblings; (3) Individual, parenting, and sibling supports. Data will be used to inform next-step research and current practices related to the development of sibling supports for families with a child on the autism spectrum.
Qualitative research methods were used to identify themes by analyzing narrative data gathered through a detailed focus group discussion with parents of children with ASD and at least one additional child. Procedure: A 1.5 hour focus group was conducted in a private meeting room of the elementary school of the participating school district. Consent was established and confidentiality maintained per approved institutional human subjects review board protocol. A brief discussion guide, developed out of a careful review of current literature on needs of siblings of children with ASD, as well as by brainstorming sessions by the investigators, was used to guide the discussion. Focus group was audio recorded and later transcribed. Topics included parents perceptions of a) description of family; b) relationships among siblings; c) positive and negative aspects of having a sibling with autism; d) suggestions for school and other agents to support parents and your children. Data were also collected through a questionnaire about demographics form completed at the close of the session. Validity: At the beginning of the focus group session, the facilitator emphasized that all participants experiences and opinions were considered equally important, and that all were invited to share their experiences and opinions freely. Participants were reminded that there are no right or wrong comments in any of the topic areas. Participants were asked to minimize side discussions so that all comments could be heard by the researchers. The facilitator adhered closely to the topic areas identified in the discussion guide, and the topic areas were also clearly displayed at the front of the room for added visual support. To aid in subsequent analysis, two separate researchers maintained handwritten notes throughout the session, identifying the speaker of each comment. Audio recording was reviewed for accuracy. Data Analysis: Qualitative methods were used for data analysis. Upon completion of the focus group, investigators immediately processed their initial impressions of potential themes. An interdisciplinary group of investigators each reviewed the transcript independently for the identification of initial codes. Transcript was analyzed using Nvivo 10 followed by discussion to identify themes and illustrative quotes. The investigators reached consensus regarding key themes.
Recruitment and Participants School records were reviewed by the Special Education and Student Services Director of a rural, upstate NY school district to verify the childs educational classification of Autism. Diagnosis of ASD was confirmed by parent/guardian through completion of a participant questionnaire prior to enrollment in a focus group. Parents/guardians of the children were then invited by school personnel to participate in the focus group. Participants included 6 mothers and 2 fathers with school-age children with autism spectrum disorder (ASD) and one or more additional children (i.e., siblings aged 2 12; 3 brothers, 9 sisters) representing 7 families (one husband and wife team participated). All 8 participants self-identified as Caucasian. Reported highest level of education were the following: 2 high school; 1 some college; 3 college degree; 2 graduate or post professional degree. Reported marital status were as follows: 6 married, 2 single/divorced/widowed, 1 had a domestic partner.
THEME 1 Role of siblings The role of siblings varied within and across families. Variability in roles seemed to be dependent on factors such as the age difference between the siblings, behavioral challenges, and other resources available to the family. Identified roles include the following: -Playmate: Siblings often took on the role of a playmate, which is a typical sibling role in many families. The families did, however, describe the unique nature of play between their siblings. Its kind of slow between them but if you find something that they can do together that hes interested in, theyre great. But for the most part he does his own thing but its coming. -Caregiver: Parents described the role of caregiver that is often taken on by their child without autism. Some families talked about assigning their children this role at times, whereas other siblings seemed to naturally take on caregiving within the family. She almost has taken over the mother position. So she watches him like a hawk. She is, she rides him sometimes terrible. Shell be like dont do this! and its like, really? Whos the mother here? -Advocate: Empowered to Educate of others about autism Parents described how having a sibling with autism can have impact on advocacy in the community. Shes already been talking to me about how she knows a lot about autism and how she has stuff to contribute to the group.
THEME 2 Level of Understanding of Autism Level of understanding about autism by peers, teachers and others in the community impacted the siblings. - Siblings: Good understanding by sibling led them to educate other children; poor understanding led to frustration and anger She really did not get it. She almost was very angry for a long time because she couldnt understand. She thought he didnt like her. I think shes kind of intuitively understands that everybodys different so she kind of accepts him for the most part. - Peers: Poor understanding by children at school led to bullying There were some boys that started making fun of my daughter. Yeah, it broke my heart. In this class was one of my other daughters best friends and she spoke up and said Hey, thats not nice. You shouldnt do something like that. - Broader School Community: Poor understanding by the school community interfered with smooth transitions and consistent expectations for children with autism. I think this year the school district took a big step in trying to create more awareness.
THEME 3 Need for Supports Parents felt that support groups for siblings, such as the nationally known SibShops, were very helpful. There was discussion about how supporting the sibling can help the whole family. - Siblings- Enjoy activities designed for all children, including typically developing children and children with ASD I think support is good for the siblings. It is also good for the parents. - Parents- Identified need for increased supports in their rural community; long drives made some opportunities undoable. Also, the parents
described the lack of supports and programs in their rural area. Discussion centered on how it was important for parents to share information with each other, and how that connection would help them to access or find appropriate and innovative resources, especially during transition years.
A lot of times youre working in isolation trying different things but this would be great for a lot of parents.
