About Our Research

Factors Influencing the Trajectory of Independent Living Skills and Self-Management Behaviors in Adolescents and Young Adults with Spina Bifida (SB)

What is SB and how does it impact people?

SB is a condition people are born with that causes different levels of disability. This condition does not go away, and it is complex, so it is important that young people with SB learn independent living skills (e.g., problem solving, managing money, and household tasks) and condition self-management (e.g., knowing about SB, how to prevent complications, and taking medications). The goal is that young people with SB will become as independent as possible as they grow up.

Want to learn more about the development of independent living skills and self-management behaviors in young people with SB?

The Principal Investigator (PI) of the FamilyWISE research lab, Dr. Monique Ridosh, has conducted extensive research and published several papers on this topic! This website will give you information about several studies which included information collected over several years involving questionnaires, interviews, and observations of 99 adolescents and young adults ages 18-27 living with SB and their families. Data were collected from each participant and their family at two-year intervals by Dr. Grayson Holmbeck, PI of the CHATS lab.

Please note, sometimes researchers collect so much data during the course of a large study that it is too much to report in one publication. We have included three publications below that have resulted from this larger study. Please click through the drop-down menus below to learn more about demographic factors, contextual factors, and family-related factors that impact the trajectory (or development) of independent living skills and self-management behaviors for young adults living with SB and their families. For more information about research conducted by Dr. Ridosh see her bibliography linked here.

Why does this research matter?

It is helpful to know if different groups of people have different levels of growth when it comes to SB self-management and independent living skills. We can study these groups to better understand why some adolescents and young adults may get better at independent living skills and SB self-management over time and why others may struggle more so we can figure out how to best support families and young people with SB as they become adults!

Check out the drop-down menus below to learn about three studies we conducted that are related to this topic.

Demographic Factors

What was the purpose of this study?

To look at demographic factors like age, gender, race, ethnicity, and income that might impact the development/growth of independent living skills and self-management behaviors for youth with SB.

What are some key takeaways?

Growth in SB self-management depended on age, sex, and race/ ethnicity, but not income:

Youth from all different backgrounds showed self-management growth as they got older

Males had more self-management growth in this study (at ages 18-27) while other studies have shown that females tend to have more self-management growth when they are younger (before age 18)

Black participants showed the most self-management growth and Hispanic/ Latino youth showed the least self-management growth in this study

Self-management growth over time was not different based on income but youth from higher income families tended to have higher self-management than lower income families and that stayed the same over time

Where can I find this publication if I want to read more?

Click here!

Contextual Factors

What was the purpose of this study?

To look at contextual factors like socioeconomic status, condition-related factors, and neuropsychological (brain, nervous system, and mind) factors that might impact the development/growth of independent living skills and self-management behaviors for youth with SB.

What are some key takeaways?

On average, all youth had growth in self-management over time.
At age 18, youth had higher levels of self-management if they:
- Did not have a shunt
- Had less severe lesions
- Had better executive function
- Had higher socioeconomic status
Youth in the groups mentioned above continued to have higher levels of self-management over time than their peers with shunts, more severe lesions, poor executive function, and low socioeconomic status.

Where can I find this publication if I want to read more?

Click here!

Family-Related Factors

What was the purpose of this study?

To look at family-related factors, like family cohesion (getting along), conflict, stress, and support, that might impact the development/growth of independent living skills and self-management behaviors for youth with SB.

What are some key takeaways?

Family-related factors are important factors that can impact growth in self-management:

Youth from families with higher cohesion (getting along) had higher levels of self-management

When parents experienced more stress events, youth showed growth in self-management over time

Family conflict and support did not seem to impact levels of self-management in this study

Sometimes findings are surprising!

It was unexpected that higher stress events would be associated with more self-management growth and that family conflict and support did not seem to make a significant difference in self-management growth.

So, what does this mean?

There could be lots of reasons that explain these findings, but more research is needed to figure out what they are.

One thing we plan to try in our lab is using new ways to collect data! For example, in this study, families answered questions and were observed several times over several years. This helps us know what is happening over time but does not tell us as much about what day-to-day life looks like. We plan to use an app to ask families questions about self-management in real-time as they are living their daily lives to see if our findings are any different. Stay tuned!

Where can I find this publication if I want to read more?

Click here!

Testing a Self-Management and Independence Scale for Adolescents and Young Adults with Spina Bifida

Have you ever wondered how researchers are able to draw conclusions about complicated concepts?

One way to do this is by using questionnaires or scales to help turn complicated concepts into numbers. With enough numbers (or a large enough dataset), patterns start to show up that can teach us more about what might be happening.

How do researchers know they are using a good questionnaire (or scale) for a study?

Scales are created to measure specific concepts or ideas (e.g., independence or self-management) in specific groups of people (e.g., adolescents and young adults with spina bifida). When a scale is first developed, tests called psychometric tests need to be done to see how well a scale measures what it is supposed to and if it will reliably measure that concept over and over again. Sometimes researchers will adapt a scale that already exists to work better for their research (i.e., to use it for a different group of people or to measure a concept a little bit differently). When researchers plan to use a scale in a different way, those tests need to be done again to make sure the scale is going to be a good fit.

What scale can be used to measure self-management and independence in adolescents and young adults with SB?

The AMIS II is a scale used to measure self-management and independence behaviors and can be used in different types of chronic health conditions. In 2013, a team of researchers worked together to adapt this scale into a self-report version known as the AMIS II SR.

The version of the AMIS II SR created for the SB community has 36 items (or questions) prompting adolescents and young adults with SB answer how much help they need doing independent living and self-management behaviors (like doing laundry or catheterizing themselves) on a scale from 1 (meaning they never or rarely do the task on their own) to 7 (meaning they almost always do the task on their own). The last question asks about how satisfied a person is with their level of independence.

Testing the AMIS II SR

The Principal Investigator (PI) of the FamilyWISE research lab, Dr. Monique Ridosh, led a research team that tested a self-report version of the Adolescent/ Young Adult Self-Management and Independence Scale (AMIS II SR). Please click on the drop-down menu below to learn more about this study!

Check out the drop-down menu below to learn about a study we conducted that is related to this topic.

AMIS II SR Preliminary Psychometric Testing

What was the purpose of this study?

The purpose of this study was to test if a self-management scale called the Adolescent/ Young Adult Self-Management and Independence Self-Report Scale (AMIS-II SR) adequately measures the concepts it is supposed to measure reliably over time.

Who participated in this study?

This scale was tested with a group of 159 adolescents and adults ages 13-38 living with SB.

Key takeaways:

This study used a large, diverse sample
The AMIS-II SR is a valid and reliable scale for measuring self-management and independence in adolescents and adults with SB
This scale may be helpful for researchers trying to understand self-management and independent living skills as well as healthcare providers who want to identify their patients' level of self-management and independence in order to support growth over time