Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome

Authors: Kaylynn Shuleski, Laura Zalles, and Reymundo Lozano

Summarized by Kaylynn Shuleski

Summary

Given limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans. This involved identifying the reasons individuals with FXS continue to reside with family and the reservations caregivers have regarding future supports and living arrangements. We administered an anonymous online survey consisting of 34 questions assessing eligibility, living arrangements/supports, and future concerns. There was a total of 63 completed surveys that were eligible for analysis

Of the study population, we found that most individuals with FXS were affected with moderate intellectual and developmental disability (IDD) and multiple co-occurring behavioral conditions, but their health was generally good or excellent. Many of the individuals resided at home with family members due to a combination of parental and individual desire, as well as the inability to live independently. Our study found that most caregivers of individuals with FXS are generally concerned about multiple aspects of the individual’s future. Caregivers of younger individuals are the most concerned regarding the individual’s future, but also believe they have time before they need to plan or are unable to currently assess the support the individual will need in the future. Caregiver concern does seem to decrease as the individual with FXS ages, which may be due to a better understanding of the diagnosis or the increased functional skills and independence level of older individuals.

We found that caregivers are generally concerned about multiple aspects of the individual affected by FXS’s future. Factors such as the severity of IDD and the number of co-occurring behavioral conditions did not have an impact on the overall level of concern experienced by caregivers. However, when we explored individual concern aspects and compared them to age groups, we saw the level of caregiver concern for five out of six factors decreased as the age group of the individual affected by FXS increased. The only factor where the level of concern did not decrease was regarding the individual with FXS’ transition to different supports and living arrangements. This result stresses the sentiment held by caregivers, that regardless of the amount of planning they do or the number of supports in place, they are unable to predict how the FXS individual will adjust to these transitions.

There was also an observed decrease in the caregiver’s concern regarding the future as the individual with FXS’ overall dependence decreased. This shows that caregivers of more independent individuals, or those who have achieved set functional skills, are less likely to be concerned about the future. Another interesting result was that the level of concern regarding future financial support did not differ based on the amount of annual household income or the number of financial resources put in place. This finding is well represented by the free response quote, “Never enough money to feel comfortable”, showing that no amount of financial support can fully eliminate a caregiver’s concern. This may represent the idea that it is not a question about the cost of currently available resources, but rather the quality, quantity, and availability that needs to be addressed.

Why This Matters

The results of this study suggest that better understanding of an individual’s FXS diagnosis and greater achieved independence by the individual can relieve some of the concern experienced by caregivers. While caregivers remain concerned about multiple aspects of the future, the study highlights the importance of establishing resources early in the individual’s life as it provides time for both the individual with FXS to adjust as well as the caregiver to make any necessary adjustments. Ultimately, early intervention and establishment of support for individuals affected by FXS can play a large role in alleviating some caregivers’ concerns for the future as well as assist in the transition for individuals with FXS.

Next Steps

One future direction for the study could be to explore the community of individuals currently residing in out-of-home living arrangements. It would be helpful to explore the factors considered and the challenges faced by these caregivers when they were searching. It would also be interesting to assess these caregivers’ concerns given that the individual is in an established residential setting. Future studies could also distribute the survey to both caregivers of non-FXS related individuals with IDD and individuals affected by FXS. This could identify specific differences between these two populations, as they are often equated in research without the consideration of common FXS-related comorbidities.

Acknowledgements

The authors would like to thank all the participants in our study as well as the National Fragile X Foundation.

FOR MORE DETAILS VISIT:

Read the full publication, Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome, in the Genes Special Issue Epigenetics of Fragile X and Other Neurodevelopmental Disorders.

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