Abstracts Category : Other

Journey of Fathers Following their Child???s Fragile X Diagnosis: Support Seeking Behaviors of Fathers

by Aman Mann

Studies show that fathers of children with a disability or chronic illness experience significant psychological impact. Appropriate support has shown to improve their well-being and that of their child. Despite these studies, the needs of these fathers are continually overlooked in healthcare settings. The purpose of this study was to understand the father???s experience receiving a fragile X syndrome (FXS) diagnosis for their child, focusing on their support seeking behaviors and their satisfaction with the supports available. We used an anonymous online survey and received 32 responses. The majority of fathers were satisfied with their experience with medical professionals. However, 15.7% of fathers were dissatisfied with their experience. We found that fathers want (1) more access to FXS information, specialists and local resources, and (2) specialized support from family, friends, other FXS families and FXS-related organizations. Healthcare providers can meet the needs of the fathers by (1) increasing awareness and education of FXS and FXS-related resources, (2) assessing both parents level of understanding, addressing their questions and concerns, and providing psychosocial support, and (3) acknowledging the fathers role, discussing the impact on them when receiving a diagnosis for their child and providing referrals to appropriate support resources. Support organizations can also meet fathers??? needs by (1) creating literature tailored to fathers, (2) encouraging more father-related activities in support groups, and (3) creating a network to connect fathers to other fathers. With the support of this data, we recommend implementation of these suggestions in order to address and meet the individual needs of fathers of children diagnosed with FXS, and support them through their unique journey as fathers.