Gender disparities in caregiving for individuals with Fragile X Syndrome

Background: Fragile X Syndrome (FXS) is the most common heritable cause of intellectual disability, affecting an estimated 1/3800 males and 1/2400 females in the U.S.  Female caregivers typically care for people with FXS and face numerous inequalities related to this gendered division of labor in the family. Qualitative interviews documented challenges of family caregiving over the life course.

Methods: Between May 2014 and February 2015, two focus groups (N=11) and 25 open-ended, phone interviews (45-60 minutes) were conducted with caregivers of adults living with FXS. Respondents were recruited from a Fragile X clinic, parent listserv, and Facebook group. With a grounded theory lens, data was analyzed by thematic and matrix coding using Nvivo.

Results: 36 caregivers of adults with FXS between the ages 17-59 were interviewed: mothers (N=29), fathers (N=3), sisters (N=2), brother (N=1), and an aunt (N=1). Twelve cared for two siblings with FXS.  Twenty-four women designated themselves as primary caregivers. Fourteen female caregivers quit or worked a part-time job to provide care; seven were single mothers; and ten reported caring for a disabled spouse or parent in addition to a person with FXS. Eight planned for daughters to assume caretaking roles in the future.

Conclusions: Women bear the dominant burdens within family division of roles caring for adults with FXS. Such patterned inequalities are repeated when female siblings of people with FXS are groomed to assume future caretaking roles. These caregiver transitions offer a lens to view intergenerational transmission of gender inequality and resulting policy challenges.