Online Program

Gender disparities in caregiving for individuals with Fragile X Syndrome

Tuesday, November 3, 2015

Rebecca Feinstein, Ph.D., L.C.S.W., Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Jerusalem, Israel
Harold A. Pollack, PhD, School of Social Service Administration, University of Chicago, Chicago, IL
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.

Learning Areas:

Chronic disease management and prevention
Public health or related research

Learning Objectives:
Discuss the caregiving needs of adults with Fragile X Syndrome. Identify the various roles of women as caregivers of adults with Fragile X Syndrome and why patterned gender roles present social and economic disparities for women.

Keyword(s): Caregivers, Gender

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a Researcher and Lecturer at the Paul Baerwald School of Social Work and Social Welfare at Hebrew University of Jerusalem and researcher on study, "Intergenerational caregiving transitions for individuals with intellectual disabilities" at the University of Chicago.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.