Date of Completion

5-10-2020

Embargo Period

5-7-2020

Advisors

Dr. Caitlin Lombardi, Dr. Laura Mauldin

Field of Study

Human Development and Family Studies

Degree

Master of Arts

Open Access

Open Access

Abstract

The current study examined parents’ reports of change in the parent-child relationship and family functioning following the onset of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) in their child. Research questions explored 1) how families’ day-to-day lives and functioning changed since the onset and 2) what challenges the families faced in raising a child with PANS/PANDAS. Research was conducted in two phases: narrative thematic analyses of online parent forum threads followed by semi-structured interviews with parents. Four primary themes were compiled from analyses of both data sources: Determinants of Family Functioning; Close Relationships; Routines and Daily Life; and Family Emotional Well-Being.

It was found that depending on the state of the child (i.e., well or in flare/exacerbation) the family’s level of functioning fluctuated. Also impacting family functioning was lack of support from the medical community, child’s school system, and from extended family and friends. The marital relationship was found to be greatly impacted, in addition to strains in the parent-child and sibling relationships. Magnified by the uncertainty that surrounds the experience, parents expressed feelings of caregiver burden which often included a transition out of a job to full-time caregiver. Analyses also revealed frequent use of language indicative of trauma to illustrate the experience. The use of trauma metaphors supports the notion that the ability to maintain family functioning is not solely a factor of resilience or preparedness and is unlike that of most childhood chronic illnesses.

Major Advisor

Dr. Maria LaRusso

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