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Disruptions and Adaptations in Family Functioning: A Study of Families’ Experiences with PANS/PANDAS

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Abstract

The current study examined changes in family functioning following the onset of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). A social-ecological and systems framework was used to investigate (1) how families’ day-to-day lives and functioning evolved since the onset of PANS/PANDAS, (2) challenges families faced in raising a child with this condition, (3) changes in family sub-systems, and (4) sources of support. Qualitative research was conducted in two phases: narrative thematic analyses of online parent forum threads followed by semi-structured interviews with nine families. Five primary themes are presented: (a) Child Symptoms and Clinical Course, (b) Family Resources and Institutional Barriers, (c) Close Relationships (sub-themes: family sub-systems and support network – extended family and friends), (d) Routines and Daily Life, and (e) 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. Family functioning was also found to be impacted by lack of support from the medical community, child’s school system, family and friends. The marital relationship was found to be greatly impacted, in addition to strains in the parent-child and sibling relationships. Analyses revealed that the severity of the neuropsychiatric symptoms was a particularly challenging aspect of PANS/PANDAS with many families using trauma metaphors to describe their experience. The impact on the emotional well-being of the family entails a level of suffering that diverges from the literature on the impact of other childhood chronic illness on family functioning.

Highlights

  • Examined family functioning utilizing online parent forums and nine semi-structured interviews with PANS/PANDAS families.

  • Unpredictability & relapsing-remitting nature of neuropsychiatric symptoms cause significant disruptions to daily life.

  • Financial strain, social isolation, and lack of support from schools and medical institutions transform family functioning.

  • Parents’ frequent use of trauma metaphors to describe experience diverges from literature on other chronic illnesses.

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Funding

This research was supported by a grant from the Center for the Study of Culture, Health, and Human Development at the University of Connecticut.

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Authors and Affiliations

  1. Department of Human Development and Family Sciences, University of Connecticut, Storrs, CT, USA

    Jamie L. Dolce & Maria D. LaRusso

  2. Department of Anthropology and Human Rights Institute, University of Connecticut, Storrs, CT, USA

    César Abadia-Barrero

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  1. Jamie L. Dolce
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  2. Maria D. LaRusso
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Correspondence to Jamie L. Dolce.

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Dolce, J.L., LaRusso, M.D. & Abadia-Barrero, C. Disruptions and Adaptations in Family Functioning: A Study of Families’ Experiences with PANS/PANDAS. J Child Fam Stud 31, 790–806 (2022). https://doi.org/10.1007/s10826-021-02101-3

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