Top

Gepubliceerd in:

22-10-2021 | Original Paper

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

Auteurs: Jamie L. Dolce, Maria D. LaRusso, César Abadia-Barrero

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 3/2022

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.

vorige artikel Examining Differences in Parenting Stress, Parenting Efficacy, and Household Context among Mothers of Youth with Autism and/or ADHD

volgende artikel Listen to Me: Parents’ Satisfaction with Special Needs Services in Syria – A Descriptive and Exploratory Study

Abadia, C. E. & Oviedo, D. G. (2009). Bureaucratic itineraries in Colombia. A theoretical and methodological tool to assess managed-care health care systems. Social Science & Medicine, 68(6), 1153–1160. https://doi.org/10.1016/j.socscimed.2008.12.049.CrossRef

Atkinson, R., & Flint, J. (2001). Accessing hidden and hard-to-reach populations: snowball research strategies. Social Research Update, 33(1), 1–4.

Attard, A., & Coulson, N. S. (2012). A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums. Computer in Human Behavior, 28, 500–506. https://doi.org/10.1016/j.chb.2011.10.022.CrossRef

Braun, V., & Clarke, V. (2012). Thematic analysis. In H. Cooper, P. M. Camic, D. L. Long, A. T. Panter, D. Rindskopf, & K. J. Sher (Eds.), APA handbook of research methods in psychology (pp. 57–71). American Psychological Association. https://doi.org/10.1037/13620-004.

Bury, M. (2001). Illness narratives: Fact or fiction? Sociology of Health & Illness, 23(3), 263–285.CrossRef

Chang, K., Frankovich, J., Cooperstock, M., Cunningham, M. W., Latimer, M. E., Murphy, T. K., Pasternack, M., Thienemann, M., Williams, K., Walter, J., & Swedo, S. E. (2015). Clinical evaluation of youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology, 25(1), 3–13. https://doi.org/10.1089/cap.2014.0084.CrossRefPubMedPubMedCentral

Charmaz, K. (2006). Coding in grounded theory practice. In K. Charmaz (Ed.), Constructing grounded theory a practical guide through qualitative analysis (pp. 42–71). Sage Publications.

Coffey, J. S. (2006). Parenting a child with chronic illness: a metasynthesis. Pediatric Nursing, 32(1), Family Studies, 27, 3866–3876. https://doi.org/10.1007/s10826-018-1228-8.CrossRef

Farmer, C., Thienemann, M., Leibold, C. M., Kamalani, G., Sauls, B., & Frankovich, J. (2018). Psychometric evaluation of the caregiver burden inventory in children and adolescents with PANS. Journal of Pediatric Psychology, 43(7), 749–757. https://doi.org/10.1093/jpepsy/jsy014.CrossRefPubMedPubMedCentral

Frankovich, J., Thienemann, M., Pearlstein, J., Crable, A., Brown, K., & Chang, K. (2015). Multidisciplinary clinic dedicated to treating youth with pediatric acute-onset neuropsychiatric syndrome: presenting characteristics of the first 47 consecutive patients. Journal of Child and Adolescent Psychopharmacology, 25(1), 38–47. https://doi.org/10.1089/cap.2014.0081.CrossRefPubMedPubMedCentral

Frankovich, J., Swedo, S., Murphy, T., Dale, R. C., Agalliu, D., Williams, K., Daines, M., Hornig, M., Chugani, H., Sanger, T., Muscal, E., Pasternack, M., Cooperstock, M., Gans, H., Zhang, Y., Cunningham, M., Bernstein, G., Bromberg, R., & Willett, T., PANS/PANDAS Consortium. (2017). Clinical management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—use of immunomodulatory therapies. Journal of Child and Adolescent Psychopharmacology, 27(7), 574–593. https://doi.org/10.1089/cap.2016.0148.CrossRef

Frankovich, J., Leibold, C. M., Farmer, C., Sainani, K., Kamalani, G., Farhadian, B., Willett, T., Park, J. M., Sidell, D., Ahmed, S., & Thienemann, M. (2018). The burden of caring for a child or adolescent with pediatric acute-onset neuropsychiatric syndrome (PANS): an observational longitudinal study. Journal of Clinical Psychiatry, 80(1), 2–6. https://doi.org/10.4088/JCP.17m12091.CrossRef

Gannoni, A. F., & Shute, R. H. (2010). Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clinical Child Psychology and Psychiatry, 15(1), 39–53. https://doi.org/10.1177/1359104509338432.CrossRefPubMed

Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough?: An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903.CrossRef

Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research, 27(4), 591–608. https://doi.org/10.1177/1049732316665344.CrossRefPubMed

Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., Piazza-Waggoner, C., Zeller, M. H., & Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31(1), 1–14. https://doi.org/10.1097/DBP.0b013e3181c7226b.CrossRef

Hosoda, T. (2014). The impact of childhood cancer on family functioning: a review. Graduate Student Journal of Psychology, 15, 18–30. https://www.tc.columbia.edu/publications/gsjp/gsjp-volumes-archive/36303_2hosoda.pdf.

Jowett, A. (2015). A case for using online discussion forums in critical psychological research. Qualitative Research in Psychology, 12(3), 287–297. https://doi.org/10.1080/14780887.2015.1008906.CrossRef

Kazak, A. E. (1989). Families of chronically ill children: a systems and social-ecological model of adaptation and challenge. Journal of consulting and clinical psychology, 57(1), 25.CrossRef

Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books.

Knepper, K. N. K., & Arrington, M. I. (2018). Parents’ narratives in an online PHPV forum: toward a typology of caregiver illness narratives. Illness, Crisis & Loss, 26(4), 316–329. https://doi.org/10.1177/1054137316667594.CrossRef

Kronenberg, W. G., & Thompson, Jr, R. J. (1990). Dimensions of family functioning in families with chronically ill children: a higher order factor analysis of the Family Environment Scale. Journal of Clinical Child Psychology, 19(4), 380–388.CrossRef

Leeman, J., Crandell, J. L., Lee, A., Bai, J., Sandelowski, M., & Knafl, K. (2016). Family functioning and the well‐being of children with chronic conditions: a meta‐analysis. Research in Nursing & Health, 39(4), 229–243. https://doi.org/10.1002/nur.21725.CrossRef

Lewandowski, A. S., Palermo, T. M., Stinson, J., Handley, S., & Chambers, C. T. (2010). Systematic review of family functioning in families of children and adolescents with chronic pain. The Journal of Pain, 11(11), 1027–1038. https://doi.org/10.1016/j.jpain.2010.04.005.CrossRefPubMedPubMedCentral

Mettica, M. (2018). Family impacts reported by parents raising children with pediatric acute-onset neuropsychiatric syndrome (PANS) [Unpublished doctoral dissertation]. Texas Woman’s University.

McClellan, C. B., & Cohen, L. L. (2007). Family functioning in children with chronic illness compared with healthy controls: a critical review. Journal of Pediatrics, 150(3), 221–223. https://doi.org/10.1016/j.jpeds.2006.11.063.CrossRef

McManus, B. M., Carle, A., Acevedo-Garcia, D., Ganz, M., Hauser-Cram, P., & McCormick, M. (2011). Modeling the social determinants of caregiver burden among families of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 116(3), 246–260. https://doi.org/10.1352/1944-7558-116.3.246.CrossRefPubMed

Michaelson, V., Pilato, K. A., & Davison, C. M. (2021). Family as a health promotion setting: a scoping review of conceptual models of the health-promoting family. PLoS ONE, 16(4) https://doi.org/10.1371/journal.pone.0249707.

Morris, A. S., Silk, J. S., Steinberg, L., Myers, S. S., & Robinson, L. R. (2007). The role of the family context in the development of emotion regulation. Social Development, 16(2), 361–388. https://doi.org/10.1111/j.1467-9507.2007.00389.x.CrossRefPubMed

Murphy, T. K., Patel, P. D., McGuire, J. F., Kennel, A., Mutch, P. J., Parker-Athill, C., Hanks, C. E., Lewin, A. B., Storch, E. A., Toufexis, M. D., Dadlani, G. H., & Rodriguez, C. A. (2015). Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. Journal of Child and Adolescent Psychopharmacology, 25(1), 14–25. https://doi.org/10.1089/cap.2014.0062.CrossRefPubMedPubMedCentral

National Institute of Mental Health. (2019). PANDAS – questions and answers. https://www.nimh.nih.gov/health/publications/pandas/index.shtml.

Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Sage Publications.

Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. (2004). Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatrics, 4(1), 1–13. https://doi.org/10.1186/1471-2431-4-1.CrossRefPubMedPubMedCentral

Riessman, C. K. (2005). Narrative Analysis. Narrative, Memory & Everyday Life, 1–7. University of Huddersfield.

Rönkä, A., & Korvela, P. (2009). Everyday family life: dimensions, approaches, and current challenges. Journal of Family Theory & Review, 1(2), 87–102.CrossRef

Singer, M. (2013). Studying hidden and hard-to-reach populations. In Shenshul, J. J. & LeCompte, M. D. (Eds.)., Specialized ethnographic methods: a mixed methods approach (pp. 255–317). AltaMira Press.

Skinner, H., Steinhauer, P., & Sitarenios, G. (2000). Family assessment measure (FAM) and process model of family functioning. Journal of Family Therapy, 22(2), 190–210.CrossRef

Sloper, P., & Turner, S. (1993). Risk and resistance factors in the adaptation of parents of children with severe physical disability. Journal of Child Psychology and Psychiatry, 34(2), 167–188. https://doi.org/10.1111/j.1469-7610.1993.tb00978.x.CrossRefPubMed

Swedo, S. E., Leonard, H. L., Garvey, M., Mittleman, B., Allen, A. J., Perlmutter, S., Lougee, L., Dow, S., Zamkoff, J., & Dubbert, B. K. (1998). Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases. American Journal of Psychiatry, 155(2), 264–271. https://doi.org/10.1176/ajp.155.2.264.CrossRef

Swedo, S. E., Leonard, H. L., & Rapoport, J. L. (2004). The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction. Pediatrics, 113(4), 907–911. https://doi.org/10.1542/peds.113.4.907.CrossRefPubMed

Swedo, S. E., Leckman, J. F., & Rose, N. R. (2012). From research subgroup to clinical syndrome: modifying the PANDAS criteria to describe PANS (Pediatric acute-onset neuropsychiatric syndrome). Pediatrics & Therapeutics, 2(2), 1–8. https://doi.org/10.4172/2161-0665.1000113.CrossRef

Tona, J. T., Bhattacharjya, S., & Calaprice, D. (2017). Impact of PANS and PANDAS exacerbations on occupational performance: a mixed-methods study. American Journal of Occupational Therapy, 71(3), 1–9. https://doi.org/10.5014/ajot.2017.022285.CrossRef

Trute, B., & Hauch, C. (1988). Building on family strength: a study of families with positive adjustment to the birth of a developmentally disabled child. Journal of Marital and Family Therapy, 14(2), 185–193.CrossRef

Williams, K. A., & Swedo, S. E. (2015). Post-infectious autoimmune disorders: Sydenham’s chorea, PANDAS and beyond. Brain Research, 1617, 144–154. https://doi.org/10.1016/j.brainres.2014.09.071.CrossRefPubMed

Titel: Disruptions and Adaptations in Family Functioning: A Study of Families’ Experiences with PANS/PANDAS
Auteurs: Jamie L. Dolce
Maria D. LaRusso
César Abadia-Barrero
Publicatiedatum: 22-10-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Child and Family Studies / Uitgave 3/2022
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI: https://doi.org/10.1007/s10826-021-02101-3

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 3/2022

Dual Roles: Experiences of Special Educators who are Mothers of a Child with a Disability

Passing the Peace: Embracing Multiculturalism in our Black Christian and Punjabi Sikh Marriage

More than Half: Multiracial Families in the World War II Japanese American Incarceration Camps

Supporting Children and Youth in Multiracial Families in the United States: Racial-Ethnic Socialization and Familial Support of Multiracial Experiences

Asthma Control in Children and Adolescents whose Mothers have a Common Mental Disorder

Special Section Conclusion: Future Directions of Multiracial Families