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Identifying and Integrating Parent Priorities for Psychosocial Support Services in a Pediatric Cystic Fibrosis Clinic

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Abstract

Engaging parents early in the development of psychosocial support programs in cystic fibrosis (CF) clinics may enable services and care team recommendations to be tailored appropriately. This pilot study identified psychosocial priorities of parents of children with CF related to treatment adherence, parent/child mental health, and CF-related communication. Forty parents of children with CF (2 months to 17 years) completed an anonymous 17-item survey during routine clinic visits that assessed priorities related to psychosocial services. Elements of a quality improvement framework were used to develop the survey and determine recommendations based on findings. Parents reported the most interest in support related to improving adherence to respiratory therapies and helping children complete treatments independently. Other priority areas included services that helped children cope with feelings of isolation or abnormality due to CF and strategies to improve communication with the care team. Additionally, the majority of families indicated that they preferred receiving psychosocial services during routine clinic visits, followed by periodic parent workshops. Based on survey results, the psychosocial team at our center developed a survey/response model (e.g., roundtables, workshops) that may serve useful for other CF care teams as they identify the priorities of parents and adapt to their needs.

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Funding

This study was funded by a Mental Health Coordinator Grant from the Cystic Fibrosis Foundation (CMHC162; Schechter, PI).

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Authors and Affiliations

  1. Department of Psychology, Virginia Commonwealth University, Box 842018, Richmond, VA, 23284, USA

    Robin S. Everhart & Stephen J. Molitor

  2. Division of Pulmonary Medicine, Children’s Hospital of Richmond at VCU, Richmond, VA, USA

    Dena Wentz, H. Joel Schmidt & Michael S. Schechter

Authors
  1. Robin S. Everhart
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  2. Stephen J. Molitor
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  3. Dena Wentz
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  4. H. Joel Schmidt
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  5. Michael S. Schechter
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Corresponding author

Correspondence to Robin S. Everhart.

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Conflict of interest

The authors Robin S. Everhart, Stephen J. Molitor, Dena Wentz, H. Joel Schmidt, and Michael S. Schechter declare that they have no conflict of interest.

Human and Animal Rights

All procedures were in accordance with the ethical standards of the institutional research committees and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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Everhart, R.S., Molitor, S.J., Wentz, D. et al. Identifying and Integrating Parent Priorities for Psychosocial Support Services in a Pediatric Cystic Fibrosis Clinic. J Clin Psychol Med Settings 26, 235–241 (2019). https://doi.org/10.1007/s10880-018-9588-1

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  • DOI: https://doi.org/10.1007/s10880-018-9588-1

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