Engaging Caregivers in the Treatment of Youth with Complex Developmental and Mental Health Needs

  • Ahrang Yoo
  • Monique Kim
  • Melissa M. Ross
  • Angela Vaughn-Lee
  • Beverly Butler
  • Susan dosReis


Caregivers of youth with coexisting cognitive and mental health problems face difficult treatment decisions for their child and have unique challenges engaging in shared decision-making. Many stakeholders can influence care management decisions, and the child’s cognitive impairment often prohibits their inclusion in the shared decision-making process. In-depth interviews and focus groups with 37 caregivers elicited their experiences with care management related to their child’s educational, mental health, and other care needs. Four themes that describe the process of engagement were awareness, activation, formulating a strategy, and action. Findings show psychoeducation, and peer-to-peer support could enhance caregivers’ awareness of the condition and encourage activation, which would help in navigating complex service sectors. Coordinated services could enhance capabilities for formulating a strategy jointly with multiple providers and stakeholders. Ultimately, this would contribute to shared decision-making around a common treatment goal that hopefully leads to better quality of care in the least restrictive setting.



This work was supported through a Patient Centered Outcomes Research Institute (PCORI) Award (ME-1306-01511; PI: dosReis). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

Author Contributions

Dr. Susan dosReis conceptualized the study, collected research data, interpreted the research results, and assisted with writing the manuscript. Dr. Monique Kim assisted with the data collection, data analysis, and reviewed and edited the manuscript. Ms. Ahrang Yoo assisted with the data collection, analyzed and interpreted the data, and contributed to the writing and editing of the manuscript. Dr. Melissa Ross contributed to the conceptualization of the study, data analysis, interpretation of the findings, and the review and edits to the manuscript. Ms. Angela Vaughn-Lee contributed to the data collection, data interpretation and editing of the manuscript. Ms. Beverly Butler contributed to the data collection, interpretation of the data, and editing of the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflicts of interest.


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Copyright information

© National Council for Behavioral Health 2018

Authors and Affiliations

  1. 1.Department of Pharmaceutical Health Services ResearchUniversity of Maryland School of PharmacyBaltimoreUSA
  2. 2.Department of PsychiatryUniversity of Maryland School of MedicineBaltimoreUSA

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