Engaging Caregivers in the Treatment of Youth with Complex Developmental and Mental Health Needs
- 144 Downloads
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.
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.
- 17.Doyle CA, McDougle CJ. Pharmacologic Treatments for the Behavioral Symptoms associated with Autism Spectrum Disorders across the Lifespan. Dialogues Clinical Neuroscience. 2012;14(3):263–279.Google Scholar
- 30.Romley JA, Shah AK, Chung PJ, et al. Family-Provided Health Care for Children with Special Health Care Needs. Pediatrics. 2017;139(1).Google Scholar
- 34.Substance Abuse and Mental Health Services Administration. Mental Health: A Report of the Surgeon General, 1999. U.S. Department of Health & Human Services. Available online at https://profiles.nlm.nih.gov/ps/access/NNBBHS.pdf. Accessed on May 8, 2017.
- 36.Rosenstock HA, Vincent KR. Parental Involvement as a Requisite for Successful Adolescent Therapy. The Journal of Clinical Psychiatry. 1979;March:132–134.Google Scholar
- 60.Maccoby EE, Martin JA. Socialization in the context of the family: Parent-child interaction. In: EM Hetherington (Ed). Handbook of Child Psychology: Volume 4. Socialization, Personality, and Social Development, 4th Edition. New York: Wiley, 1983, pp. 1–101.Google Scholar
- 66.Creswell JW. Qualitative Inquiry and Research Design. Choosing Among Five Approaches. Thousand Oaks: Sage Publications, 1998.Google Scholar
- 79.Sanders MR, Mazzucchelli TG, Stuman LJ. Practitioner's Manual for Standard Stepping Stones Triple P. Brisbane: Triple P International, 2003.Google Scholar
- 82.Whittingham K, Sofronoff K, Sheffield J, et al. Do Parental Attributions Affect Treatment Outcome in a Parenting Program? An Exploration of the Effects of Parental Attributions in an RCT of Stepping Stones Triple P for the ASD Population. Research in Autism Spectrum Disorders. 2009;3(1):129–144.CrossRefGoogle Scholar
- 83.Usher L, Wildfire J, Webster D, et al. Evaluation of the Anchor-Site Phase of Family to Family. The Annie E. Casey Foundation: Baltimore, Maryland. Available online at http://cssr.berkeley.edu/cwscmsreports/LatinoPracticeAdvisory/PRACTICE_EB_Child_Welfare_Practice_Models/Family%20to%20Family/Usher%202010.pdf. Accessed on May 8, 2017.
- 88.Murphy NA, Christian B, Caplin DA, et al. The Health of Caregivers for Children with Disabilities: Caregivers Perspectives Child: Care, Health, and Development. 2006;33(2):180–187.Google Scholar
- 90.Lenardson JD, Ziller EC, Race MM, et al. Access to Mental Health Services and Family Impact of Rural Children with Mental Health Problems. Cutler Institute for Health and Social Policy, University of Southern Maine. Available online at http://muskie.usm.maine.edu/Publications/rural/WP45/mental-health-access-rural-children-family-impact.pdf. Accessed on May 8, 2017.