Skip to main content

Advertisement

Log in

Collaboration, Empowerment, and Advocacy: Consumer Perspectives about Treatment Engagement

  • Original Paper
  • Published:
Journal of Child and Family Studies Aims and scope Submit manuscript

Abstract

Engagement in children’s mental health treatment is strikingly low. This might be due to differences in perspectives about what it means to be engaged in treatment as well as the strategies that are most effective at engaging families, as little is known about how well consumers’ perspectives map onto current models of engagement and the empirical literature. This qualitative study examined family perspectives of (1) aspirational and actual engagement in treatment, (2) barriers that impeded engagement, and (3) engagement strategies they recommended their providers and agencies use. Four focus groups were conducted with 20 caregivers (ages 24–75), and 11 youth and young adults (ages 15–23). All participants were currently or formerly enrolled in children’s mental health services. Data were analyzed through consensual qualitative research methods. Findings revealed that youth and caregivers’ definitions of engagement included both attitudinal and behavioral components. Numerous barriers impeded components of aspirational engagement, and agency- and provider-related barriers were most pervasive. Youth reported more attitudinal barriers, whereas caregivers reported more behavioral barriers. Participants described advocacy (e.g., taking direct action to influence treatment) as a key engagement component; however, such advocacy often involved treatment non-adherence that could be interpreted by providers as disengagement. Families recommended strategies to strengthen the therapeutic relationship and build trust that are empirically supported. However, families described many experiences in which providers did not use these empirically supported strategies. Families also described some theoretically supported engagement strategies as having a negative impact on engagement. In sum, the findings suggest that providers should take an empowering family-centered treatment approach where they seek to understand and build upon clients’ engagement perspectives.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  • Alegria, M., Vallas, M., & Pumariega, A. J. (2010). Racial and ethnic disparities in pediatric mental health. Child and Adolescent Psychiatric Clinics of North America, 19, 759–774. doi:10.1016/j.chc.2010.07.001.

    Article  PubMed  PubMed Central  Google Scholar 

  • Baker-Ericzén, M. R., Jenkins, M., & Haine-Schlagel, R. (2013). Therapist, parent, and youth perspectives of treatment barriers to family-focused community outpatient mental health services. Journal of Child & Family Studies, 22, 854–868.

    Article  Google Scholar 

  • Barrett, M. S., Chua, W., Crits-Christoph, P., Gibbons, M. B., & Thompson, D. (2008). Early withdrawal from mental health treatment: Implications for psychotherapy practice. Psychotherapy: Theory, Research, Practice, Training, 45, 247–267. doi:10.1037/0033-3204.45.2.247.

    Article  Google Scholar 

  • Becker, K. D., Buckingham, S. L., & Brandt, N. E. (2015). Engaging youth and families in school mental health services. Child Psychiatric Clinics of North America, 24, 385–398. doi:10.1016/j.chc.2014.11.002.

    Article  Google Scholar 

  • Becker, K. D., Lee, B. R., Daleiden, E. L., Lindsey, M., Brandt, N. E., & Chorpita, B. F. (2015). The common elements of engagement in children’s mental health services: Which elements for which outcomes?. Journal of Clinical Child and Adolescent Psychology, 44, 30–43. doi:10.1080/15374416.2013.814543.

    Article  PubMed  Google Scholar 

  • Brannan, A. M., Heflinger, C. A., & Foster, E. M. (2003). The role of caregiver strain and other family variables in determining children’s use of mental health services. Journal of Emotional and Behavioral Disorders, 11, 78–92.

    Article  Google Scholar 

  • Charmaz, K. (2000). Grounded theory: Objectivist & constructivist methods. In N. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 509–535). Thousand Oaks, CA: Sage Publications, Inc.

  • Costello, E. J., Copeland, W., & Angold, A. (2011). Trends in psychopathology across the adolescent years: What changes when children become adolescents, and when adolescents become adults?. Journal of Child Psychology and Psychiatry, 52, 1015–1025.

    Article  Google Scholar 

  • Crabtree, B. F., & Miller, W. L. (Eds.) (1999). Using codes and code manuals: A template organizing style of interpretation. In Doing qualitative research in primary care: Multiple strategies (2nd ed., pp. 163–177). Newbury Park, CA: Sage Publications, Inc.

  • Ellis, M. L., Lindsey, M. A., Barker, E. D., Boxmeyer, C. L., & Lochman, J. E. (2013). Predictors of engagement in a school-based family preventive intervention for youth experiencing behavioral difficulties. Prevention Science, 14, 457–467. doi:10.1007/s11121-012-0319-9.

    Article  PubMed  PubMed Central  Google Scholar 

  • George, M. W., McDaniel, H. L., Michael, K. D., & Weist, M. D. (2014). Clinician and caregiver perspectives on family involvement in school mental health services for youth receiving mood disorders treatment. Emotional & Behavioral Disorders in Youth, 14, 16–21.

    Google Scholar 

  • Glesne, C. (2011). Becoming qualitative researchers: An introduction(4th ed.). Boston, MA: Pearson Education, Inc.

    Google Scholar 

  • Gopalan, G., Goldstein, L., Klingenstein, K., Sicher, C., Blake, C., & McKay, M. M. (2010). Engaging families into child mental health treatment: Updates and special considerations. Journal of the Canadian Academy of Child & Adolescent Psychiatry, 19, 182–196.

    Google Scholar 

  • Guba, E. G. & Lincoln, Y. S. (2005). Paradigmatic controversies and emerging confluences. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (3rd ed., pp. 191–216). Thousand Oaks, CA: Sage Publications, Inc.

  • Hill, C. E., Thompson, B. J., & Williams, E .N. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25, 517–572. doi:10.1177/0011000097254001.

    Article  Google Scholar 

  • Hoepfl, M. (1997). Choosing qualitative research: A primer for technology education researchers. Journal of Technology Education, 9, 47–63.

    Article  Google Scholar 

  • Hogan, M. F. (2003). The President’s New Freedom Commission: Recommendations to transform mental health care in America. Psychiatric Services, 54, 1467–1474.

    Article  PubMed  Google Scholar 

  • Hopkins, P. E. (2007). Thinking critically and creatively about focus groups. Area, 39, 528–535.

    Article  Google Scholar 

  • Howell, E. (2004). Access to children’s mental health services under Medicaid and SCHIP. Washington, DC: The Urban Institute.

    Google Scholar 

  • Iachini, A. L., Hock, R. M., Thomas, M., & Clone, S. (2015). Exploring the youth and parent perspective on practitioner behaviors that promote treatment engagement. Journal of Family Social Work, 18, 57–73. doi:10.1080/10522158.2014.974293.

    Article  Google Scholar 

  • Kazdin, A. E., Holland, L., Crowley, M., & Breton, S. (1997). Barriers to treatment participation scale: Evaluation and validation in the context of child outpatient treatment. Child Psychology and Psychiatry and Allied Disciplines, 38, 1051–1062. doi:10.1111/j.1469-7610.1997.tb01621.x.

    Article  Google Scholar 

  • Kelleher, K. J., & Hoagwood, K. (2015). Beyond blame: Parents as partners. The Journal of Pediatrics, 167, 795–796.

    Article  PubMed  Google Scholar 

  • Krueger, R. A., & Casey, M. A. (2009). Focus groups: A practical guide for applied research. Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  • Lester, H., Marshall, M., Jones, P., Fowler, D., Amos, T., Khan, N., & Birchwood, M. (2011). Views of young people in early intervention services for first-episode psychosis in England. Psychiatric Services, 62, 882–887.

    Article  PubMed  Google Scholar 

  • Lindsey, M. A., Brandt, N. E., Becker, K. D., Lee, B. R., Barth, R. P., Daleiden, E. L., & Chorpita, B. F. (2014). Identifying the common elements of treatment engagement interventions in children’s mental health services. Clinical Child and Family Psychology Review, 17, 283–298. doi:10.1007/s10567-013-0163-x.

    Article  PubMed  Google Scholar 

  • Lindsey, M. A., Chambers, K., Pohle, C., Beall, P., & Lucksted, A. (2013). Understanding the behavioral determinants of mental health service use by urban, under-resourced black youth: Adolescent and caregiver perspectives. Journal of Child and Family Studies, 22, 107–121.

    Article  Google Scholar 

  • Lowie, J. A., Lever, N. A., Ambrose, M. G., Tager, S. B., & Hill, S. (2003). Partnering with families in expanded school mental health programs. In M. D. Weist, S. W. Evans, & N. A. Lever (Eds.), Handbook of school mental health: Advancing practice and research (pp. 135–148). New York, NY, US: Kluwer Academic/Plenum Publishers.

  • MacLean, L., Greenough, T., Jorgenson, V., & Couldwell, M. (1989). Getting through the front door: Improving initial appointment attendance at a mental-health clinic. Canadian Journal of Community Mental Health, 8, 123–133.

    Article  Google Scholar 

  • Marshall, C., & Rossman, G. B. (1995). Designing qualitative research (2nd ed.). Thousand Oaks, CA: Sage Publications, Inc.

    Google Scholar 

  • McKay, M. M., & Bannon, W. M. (2004). Engaging families in child mental health services. Child and Adolescent Psychiatric Clinics of North America, 13, 905–921. doi:10.1016/j.chc.2004.04.001.

    Article  PubMed  Google Scholar 

  • Merikangas, K. R., He, J., Burstein, M., Swanson, S. A., Avenevoli, S., Cui, L., & Swendsen, J. (2010). Lifetime prevalence of mental disorders in US adolescents: Results from the national comorbidity study-adolescent supplement (NCS-A). Journal of the American Academy of Child and Adolescent Psychiatry, 49, 980–989.

    Article  PubMed  PubMed Central  Google Scholar 

  • Nelson, G., & Prilleltensky, I. (2010). Community psychology: In pursuit of liberation and wellbeing (2nd ed.). London, UK: Palgrave Macmillan.

    Google Scholar 

  • Nock, M. C., & Ferriter, C. (2005). Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review. Clinical Child and Family Psychology Review, 8, 149–166.

    Article  Google Scholar 

  • Nock, M. K., & Kazdin, A. E. (2005). Randomized controlled trial of a brief intervention for increasing participation in parent management training. Journal of Consulting and Clinical Psychology, 73, 872–879. doi:10.1037/0022-006X.73.5.872.

    Article  PubMed  Google Scholar 

  • Osher, T., Garay, L., Jennings, B., Jimerson, D., Markus, S., & Martinez, K. (2011). Closing the gap: Cultural perspectives on family-driven care. Washington, DC: National Federation of Families for Children's Mental Health.

    Google Scholar 

  • Parrish, J., Charlop, M., & Fenton, L. (1986). Use of a stated waiting list contingency and reward opportunity to increase appointment keeping in an outpatient pediatric psychology clinic. Journal of Pediatric Psychology, 11, 81–89.

    Article  PubMed  Google Scholar 

  • Pellerin, K., Costa, N., Weems, C., & Dalton, R. (2010). An examination of treatment completers and non-completers at a child and adolescent community mental health clinic. Community Mental Health Journal, 46, 273–281.

    Article  PubMed  Google Scholar 

  • Schauer, C., Everett, A., del Vecchio, P., & Anderson, L. (2007). Promoting the value and practice of shared decision-making in mental health care. Psychiatric Rehabilitation Journal, 31, 54–61. doi:10.2975/31.1.2007.54.61.

    Article  PubMed  Google Scholar 

  • Schwandt, T. A. (1997). Qualitative inquiry: A dictionary of terms. Thousand Oaks, CA: Sage Publications, Inc.

    Google Scholar 

  • Staudt, M. (2007). Treatment engagement with caregivers of at-risk children: Gaps in research and conceptualization. Journal of Child and Family Studies, 16, 183–196.

    Article  Google Scholar 

  • Tanskanen, S., Morant, N., Hinton, M., Lloyd-Evans, B., Crosby, M., Killaspy, H., & Johnson, S. (2011). Service user and carer experiences of seeking help for a first episode of psychosis: A UK qualitative study. BMC Psychiatry, 11, doi:10.1186/1471-244X-11-157-172.

Download references

Disclosures

Funding Source: 1915c Demonstration Waiver: Community Alternatives to Psychiatric and Residential Treatment Facilities Demonstration Waiver Program Management, Workforce Development and Program Evaluation

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Sara L. Buckingham.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Statement of Human Rights

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee 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.

Electronic supplementary material

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Buckingham, S.L., Brandt, N.E., Becker, K.D. et al. Collaboration, Empowerment, and Advocacy: Consumer Perspectives about Treatment Engagement. J Child Fam Stud 25, 3702–3715 (2016). https://doi.org/10.1007/s10826-016-0507-5

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10826-016-0507-5

Keywords

Navigation