Abstract
For parents of youth with emotional and behavioral disorders, activation, or having the knowledge, skills, and confidence to access and engage in appropriate services for their children, is important for managing their child’s mental health care. The Parent Activation Measure (PAM) was modified to create the Parent Patient Activation Measure-Mental Health (P-PAM-MH) to measure activation as part of a randomized controlled trial of a peer parent support intervention for parents of youth with emotional and behavioral problems. Results from this study provide initial support for use of the P-PAM-MH as a measure of activation in this population and for the reliability and validity of the measure. Implications of the findings from this study for research and practice in behavioral health are discussed.
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DeCamp LR, Leifheitm K, Shah H, et al. Cross-cultural validation of the parent-patient activation measure in low income Spanish- and English-speaking parents. Patient Education and Counseling. 2016;99(12):2055–2062. Accessed June 1, 2017 at doi:10.1016/j.pec.2016.07.003.
Hibbard JH, Greene J. What the evidence shows about patient activation: Better health outcomes and care experiences; Fewer data on costs. Health Affairs. 2013;32(2):207–214.
Hibbard JH, Stockard J, Mahoney ER, et al. Development of the Patient Activation Measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Services Research. 2004;39(4):1005–1026.
Bodenheimer T, Lorig K, Holman H, & Grumbach K. Patient self-management of chronic disease in primary care. Journal of the American Medical Association. 2002; 288(19): 2469–2475.
Ruble L, Murray D, McGrew JH, Brevoort K, Wong VW. A preliminary study of activation, stress, and self-management of parents of children with autism spectrum disorder. Journal of Child and Family Studies. 2018; doi: https://doi.org/10.1007/s10826-017-0814-5
Pennarola BW, Rodday DK, Ratichek SJ, et al. Factors associated with parental activation in pediatric hematopoietic stem cell transplant. Medical Care Research and Review. 2012;69(2):194–214. doi: https://doi.org/10.1177/1077558711431460.
Pennarola BW, Rodday AM, Bingen K, et al. Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant. Supporting Care in Cancer. 2015;23(7):1997–2006. doi:https://doi.org/10.1007/s00520-014-2544-1.
Rodday AM, Pedowitz EJ, Mayer DK, et al. Parental caregiving of children prior to hematopoietic stem cell transplant. Research in Nursing and Health. 2012;35(4):328–339. doi: https://doi.org/10.1002/nur.21485.
Fiks AG, Mayne SL, Karavite DJ, et al. Parent-reported outcomes of a shared decision-making portal in asthma: A practice-based RCT. Pediatrics. 2015;135(4):965.
Oelstrom M, Lee J, Simpson P, et al. 562: Parent stress is not directly associated with parent activation in the PICU. Critical Care Medicine. 2015;43(12):142. doi: https://doi.org/10.1097/01.ccm.0000474390.12041.77.
Wagner M, Newman L. Longitudinal transition outcomes of youth with emotional disturbances. Psychiatric Rehabilitation Journal. 2012;35(3):199–208.
Duchnowski AJ, Kutash K, Green AL, et al. Parent support services for families of children with emotional disturbances being served in special education settings in elementary schools: An examination of data from the Special Education Elementary Longitudinal Study. Journal of Disability Policy Studies. 2012;24(1):36–52. Available online at doi:https://doi.org/10.1177/1044207312460889.
Wagner M, Newman L, Cameto R, et al. After high school: A first look at the postschool experiences of youth with disabilities: A report from the National Longitudinal Transition Study-2. Office of Special Education programs and U.S. Department of Education. SRI Project P11182. Menlo Park, CA: SRI International. 2005.
Jans L, Stoddard S, Kraus L, Chartbook on Mental Health and Disability in the United States. An InfoUse Report. U.S. Department of Education, National Institute on Disability and Rehabilitation Research. Washington, D.C. 2004.
Kutash K, Duchnowski AJ. Understanding the complexity of the children and families we serve. In S. Barrett L. Eber, M. Weist (Eds.). Advancing Education Effectiveness: Interconnecting School Mental Health and School-wide Positive Behavior Support. Accessed May 29, 2017 at: http://www.pbis.org/common/pbisresources/publications/Final-Monograph.pdf
Rones M, Hoagwood K. School-based mental health services: A research review. Clinical Child & Family Psychology Review. 2000;3(4):223–241.
Mayberry LS, Heflinger CA. How caregivers make meaning of child mental health problems: Toward understanding caregiver strain and help seeking. Families in Society-the Journal of Contemporary Human Services. 2013;94(2):105–113. doi: https://doi.org/10.1606/1044-3894.4286.
Reich S., Bickman L., Heflinger CA. Covariates of self-efficacy: Caregiver characteristics related to mental health services efficacy. Journal of Emotional and Behavioral Disorders. 2004;12(2):99–108.
Kutash K, Duchnowski AJ, Green AL. Meeting the metal health needs of youth with emotional and behavioral disorders. Beyond Behavior. 2015; 24(2): 4–13.
Brannan AM, Heflinger CA. Distinguishing caregiver strain from psychological distress: Modeling the relationships among child, family, and caregiver variables. Journal of Child and Family Studies. 2001; 10(4): 405–418.
Mendenhall A, Mount K. Parents of children with mental illness: Exploring the caregiver experience and caregiver-focused interventions. Families in Society. 2011; 92(2): 183–190.
Merikangas KR, He JP, Brody D, et al. Prevalence and treatment of mental disorders among US children in the 2001-2004 NHANES. Pediatrics. 2010;125(1):75–81. doi:https://doi.org/10.1542/peds.2008-2598
Ingoldsby EM. Review of interventions to improve family engagement and retention in parent and child mental health programs. Journal of Child and Family Studies. 2010;19(5):629–645.
Green CA, Perrin NA, Polen MR, et al. Development of the Patient Activation Measure for Mental Health. Administration and Policy in Mental Health and Mental Health Services Research. 2009;37(4):327–333.
Green CA, Perrin NA, Leo MC, et al. Recovery from serious mental health illness: Trajectories, characteristics, and the role of mental health care. Psychiatric Services. 2013;64(12):1203–1210.
Bonfils KA, Fukui S, Adams EL, et al. Why are you here again? Concordance between consumers and providers about primary concern in recurring psychiatric visits. Psychiatry Research. 2014;220:541–548.
Oles SK, Fukui S, Rand KL, et al. The relationship between hope and patient activation in consumers with schizophrenia: Results from longitudinal analyses. Psychiatry Research. 2015;228:272–276.
Salyers MP, Matthias MS, Sidenbender S, et al. Patient activation in schizophrenia: Insights form stories of illness and recovery. Administration and Policy in Mental Health and Mental Health Services Research. 2013;40:419–427.
Goodman R. Psychometric properties of the Strengths and Difficulties Questionnaire (SDQ). Journal of the American Academy of Child and Adolescent Psychiatry. 2001;40(11):1337–1345.
Mellor D. Furthering the use of the strengths and difficulties questionnaire: Reliability with younger child respondents. Psychological Assessment. 2004;(4):396.
Koren PE, DeChillo N, Friesen BJ. Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology. 1992;37(4):305–321.
Brannan AM, Athay MM, Andrade AR. Measurement quality of the Caregiver Strain Questionnaire-Short Form 7 (CGSQ-SF7). Administration and Policy in Mental Health and Mental Health Services Research. 2012;39(1):51–59. doi: https://doi.org/10.1007/s10488-012-0412-1.
Andrich D. A rating formulation for ordered response categories. Psychometrika. 1978;43:357–374.
Rasch G. Probabilistic Models for Some Intelligence and Attainment Tests. Copenhagen, The Danish Institute of Educational Research, 1960.
Linacre JM Constructing measurement with a many-facet Rasch model. In: M Wilson (Ed.) Objective Measurement: Theory in Practice. Vol. II. Newark NJ: Ablex. 1994.
Ullman JB. Structural equation modeling. In: BG Tabachnick, LS Fidell (Eds.), Using Multivariate Statistics, Fourth Edition. Boston, MA: Allyn & Bacon. 2001, pp. 653–771.
Wilson M Constructing Measures: An Item Response Modeling Approach. Mahwah, NJ: Erlbaum, 2004.
Cronbach LJ. Report on a psychometric mission to Clinicia. Psychometrika. 1954;19:263–270.
Linacre JM. KR-20/Cronbach Alpha or Rasch Person Reliability: Which tells the truth? Rasch Measurement Transactions. 1997;11(3):580–581.
Guilford JP. Fundamental statistics in psychology and education. New York: McGraw-Hill. 1695.
Alegria M, Polo A, Gao S, et al. Evaluation of a patient activation and empowerment intervention in mental health care. Med Care. 2008;46(3):247–256. doi:https://doi.org/10.1097/MLR.0b013e318158af52
Yatchmenoff DK, Koren PE, Friesen BJ, et al. Enrichment and stress in families with a serious emotional disorder. Journal of Child and Family Studies. 1998;7(2):129–145. doi:https://doi.org/10.1023/A:1022935014502.
Kelley T, Ebel R, Linacre JM. Item discrimination indices. Rasch Measurement Transactions. 2002;16(3):883–884.
Boone WJ, Staver JR, Yale MS. Rasch Analysis in the Human Sciences. Dordrecht: Springer. 2014.
Kutash K, Duchnowski AJ, Green AL, et al. Supporting parents who have youth with emotional disturbances through a parent-to-parent support program: A proof of concept study using random assignment. Administration and Policy in Mental Health and Mental Health Services Research. 2011;38(5):412–427. doi: https://doi.org/10.1007/s10488-010-0329-5
Kutash K, Duchnowski AJ, Green AL, et al. Effectiveness of the Parent Connectors program: Results from a randomized controlled trial. School Mental Health. 2013;5(4):192–208. DOI:https://doi.org/10.1007/s12310-013-9106-4.
Brannan AM, Heflinger CA, Foster EM. The role of caregiver strain and other family variables in determining children’s use of mental health services. Journal of Emotional and Behavioral Disorders. 2003;11(2):77–91.
Embretson SE, Reise SP. Item Response Theory for Psychologists, Mahwah, NJ: Lawrence Erlbaum Associates. 2000.
Moors, G. Exploring the effect of a middle response category on response style in attitude measurement. Quality & Quantity. 2008;42(6):779–794.
Hunter JE, Schmidt FL. Methods of Meta-analysis: Correcting Error and Bias in Research Findings, Newbury Park, CA: Sage. 1990.
Prochaska JO, Velicer WF. The transtheoretcial model of health behavior change. American Journal of Health Promotion. 1997;12(1):38–48.
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The preparation of this article was supported in part by the Institute of Education Sciences, US Department of Education, through Grant R324A130180 to the University of Nebraska–Lincoln.
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The authors declare that they have no conflicts of interest. The opinions expressed are those of the authors and do not represent views of the Institute or the US Department of Education.
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Green, A.L., Lambert, M.C. & Hurley, K.D. Measuring Activation in Parents of Youth with Emotional and Behavioral Disorders. J Behav Health Serv Res 46, 306–318 (2019). https://doi.org/10.1007/s11414-018-9627-6
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DOI: https://doi.org/10.1007/s11414-018-9627-6