"Help your keiki": Development and implementation of a consumer-centric website on youth evidence-based practices
Authors: Jaime P. Chang and Brad Nakamura, PhD
Youth with mental health problems benefit from evidence-based practices (EBPs), or treatments with controlled empirical support (Chorpita, & Daleiden, 2009). However, despite significant attempts for broadly disseminating and implementing (D&I) (McHugh, & Barlow, 2010) EBPs most therapists in community settings report not using them (Daleiden, Lee, & Tolman, 2004). Along these lines, D&I efforts continue to be of great importance. Within the state of Hawai’i, formal D&I endeavors began when its Child and Adolescent Mental Health Division (CAMHD) established the Empirical Basis to Services Task Force in 1999 to identify EBPs found in the scientific literature and disseminate summary findings locally and nationally through various technical reports (Chorpita, Yim, Donkervoet, Arensdorf, Amundsen, McGee, et al. 2002). Unlike most other similar efforts at that time, this committee was truly interdisciplinary in nature, and was composed of numerous stakeholder groups (psychology, psychiatry, social work, nursing, parent partners) from a wide diversity of settings. As the task force evolved into a standing quality assurance council within CAMHD, the group renamed itself the Evidence-Based Services (EBS) Committee in 2002 and over the past 10 years has continued to serve as an active community-based mechanism for a wide array of science-practice integration initiatives (Nakamura, Chorpita, Hirsch, Daleiden, Slavin, Amundson, & Vorsino, 2011). We will expand upon one such development for the purposes of this paper, namely the committee’s recent work on increasing consumer and parent knowledge of, and demand for, youth EBPs. Such a consumer-centric approach seems to hold promise for the overall D&I movement.
There is increasing recognition that consumer collaborations regarding the development, implementation and evaluation of service delivery systems may benefit overall D&I efforts (Sanders, & Kirby, 2012). Specifically, most initiatives to date have focused on clinicians and the systems in which they serve, and consumer involvement should be viewed as an alternative and complementary approach to aiding more traditional D&I work. Obtaining consumer perspectives informs researchers about the extent to which EBPs are working or accepted in local settings (Stirman, Crits-Cristoph, & DeRubeis, 2004). A consumer driven approach may also help to increase awareness of the existence of EBPs, improve understanding of psychological services, and ultimately increase the demand for clinicians that are trained in EBPs (Santucci, McHugh, & Barlow, 2012). Finally, it has been suggested that enhancing the role of the consumer in the services they receive improves the quality, ecological fit, and reach of interventions (Sanders et al, 2012).
Generally speaking, findings across consumer-centric studies focusing on parent perspectives of youth mental health treatments point to three conclusions. First, parents as consumers strongly prefer programs that are based on extensive research (Spoth, & Redmond, 1993) (Flynn, 2005), suggesting that parents may generally have favorable attitudes towards EBPs. Second, higher parent knowledge of effective treatments for youth is associated with greater acceptability of those services (Bennet, Power, Rostain, & Carr, 1996) and a higher likelihood of enrolling in an EBP (Corkum, Rimer, & Schachar, 1999). Third, parent consumers provide researchers and clinicians with unique and valuable information regarding factors that influence their treatment decisions. Additionally, providing parents with knowledge about interventions available for their children is hypothesized to create a sense of empowerment that may lead to improved quality of care, increased accountability, and better outcomes (Gruttadaro, Burns, Duckworth, & Crudo, 2007). Despite the strong rationale for engaging consumers in D&I efforts, only a small percentage of parents receive (Sanders et al., 2007) or are aware of the existence of EBPs (Tanenbaum, 2008).
Therefore, it has been suggested that social marketing strategies aimed at consumers that identify the benefits of EBPs and provide information on how and where to access resources may increase demand for these types of practices (Santucci et al., 2012).
Given the findings above, members of the EBS Committee began development of a consumer-oriented website in 2009 aimed at disseminating information about EBPs to parents and consumers in the state of Hawai‘i. The “What Works: Finding Help for Your Keiki (HYK)” subcommittee is an interdisciplinary workgroup, within the overall committee, composed of various stakeholders in child and adolescent mental health (e.g., parent partner groups, CAMHD’s Clinical Services Office & Research and Evaluation Team, University of Hawaii at Mānoa Psychology). Over the course of two years, meetings were held at least once per month to develop site content in line with the committee’s previous work for defining EBPs, while placing a strong emphasis on the parent perspective for psychological treatments. Consistent with previous technical reports, youth EBPs were initially conceptualized at both the 'package' level (interventions with similar theoretical underpinnings that shared a majority of their clinical components) as well as at the 'element' level (discrete clinical techniques or strategies used as part of a larger intervention plan such as a manualized treatment program) (Chorpita, Becker, & Daleiden, 2007). For the HYK website, however, the committee purposefully modified several standing guideposts and findings from the two technical reports it had come to rely on over the past years (i.e., Chorpita and Daleiden’s (2009) “CAMHD Biennial Report: Effective Psychosocial Interventions for Youth with Behavioral and Emotional Needs” and the American Academy of Pediatrics’ (2012) “Evidence-Based Child and Adolescent Psychosocial Interventions”). Specifically, EBS Committee parent partner members from two of our system’s youth consumer advocacy groups – Hawaii Families As Allies (HFAA) and the Special Parent Information Network (SPIN) – lead the charge for innovation in the following ways. First, we distilled the overall volume of technical report findings to what parent partners felt would be more manageable for consumer audiences. Specifically, rather than report on all common elements and packages with empirical support, the committee moved to highlight only the top five practice elements and top three packages per problem area (e.g., anxiety, depression, inattention/hyperactivity). Further, if the committee judged supporting packages to be conceptually redundant with the top five common elements, packages were not reported on the HYK website. For example, although the discrete technique of exposure was indicated among the top five common elements for anxiety and exposure therapy was among the top three packages for this same problem area, the strategy of exposure was only reported once on the website to avoid potentially confusing parents. Although this approach drastically reduced the total number of reported common elements and packages (e.g., from 54 to eight for anxiety), parent partners strongly believed that the benefit of focused brevity outweighed the potential cost of confusing and overwhelming parents.
Second, although our parent partners fully embraced defining EBPs at the package and element levels, they felt that trying to firmly delineate between packages and techniques within the context of large-scale penetration to parents would prove difficult. Further, they felt that terms ‘package’ and ‘common element’ were not particularly parent-friendly, and instead moved towards grouping the top common elements and packages under the headings of (a) “Keiki (Child) Skills” or coping skills for children, (b) “Parent Tools” or skills parents, caregivers, or therapists can use to support a youth, and (c) “Treatments that Work” which described treatment packages. Third, given the consumer-centric focus of the HYK website, significant attempts were made to use parent-friendly language for all site content. Specifically, the committee worked collaboratively to translate any text that parent partners felt were too much like jargon. In fact, our parent partners ultimately reviewed all site content for parent-friendliness prior to launch. Even the title of the website, with its explicit use of the word “keiki” (which means child in the Hawaiian language), is an outgrowth of parent input. Finally, parent partners played a key role for developing and maintaining HYK’s overall vision and mission. As one example, they felt that the site’s original focus of simply providing parents with information on EBPs was too narrow. We were told that we needed to do better. Under their direction, we developed other resources on our website such as: (a) What to expect with a good therapist (e.g., “Provides updates throughout the course of therapy”), (b) Questions to ask your child’s therapist (e.g., “How will you monitor her progress?”), (c) Helpful Websites/More Resources, and (d) Finding help (how to look for treatment services).
Since the website’s launch in the summer of 2012, we started site traffic monitoring and have also moved forward with a social marketing campaign to spread the word about the site. With regard to site monitoring, monthly statistics using Google Analytics are collected in order to examine longitudinal data on website usage and views in order to steer marketing strategies. Data indicates that site visits have steadily risen since its launch, especially in response to outreach efforts to parents, including numerous initiatives that are currently underway. For example, we are in the process of working with our state’s regional family guidance centers so that all families receive information on the website upon enrolling for CAMHD services. Additionally, we have begun reciprocal linking with other youth mental health websites, such as Effective Child Therapy. Although only time will tell, it is hoped that the website will indeed continue to gain momentum for reaching large amounts of consumers and youth, and in turn increase their knowledge of and demand for EBPs.
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Jaime P. Chang is a PhD candidate in the Clinical Studies Program at the University of Hawai’i at Mānoa (UHM). Her current research focuses on the dissemination and implementation of youth evidence-based practices, particularly with consumer populations. Jaime’s clinical work has included the assessment and treatment of children and adolescents at the Center for Cognitive Behavior therapy at UHM, integrated behavioral health care in rural communities with I Ola Lāhui, and substance dependence treatment at Kū Aloha Ola Mau.
Brad Nakamura, PhD is a fifth-year assistant professor at the University of Hawai’i at Mānoa (UHM). His current program of research entails examining efforts at disseminating and implementing youth mental health evidence-based practices (EBPs) into large public mental health sectors. Within the state of Hawaii’s Child and Adolescent Mental Health Division (CAMHD), he is co-chair of the Evidence-Based Services (EBS) Committee, an interdisciplinary network focused on promoting EBPs within Hawaii’s system of care. Dr. Nakamura is also the consulting Clinical Psychologist at CAMHD’s Honolulu Family Guidance Center, the public regional family services coordination branch for the greater Honolulu area. He is currently a co-director of the Center for Cognitive Behavior Therapy at UHM, a research, training, and therapy clinic that specializes in internalizing and youth externalizing disorders. Finally, he has recently served as Leader (2008-2010) and Past Leader (2010-2012) of the Dissemination and Implementation Science Special Interest Group within the Association of Behavioral and Cognitive Therapies.