Impact of Clinical Systems Annotated Bibliography

1 Sample Annotated Bibliography Student Name Program Name or Degree Name (e.g., Master of Science in Nursing), Walden University COURSE XXX: Title of Course Instructor Name Month XX, 202X 2 Sample Annotated Bibliography Autism research continues to grapple with activities that best serve the purpose of fostering positive interpersonal relationships for children who struggle with autism. Children have benefited from therapy sessions that provide ongoing activities to aid autistic children’s ability to engage in healthy social interactions. However, less is known about how K–12 schools might implement programs for this group of individuals to provide additional opportunities for growth, or even if and how school programs would be of assistance in the end. There is a gap, then, in understanding the possibilities of implementing such programs in schools to foster the social and thus mental health of children with autism. Annotated Bibliography Kenny, M. C., Dinehart, L. H., & Winick, C. B. (2016). Child-centered play therapy for children with autism spectrum disorder. In A. A. Drewes & C. E. Schaefer (Eds.), Play therapy in middle childhood (pp. 103–147). American Psychological Association. https://doi.org/10.1037/14776-014 In this chapter, Kenny et al. provided a case study of the treatment of a 10-year-old boy diagnosed with autism spectrum disorder (ADS). Kenny et al. described the rationale and theory behind the use of child-centered play therapy (CCPT) in the treatment of a child with ASD. Specifically, children with ADS often have sociobehavioral problems that can be improved when they have a safe therapy space for expressing themselves emotionally through play that assists in their interpersonal development. The authors outlined the progress made by the patient in addressing the social and communicative impairments associated with ASD. Additionally, the authors explained the role that parents have in 3 implementing CCPT in the patient’s treatment. Their research on the success of CCPT used qualitative data collected by observing the patient in multiple therapy sessions. CCPT follows research carried out by other theorists who have identified the role of play in supporting cognition and interpersonal relationships. This case study is relevant to the current conversation surrounding the emerging trend toward CCPT treatment in adolescents with ASD as it illustrates how CCPT can be successfully implemented in a therapeutic setting to improve the patient’s communication and socialization skills. However, Kenny et al. acknowledged that CCPT has limitations—children with ADS, who are not highly functioning and or are more severely emotionally underdeveloped, are likely not suited for this type of therapy. Kenny et al.’s explanation of this treatments’s implementation is useful for professionals in the psychology field who work with adolescents with ASD. This piece is also useful to parents of adolescents with ASD, as it discusses the role that parents can play in successfully implementing the treatment. However, more information is needed to determine if this program would be suitable as part of a K–12 school program focused on the needs of children with ASD. Stagnitti, K. (2016). Play therapy for school-age children with high-functioning autism. In A. A. Drewes and C. E. Schaefer (Eds.), Play therapy in middle cildhood (pp. 237–255). American Psychological Association. https://doi.org/10.1037/14776-013 Stagnitti discussed how the Learn to Play program fosters the social and personal development of children who have high functioning autism. The program is designed as a series of play sessions carried out over time, each session aiming to help children with 4 high functioning autism learn to engage in complex play activities with their therapist and on their own. The program is beneficial for children who are 1- to 8-years old if they are already communicating with others both nonverbally and verbally. Through this program, the therapist works with autistic children by initiating play activities, helping children direct their attention to the activity, eventually helping them begin to initiate play on their own by moving past the play narrative created by the therapist and adding new, logical steps in the play scenario themselves. The underlying rationale for the program is that there is a link between the ability of children with autism to create imaginary play scenarios that are increasingly more complex and the development of emotional wellbeing and social skills in these children. Study results from the program have shown that the program is successful: Children have developed personal and social skills of several increment levels in a short time. While Stagnitti provided evidence that the Learn to Play program was successful, she also acknowledged that more research was needed to fully understand the long-term benefits of the program. Stagnitti offered an insightful overview of the program; however, her discussion was focused on children identified as having high-functioning autism, and, therefore, it is not clear if and how this program works for those not identified as high-functioning. Additionally, Stagnitti noted that the program is already initiated in some schools but did not provide discussion on whether there were differences or similarities in the success of this program in that setting. Although Stagnitti’s overview of the Learn to Play program was helpful for understanding the possibility for this program to be a supplementary addition in the K–12 5 school system, more research is needed to understand exactly how the program might be implemented, the benefits of implementation, and the drawbacks. Without this additional information, it would be difficult for a researcher to use Stigmitti’s research as a basis for changes in other programs. However, it does provide useful context and ideas that researchers can use to develop additional research programs. Wimpory, D. C., & Nash, S. (1999). Impact of Clinical Systems Annotated Bibliography

Musical interaction therapy–Therapeutic play for children with autism. Child Language and Teaching Therapy, 15(1), 17–28. https://doi.org/10.1177/026565909901500103 Wimpory and Nash provided a case study for implementing music interaction therapy as part of play therapy aimed at cultivating communication skills in infants with ASD. The researchers based their argument on films taken of play-based therapy sessions that introduced music interaction therapy. To assess the success of music play, Wimpory and Nash filmed the follow-up play-based interaction between the parent and the child. The follow-up interactions revealed that 20 months after the introduction of music play, the patient developed prolonged playful interaction with both the psychologist and the parent. The follow-up films also revealed that children initiated spontaneously pretend play during these later sessions. After the introduction of music, the patient began to develop appropriate language skills. Since the publication date for this case study is 1999, the results are dated. Although this technique is useful, emerging research in the field has undoubtedly changed in the time since the article was published. Wimpory and Nash wrote this article for a specific audience, including psychologists and researchers working with infants 6 diagnosed with ASD. This focus also means that other researchers beyond these fields may not find the researcher’s findings applicable. This research is useful to those looking for background information on the implementation of music into play-based therapy in infants with ASD. Wimpory and Nash presented a basis for this technique and outlined its initial development. Thus, this case study can be useful in further trials when paired with more recent research. Informatics for Health: Connected Citizen-Led Wellness and Population Health R. Randell et al. (Eds.)

© 2017 European Federation for Medical Informatics (EFMI) and IOS Press. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0). doi:10.3233/978-1-61499-753-5-63 63 Shared Decision Making via Personal Health Record Technology for Routine Use of Diabetic Youth: A Study Protocol a Selena DAVIS a,1, Abdul ROUDSARI a, and Karen L. COURTNEY a School of Health Information Science, University of Victoria, Victoria, BC, Canada Abstract. Engaging patients in the self-management decision-making provides opportunities for positive health outcomes. The process of shared decision making (SDM) is touted as the pinnacle of patient-centred care, yet it has been difficult to implement in practice. Access to tools resulting from the integration of all health data and clinical evidence, and an ease of communications with care providers are needed to engage patients in decision making. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Impact of Clinical Systems Annotated Bibliography

Yet there is a scarcity of studies on system design for SDM via PHR. This paper describes a study protocol to identify functional requirements of PHR for facilitating SDM and factors that would influence the embedding of the proposed system in clinical practice. Keywords. Personal health records, shared decision making, normalization process theory, mixed methods, self-management, patient engagement 1. Introduction Today, there is increased interest in health information technology (HIT) interventions that engage patients in decision making as part of self-management. Shared decision making (SDM) has been suggested as an optimal approach to making healthcare decisions and today touted the pinnacle of patient-centred care [1]. SDM is a collaborative process that allows patients and their providers to make decisions together, taking into account the best available evidence and the patient’s values and preferences to identify the best strategy at a particular point in time [2]. While there is associated evidence of patient outcomes [3], a few obstacles still slow SDM spread in practice [4]. For patients to be effective and engaged participants in SDM, they require access to their healthcare information and decision support tools. Increasingly, patients are engaged through online, mobile and digital routes [5]. A personal health record (PHR) is an internet-based application that allows patients to access, input, manage and share their health information, access decision support tools and education, and to communicate with care providers [6]. PHRs remain underutilized, but are a major opportunity to improve patient engagement and decision making [7]. To effectively engage patients and support SDM, systems must be designed for that purpose [8]. But using such systems in routine clinical practice is still problematic; a translational gap that Normalization Process Theory (NPT), may be able to address [9]. 1 Corresponding Author: Selena Davis, School of Health Information Science, University of Victoria, PO Box 1700, HSD A202, Victoria, BC V8W 2Y2; Email: daviss@uvic.ca. 64 S. Davis et al. / Shared Decision Making via Personal Health Record Technology Evaluation with NPT focuses on a specific set of activities that bring about the embedding of a complex healthcare practice. NPT describes those determinants that influence the promotion or inhibition of complex interventions and offers a foundation on which the likelihood of successful implementation can be judged [10]. The target population of the study protocol is youth (18-24 years old) with Type 1 diabetes (T1DM). T1DM is the second most common chronic disease in children [11] and an increasing prevalence [12]. While youth can perform diabetes self-management tasks, they still need help making decisions. In terms of engaging diabetic youth in selfmanagement decision making, SDM provides opportunities for positive health outcomes [13]. Still, there are few targeted interventions to support their involvement in SDM [14]. 1.1. Objectives The research objectives are: To analyze the functional requirements of an integrated shared decision making– personal health record (iSDM-PHR) system Impact of Clinical Systems Annotated Bibliography

● To explain the factors that promote or inhibit the incorporation of iSDM-PHR into routine clinical practice ● To describe the ‘normalization potential’ of iSDM-PHR ● 1.2. Guiding Theoretical Framework NPT matches four social processes (the “what”) with mechanisms (the “how”) and describes the participants’ actions which positively affect the embedding of a healthcare intervention. Using iSDM-PHR, the sixteen analytical NPT claims are applied (Table 1 adapted from [15][16][17]). Table 1. NPT Theoretical Framework for SDM via PHR Mechanisms Meaning and Sensemaking work Normative restructuring Understand how SDM via PHR differs from existing practice Reworking conventions and group processes Shared understanding of the purpose and expected benefits Enacting practices Projecting practices into the future Understand the specific tasks and responsibilities in implementation of SDM via PHR Understand the value and benefits of SDM via PHR Social Process Commitment and Engagement work Enacting work Support and resource SDM Believe it is right for via PHR within them to be involved its social contexts ‘Buy into’ the idea Create and of SDM via PHR communicate and persuade others knowledge about to participate SDM via PHR Operationalize tasks of SDM Willing to drive via PHR and implementation of produce SDM via PHR outcomes Commit and Allocate roles contribute to SDM and via PHR for responsibilities sustainability clearly Appraisal work Identify or measure SDMPHR benefits and issues Shared evaluation of contributions to and value of SDM via PHR Evaluate contributions to and value of SDM via PHR Attempts to alter SDM via PHR are made S. Davis et al. / Shared Decision Making via Personal Health Record Technology 65 2. Methods 2.1. iSDM-PHR application Based on a conceptual framework developed by Davis et al. [18], the design of an iSDMPHR system was developed and explained elsewhere [19]. The proposed iSDM-PHR ecosystem is described as an internet-based, electronic health record (EHR) systems environment. It is complemented by autonomous integrated applications whereby data is kept separate from the applications, enabling greater innovation in the applications [20], and built on standards for privacy, security and data exchange, and uses a messaging system for timely, asynchronous interactions . In this way, provider EHR systems and iSDM-PHR may interact to exchange relevant data and communicate. Patients access the system anywhere, anytime using any device with internet access. The iSDM-PHR functional model maps the elements in the SDM process with a PHR function by patient activity with specific system actions for patients. 2.2. Study Design The evaluation strategy involves a two-phased, sequential assessment. Impact of Clinical Systems Annotated Bibliography

The protocol is under review by the University of Victoria Human Research Ethics Board. Phase 1 will inform the iSDM-PHR functional model via task/function mapping, a user-centred design approach. This process specifies the users’ functional requirements of the system. The resultant user-validated, functional model of iSDM-PHR will be used in Phase 2. Phase 2 will assess the ‘normalization potential’ of the system from multiple user type perspectives. A pre-implementation assessment will be used to identify factors for a successful implementation. Semi-structured interviews will be used to explore participants’ opinions of iSDM-PHR. Concurrently, the Normalization MeAsure Development (NoMAD), a NPT-based survey instrument [21], will be used to measure implementation processes and predictive relationships between these processes and outcomes. Qualitative and quantitative data will be equally-weighted. 2.2.1. Phase 1 Functional Requirements Evaluation A purposeful, maximum variance recruitment strategy will be used to gain different perspectives of the requirements of the two target groups: T1DM youth and healthcare providers (physician specialists and certified diabetes educators). The final number of participants will be determined when saturation is reached within data collection; 10-20 participants per target group is anticipated. Basic descriptive data will be collected including use of technology. Data will be primarily collected via a functional model validation activity and analyses will occur simultaneously. Participants will match a user task with the system function using a task/function matrix, adapted from Maguire [22]. Matching is accomplished when the user identifies a system function for a given SDM task as critical to task, for occasional use, or not useful/applicable to the task. Data collected from each additional participant will be iteratively compared. A functional model will be indicated by 75% of tasks being reliably mapped to functions. As a secondary method of data collection, a brief, semistructured individual interview will commence in order to clarify and to gain a richer understanding of the participant responses in the functional model validation activity. 66 S. Davis et al. / Shared Decision Making via Personal Health Record Technology 2.2.2. Phase 2 Implementation Process Evaluation Purposeful, maximum variance sampling will be used to assess the ‘normalization potential’ of iSDM-PHR. The three target groups for this phase are T1DM youth, healthcare providers, and organizational providers (responsible for the design, development, implementation or management of EHR systems). Phase 1 participants may participate in Phase 2. Based on similar studies [7][23][24], a study sample of 80 participants (about 20 from each target group) is planned. Data will be collected concurrently using the following manner: (i) online NoMAD instrument. The NoMAD instrument uses a 5-point Likert scale for 20 items reflecting the full range of normalization processes and 3 items to assess participants’ general expectations of the implementation process; (ii) small fixed response survey of practice related outcomes – e.g. “I feel that iSDM-PHR would positively impact engagement in self-management decision making?”; and (iii) semi-structured phone interviews that will use an interview guide (Table 2) and be audiotaped and transcribed. Table 2. Sample Interview Questions NPT Social Process Mechanism Meaning and Sensemaking work Projecting practices into the future Normative restructuring Normative restructuring Commitment and Engagement work Enactment work Appraisal work Projecting practices into the future Reworking conventions and group processes Enacting practices Questions/Probes using the NPT theoretical framework What do you understand to be the value, benefits and importance of iSDM-PHR? Impact of Clinical Systems Annotated Bibliography

How would you describe iSDM-PHR? Do you believe it’s right to engage in the use of iSDM-PHR? How does the iSDM-PHR affect roles and responsibilities or training needs? Will iSDM-PHR make people’s work easier? Will it impact division of labour, resources, power, and responsibility? How will you judge the value of iSDM-PHR in terms of the effects on you? Demographic, clinical, instrument and survey data will be summarized via descriptive statistics using SPSS to indicate where participants express more positive or negative responses and to inform associations between factors influencing normalization and engagement in decision making. Data from interviews will be analysed with NVivo 11 Pro and coded using a NPT-based coding frame. Salient themes will be grouped to reflect the promoting or inhibiting factors of iSDM-PHR into routine practice for diabetic youth. Finally, both quantitative and qualitative data will be merged to a unified whole and analyzed as a composite picture for the purposes of complementarity in the interpretation and description of the o … Impact of Clinical Systems Annotated Bibliography