| Literature DB >> 34744483 |
Rita Francese1, Michele Risi1, Genoveffa Tortora1, Francesco Di Salle1.
Abstract
The Therapeutic Alliance (TA) between patient and health provider (therapist or clinician) is one of the most relevant factors for the success of a therapy. In the case of people suffering from Autism Spectrum Disorder (ASD), the alliance is extended to all the people involved in their care (i.e., teachers, therapists, clinicians, relatives). In this paper, we propose a multimedia application named Thea for empowering the TA of children with ASD by improving the communication among the TA members, sharing guidelines, multimedia contents, and strategies to comply with challenging behaviors and progress with particular attention towards end-users who are occasional smart-users. A detailed process for empowering the TA members by enhancing the informed interaction among all of them is proposed and implemented. A vocal assistant also supports patients/caregivers and therapists in documenting their activity with the person with ASD by recording videos in a free-hand modality. After a contextual analysis based on Thematic Analysis Template, Thea has been implemented using a user-centered development approach. We performed three iterations involving the end-users. A user study is performed at the third iteration. Results of the user study revealed a positive attitude towards the application. In particular, the perception of empowerment of participants increased after the tool had been used. We also highlighted the guidelines and tools that may be adopted for empowering different kinds of patients. The first results seem to suggest that the use of Thea may increase the belief of the caregivers of a person with ASD to be able to better take care of her, in a more controlled and informed way.Entities:
Keywords: Autism Spectrum Disorder; Chatbot; Empowerment; Multimedia Interaction; Therapeutic Alliance
Year: 2021 PMID: 34744483 PMCID: PMC8557110 DOI: 10.1007/s11042-021-11520-9
Source DB: PubMed Journal: Multimed Tools Appl ISSN: 1380-7501 Impact factor: 2.757
Fig. 1Therapeutic Alliance empowerment factors
Therapeutic Alliance empowerment goals
| Capacities or beliefs | |
|---|---|
| Self-efficacy | Self-efficacy refers to individuals’ assessments of their effectiveness or competency to perform a specific behavior successfully [ |
| Partnership | Adopting a partnership style within the healthcare relationship lets the patients be the experts by experience, while clinicians and therapists are the experts in the knowledge of the disease. |
| Knowledge & Skills | Enabling factors to be able to engage with the healthcare provider. |
| Personal control | Based on the person’s belief that the patient has the power to produce positive results. |
| Feeling respected | When a patient (or her caregivers) feels to be respected by the health providers communication and motivation improve. When patients (or her caregivers) are respected and they trust providers, they more likely seek care, establish a more strict relationship with the provider and follow the therapy. |
| Communication | The communication among the members of TA is good. They share their experience in patient support/advocacy group for sharing common goals, also through social network. |
| Motivation | Motivated patients increase their self-efficacy and obtain better results. |
| Decision-making | Actively make informed decisions about their own health and choose realistic objectives. |
| Self-management | Patients have in charge their self-management behavior and adhere to a prescribed therapeutic regimen. |
| Collaboration | The patient works together with the TA members in pursuing mutually negotiated goals. |
Fig. 2The adopted user-centered methodology
Thematic Analysis Template for caregivers (family members, teachers, personal assistants and the patient)
| 1 | Shared decision-making and Integration of patients’ views | a. Describe how the therapy is managed and delivered by your provider. |
| b. Reveal how the provider involves you in the decision-making process. | ||
| c. How are the goals of your therapy fixed? | ||
| d. Describe how your knowledge on your disease is helpful in the communication with your provider. | ||
| e. Reveal if you feel respected during the communication with your provider. | ||
| f. Describe the pros and cons of the collaboration and how it may be improved to reach a successful Therapeutic Alliance. Which support may be provided by the technology? | ||
| 2 | Support to self-care and self-management | a. Please, describe how you adhere and manage by yourself a prescribed therapeutic regimen and the activities of self-management and self-care you perform. |
| b. Reveal what the positive and negative aspects were occurring when you/the patient try to solve his health problems when they happen. | ||
| c. Describe your perception on your (the patient) capacities of producing positive results and make informed decision about your health. | ||
| d. What were you/they not able to do in your self-care and self-management? What helped you/them to get what you/they need? Does the provider help you to be autonomous in your self-care and self-management? |
Thematic Analysis Template for clinicians, health managers and health researchers
| 1 | Communication | What do you think people need to communicate/be informed on the therapy care service? |
| 2 | experience | Reveal what the positive and negative points were encountered when the various actors (physician, therapist, teacher, caregiver, patient) cooperated in the therapy subministration. |
| 3 | Improvements | Reveal what can be done better to improve the previous negative points |
| 4 | Empowerments | Describe health interventions or health services approaches that promote alliance empowerment. Which support may be provided by the technology? |
| 5 | Report | What patient reported outcomes do you think are useful to assess the therapy results? |
Results of the TAT analysis for medical staff
| 1 | Communication | All the participants agreed that the involvement of all the caregivers of a child with ASD is one of the most important success factors, because improvements may be reached if the therapy is applied every day, all the day. They periodically meet the caregivers (generally monthly), including teachers. The clinician has many patients and answers only in case of real difficulty ( |
| 2 | experience | Clinicians lamented that often the caregivers forget to annotate relevant information, such as the one concerning challenging problems ( |
| 3 | Improvements | All agree on the need of having a medical record in common with all involved people, in such a way to share signs of progress ( |
| 4 | Empowerment | The caregivers may be empowered if they are more informed. In any case. they should share the goals with the providers and also learn by-examples how to conduct self-management activities at home while respecting the child’s attitudes ( |
| 5 | Report | All the participants agreed that the task activity should be measurable. The most relevant metrics are the autonomy level on which a child may perform a task (e.g., with total physic aid, with partial physic aid, with vocal aid, autonomously). Two other relevant measures are the time for accomplishing the task and the task frequency ( |
Questionnaire for the Therapeutic Alliance actors of a children with ASD
| Q1 | I use the smartphone for communicating with the other people involved in the care of the special needs person. |
| Q2 | I use emails for communicating with the other people involved in the care of the special needs person. |
| Q3 | I use apps (e.g., Whatsapp, Messenger, Instagram, Facebook) for communicating with the other people involved in the care of the special needs person. |
| Q4 | I use Face-to-face for communicating with the other people involved in the care of the special needs person. |
| Q5 | It is useful to promptly communicate with the other people involved in the care of the special needs person. |
| Q6 | It is useful to use a single means of communication. |
| Q7 | It is useful to have the patient’s information needed for a diagnosis all in a single place. |
| Q8 | It is useful to have the material to evaluate the patient progress in a single place. |
| Q9 | It is useful to have at disposal examples of the activity conducted during the therapy for all the caregivers. |
| Q10 | It is useful to have an electronic diary where to annotate the challenging behaviors. |
| Q11 | It is useful to collect data to compile the ABC table |
| Q12 | I’m satisfied of the communication between the people that take care of the special needs person. |
| Q13 | If no, describe these problems (open question). |
| Q14 | (only for clinicians and therapists) Which task progress metrics do you consider relevant? (suggested: Autonomy Level, Frequency, Time to accomplish a task, more than one answer is allowed and additional may be added). |
Fig. 3The survey results
Task Analysis and related empowerment objectives
| T1 | Adherence to the treatment objectives | K&S | SE, PC | No | |
| T2 | Learning how to perform the therapy | K&S | SE, PC | MOT | Yes |
| T3 | Reporting task execution | PC | COM | Yes | |
| T4 | Reporting challenging behavior | COM | Yes | ||
| T5 | Monitoring progress | PC | K&S | No | |
| T6 | Communicating with the other alliance members | K&S | MOT | No |
First iteration requirements
| Clinician | manage the diagnosis data, the objectives and describe the challenging problem of a patient. |
| Therapist | manage the tasks to be performed;provide guidelines on how to perform each task. |
| Therapist, caregiver | collect reports on the performed activities;provide reports on challenging behaviors. |
| Circle | examine the patient record;monitor signs of progress; communicate on a Therapeutic Alliance common chat; receive notifications when events happens; participate in a community of users for sharing experiences. |
Visibility types
| All | All the people accessing Thea may see the user data. |
| Health providers | The data will be available to all the providers registered in the system for further analysis. |
| Circle | Data are visible only to the members of the Circle. |
Fig. 5Scenario of the Therapeutic Alliance empowerment-driven process
Fig. 4Therapeutic Alliance empowerment-driven process
An example of multimedia task description
| Task | Report challenging behavior activity. |
| Actor. | Patient/caregiver/therapist. |
| Goal. | Report challenging behavior. |
| Control | The user controls the challenging behavior recording by interacting with a vocal chatbot. Also the mobile device GUI supports this operation. |
| Context | Patient’s home or in an external environment. |
| Modeling | The activity diagram with object flow describing the multimedia interaction of the Report Challenging behavior is reported in Fig. |
| Tool | A Google Home communication point may be positioned in each room together with a webcam. The interaction may also occur through a Google assistant on a mobile device. |
| Feedback | Caregivers appreciate this solution a lot for collecting data on challenging behaviors which allows them to maintain their hands free for intervening. |
Fig. 6Model of the Challenging Behavior Reporting process
Fig. 7First prototype screens
Second iteration report
| Prototyping | A running prototype has been developed using the Angular-Ionic-Cordova technology for the development of the mobile application. Ruby on Rails and PostgreSQL are the adopted server-side and DBMS technologies. The choice of using multi-platform technology was due to the need of having the application available in both Android and iOS in a short time. |
| Evaluation | A heuristic evaluation was conducted with a group of 4 HCI experts of the University of Salerno, two of them were parents of a child with ASD, and a therapist. The therapist asked to be able to document challenging problems also by audio. Concerning usability, some buttons were not homogeneous. Some participants manifested difficulty in understanding without help in the use of the application. The colors depicting the levels of a challenging problem were too marked. Some functionalities were difficult to find and this increased the cognitive load. |
Third iteration report
| Prototyping | To assist caregivers in the use of the app, we introduced the chatbot not only for the management of multimedia content during therapy but also as an app assistant, i.e., to explain the app functionalities and help the user in finding the needed features. The chatbot clearly says which tasks it can perform. These tasks should be simple and not ambiguous. We enable people to both interact by the GUI and the vocal input. The chatbot starts by pressing a button always available on each screen of the application or by saying |
| Evaluation | A lab-based user study has been conducted (see Sect. |
https://dialogflow.com
Capacity-Beliefs Empowerment Questionnaire
| S1 | I am sure to be able to solve my therapeutic tasks (Self-Efficacy). |
| S2 | I have an active partnership with my Therapeutic Alliance group (Partnership). |
| S3 | I have enough information for managing my therapy (Knowledge & Skills). |
| S4 | I am sure to be able to solve my therapeutic tasks (Personal Control). |
| S5 | I feel to be accepted and well supported (Feeling Respected). |
| S6 | I am satisfied of the communication with my Therapeutic Alliance group (Communication). |
| S7 | I feel to be involved in my health care (Motivation). |
Example of task set for T2 - Reporting Task Execution
| T4 | Imagine you are in your dining room with your child. Your child is manifesting a challenging behavior. Ask Thea to register the video through the webcam, consult the registration on TV and approve it for saving. |
Fig. 9Boxplots of the Capacity-Belief Questionnaire
Statistics of the Capacity-Belief questionnaire
| PRE | SE | 1 | 8 | 4 | 4.16 | 1.57 |
| PAR | 1.0 | 7 | 3 | 3.48 | 1.36 | |
| KS | 2 | 9 | 4 | 4.58 | 1.73 | |
| PC | 2 | 8 | 4 | 43 | 1.45 | |
| FR | 3 | 9 | 5 | 5.10 | 1.56 | |
| COM | 2 | 9 | 5 | 5.23 | 1.75 | |
| MOT | 1 | 8 | 4 | 4.065 | 1.65 | |
| POST | SE | 3 | 9 | 5 | 5.58 | 1.76 |
| PAR | 1 | 9 | 6 | 5.90 | 2.04 | |
| KS | 4 | 9 | 7 | 7 | 1.65 | |
| PC | 4 | 9 | 8 | 7.01 | 1.50 | |
| FR | 2 | 9 | 7 | 6.36 | 1.59 | |
| COM | 3 | 9 | 7 | 6.581 | 1.523 | |
| MOT | 4 | 9 | 7 | 6.64 | 1.60 |
Summary of the results of the Capacity-Belief Questionnaire
| Self-Efficacy | 0.003 | -0.426 (medium) |
| Partnership | 5.687968e-06 | -0.663 (large) |
| Knowledge & Skills | 4.422434e-06 | -0.671 (large) |
| Personal Control | 1.964025e-08 | -0.819 (large) |
| Feeling Respected | 0.002 | -0.455 (medium) |
| Communication | 0.002 | -0.445 (medium) |
| Motivation | 7.604048e-07 | -0.724 (large) |
Fig. 10Boxplot of Click (a), Time (b) and Satisfaction (c) variables
Statistics of the Usability variables
| NSU | click | 17 | 25 | 22 | 21.39 | 2.29 |
| Time | 173 | 250 | 210 | 212.308 | 21.616 | |
| Satisfaction | 3 | 7 | 5 | 5.15 | 1.28 | |
| SU | click | 17 | 25 | 20.50 | 20.50 | 2.41 |
| Time | 178 | 230 | 197 | 197.44 | 13.544 | |
| Satisfaction | 4 | 7 | 7 | 6.17 | 1.04 | |
| Overall | click | 17 | 25 | 21 | 20.87 | 2.36 |
| Time | 173 | 250 | 199 | 199 | 13.67 | |
| Satisfaction | 3 | 7 | 6 | 5.74 | 1.24 |
Summary of the results of the Usability variables
| Click | 0.638 | - |
| Time | 0.025 | 0.483 (large) |
| Satisfaction | 0.029 | -0.444 (medium) |
Fig. 11Boxplots of the UEQ Questionnaire