Browsing by Author "Nikkhah, Sarah"

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    An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study
    (JMIR, 2024-10-17) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Holden, Richard J.; Miller, Andrew D.; Pediatrics, School of Medicine
    Background: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers' perceptions and areas for improvement, and validate the app's design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child's medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements.
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    An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study
    (JMIR, 2022-03-16) Mueller, Emily L.; Cochrane, Anneli R.; Campbell, Madison E.; Nikkhah, Sarah; Miller, Andrew D.; Pediatrics, School of Medicine
    Background: Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies. Objective: The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. Methods: We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International). Results: This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. Conclusions: The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.
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    Coming to America: Iranians' use of Telegram for immigration information seeking
    (Emerald, 2020) Nikkhah, Sarah; Murillo, Angela P.; Young, Alyson Leigh; Miller, Andrew D.; Human-Centered Computing, School of Informatics and Computing
    Purpose This study examines Iran-US migrants' use of the most popular messaging application in Iran—Telegram—and shows how they use it to manage their migration information practices. Design/methodology/approach This study took a qualitative observation approach. Over the course of six months, over 80 h of observations were conducted on Iran-US migration-related settings within Telegram. Findings This work identifies the information practices that emerge as users seek and share information related to Iran-US migration. Telegram plays a vital role across the immigration stages, predominantly in the pre-migration stage. This work also shows how the constraints and features of Telegram influence users' information sharing and seeking practices. Practical implications The findings support the implication that a social media platform that provides multiple ways to interact is likely to better support niche or unanticipated uses. Originality/value This study is the first of its kind to explore Iranian Immigrants information practices in the US. The immigration information practices observed during this study represent a valuable example of end-user appropriation within extraordinary constraints, which may be of use in other information-seeking contexts where dedicated or bespoke tools are impractical or ill-advised.
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    Family Resiliance Technologies: Designing Collaborative Technologies for Caregiving Coordination in the Children's Hospital
    (2023-03) Nikkhah, Sarah; Miller, Andrew D.; Bolchini, Davide; Martin-Hammond, Aqueasha M.; Murillo, Angela P.; Pratt, Wanda
    Each year, the parents of approximately 15,300 kids will hear the words “Your child has cancer.” Families with hospitalized children must process a lot of stress and play a vital role in their child’s care. Hospitalized children need care and assistance processing medical information and going through their treatment. Therefore, their families must take on new responsibilities such as providing care, processing medical information, getting ready for the extensive and sometimes painful treatments, and facing the fear of losing their child. They must also adjust their daily duties, chores, and jobs to provide care to their hospitalized child. Previous research on families with hospitalized children shows that a lower level of stress and a higher level of communication among family members are significant predictors of long-term health outcomes after hospitalization. Social work and family therapy studies researched family resilience as these families’ ability to process and handle stress as a system. However, few technologies are designed to increase family resilience and support the family’s communication and collaboration when a child is hospitalized. My aim in this dissertation is to understand how collaborative technologies can help family members of hospitalized children (family caregivers) collaborate and coordinate with each other during the stressful extended hospitalization period. Through qualitative interviews and elicitation activities followed by iterative cycles of design, I showed that Family Resilience can be used as a lens to understand families’ collaborative processes and guide the design of collaborative technologies to support these families in adapting when they are under stress, and their usual routines as a family are constantly changing due to their child’s hospitalization. Therefore, there is an opportunity for HCI and CSCW to design collaborative technology that supports family resilience processes for families facing a crisis, such as having a hospitalized child with cancer.
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    Helping Their Child, Helping Each Other: Parents’ Mediated Social Support in the Children's Hospital
    (ACM, 2021-10) Nikkhah, Sarah; John, Swaroop; Yalamarti, Krishna; Muller, Emily L.; Miller, Andrew D.; Human-Centered Computing, School of Informatics and Computing
    During a health crisis, such as the hospitalization of a child with a serious illness, families must adjust and support each other in coordinating care. CSCW researchers have shown the potential for collaborative technologies to enhance social support in different settings. However, less is known about the potential for CSCW technologies to augment social support practices within family caregiving circles. In this poster, we describe findings from 14 interviews with parents of children hospitalized for cancer treatment. We categorized the support practices between parents and found that they rely heavily on technology to support each other from a distance. We identified opportunities for designing future collaborative technology to augment social support in caregiving teams.