Designing Technology to Address Parent Uncertainty in Childhood Cancer

Morrison, Caroline F.; Szulczewski, Lauren; Strahlendorf, Laura F.; Lane, Jack; Mullins, Larry L.; Pai, Ahna L. H.

doi:10.1097/ans.0000000000000100

Cited by 12 publications

(27 citation statements)

References 4 publications

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“…Uncertainty continues into adolescence where communicating uncertainty is a seeming effort to express and manage one's inability to make sense of what is happening . Although there are a limited number of intervention studies targeting uncertainty, education and psychosocial support and the creation of new health technology may help express and manage these feelings of uncertainty for children, adolescents, and their families . Acknowledging uncertainty as part of the cancer experience may heighten an awareness of the child's hopes and fears leading to a greater understanding of the challenges they face and promote a more open and honest communication .…”

Section: Discussionmentioning

confidence: 99%

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

et al. 2019

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Background Sisom is an interactive computerized tool shown to improve communication between children with cancer and their clinicians in Norway. Concerns that Sisom may prompt disclosure of potentially distressful symptoms during a busy clinical day may deter implementation in practice in other settings. Aim The purpose of this study was to describe the questions, concerns, and comments that unfolded between children and their parents during the children's use of Sisom within a research context. Methods A secondary analysis of qualitative interview transcripts derived from the interactions of 39 children with cancer aged 6 to 13 years with Sisom from two previous studies was performed. Thirty‐one of these interactions had at least one parent present during testing. Data were coded and analyzed using content analysis techniques involving an iterative process of data reduction, display, conclusion drawing, and verification. Results Sisom elicited a verbal response to at least one symptom in the majority of children (n = 33, 85%) and prompted at least one input in 23 of the parents (74%). Sisom prompted children to (1) discuss their thoughts and feelings out loud, (2) categorize their symptoms as pleasant or unpleasant, and (3) reflect on their illness experiences with varying degrees of certainty. Parental input consisted of (1) providing clarification, (2) validating their child's responses, (3) guiding their child's responses, (4) responding on behalf of their child, and (5) making jokes or casual remarks. Conclusion Sisom prompts children to discuss their thoughts and illness experiences with their parents and to express their emotions. Sisom may be a useful tool to enhance the communication between children with cancer and their parents and clinicians, which may help them express their needs in the health care setting.

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Section: Discussionmentioning

confidence: 99%

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

et al. 2019

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“…Almost all articles (93%) (13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26) are from the last five years. Seven (46%) (13,(16)(17)20,22,(24)(25) are from the two last years.…”

Section: Resultsmentioning

confidence: 99%

“…Almost all articles (93%) (13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26) are from the last five years. Seven (46%) (13,(16)(17)20,22,(24)(25) are from the two last years. In the majority (87%) (13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(24)(25) , was used some qualitative method for evaluation of the mobile technology during its development, or the process and development stages were only described and classified as level VI (12) .…”

Section: Resultsmentioning

confidence: 99%

Mobile technologies in the Nursing area

et al. 2018

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Objective: To identify in the literature studies on mobile technologies in Nursing. Method: Integrative literature review in which was used the Population, Interest and Context (PICo) strategy, the tool of the National Library of Medicine for formulation of the research question, and search without a determined period of time in the following bibliographic databases: Medical Literature and Retrieval System onLine/PubMed®), Cumulative Index to Nursing & Allied Health Literature (CINAHL), SCOPUS (Elsevier), Latin American and Caribbean Literature in Health Sciences (LILACS) and Nursing Database (BDENF). Data collection period was from January to March 2017. Results: Fifteen articles were selected, in which were addressed mobile technologies in Nursing for nurses, undergraduate students and patients. Conclusion: Mobile technologies in Nursing are a recent theme and enable care data sharing, experience acquisition by undergraduate students and patient empowerment.

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“…A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers [12]. The first phase consisted of semi-structured interviews with children with cancer and their parents.…”

Section: Methodsmentioning

confidence: 99%

“…These prototypes were tested for their ease of navigation and aesthetic before being turned into a final design. For a full description of this process see Morrison et al [12]. …”

Section: Methodsmentioning

confidence: 99%

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App

Marsolo¹,

Shuman²,

Nix³

et al. 2017

JMIR Res Protoc

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BackgroundParents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization.ObjectiveThe aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child’s illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress.MethodsA 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children’s Oncology Group (COG) and care teams within Cincinnati Children’s Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time.ResultsThe ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient’s current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier.ConclusionsWe successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success.Trial RegistrationClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT)

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Designing Technology to Address Parent Uncertainty in Childhood Cancer

Cited by 12 publications

References 4 publications

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

Mobile technologies in the Nursing area

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App

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