Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children With Cancer and Their Caregivers

Mueller, Emily L.; Cochrane, Anneli R; Moore, Courtney; Jenkins, Kelli; Bauer, Nerissa S.; Wiehe, Sarah E.

doi:10.1097/mph.0000000000001826

Cited by 12 publications

(11 citation statements)

References 24 publications

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“…The research team, consisting of health communication, pharmaceutical, and medical scholars with high levels of expertise, collaborated with Research Jam, Indiana Clinical and Translational Sciences Institute's Patient Engagement Core, an interdisciplinary group of researchers with experience in patient engagement, human-centered design research, participatory design, and communication design. Research Jam assists individual investigators by engaging stakeholders in a human-centered design approach to data collection, analysis, synthesis, and solution development [ [19] , [20] ].…”

Section: Methodsmentioning

confidence: 99%

A novel qualitative approach for identifying effective communication for recruitment of minority women to a breast cancer prevention study

Ridley-Merriweather

Head

Younker

et al. 2022

Contemporary Clinical Trials Communications

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Section: Methodsmentioning

confidence: 99%

A novel qualitative approach for identifying effective communication for recruitment of minority women to a breast cancer prevention study

Ridley-Merriweather

Head

Younker

et al. 2022

Contemporary Clinical Trials Communications

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“…Poorly organized home care services caused a sense of insecurity in caregivers [ 92 ]. Long waiting times and lack of a comfortable environment during clinic visits can amplify unpleasant caregiver emotions [ 93 ].…”

Section: Factors Influencing Informal Cancer Caregivingmentioning

confidence: 99%

Understanding and Supporting Informal Cancer Caregivers

Molassiotis

Wang

2022

Curr. Treat. Options in Oncol.

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Opinion statement Informal caregivers invest a significant amount of time and effort to provide cancer patients with physical, psychological, information, and social support. These challenging tasks can harm their own health and well-being, while a series of social-ecological factors may also influence the outcomes of cancer caregiving. Several instruments have been developed to help clinicians and researchers understand the multi-dimensional needs and concerns of caregivers. A growing body of evidence indicates that supportive interventions including psychoeducation, skills training, and therapeutic counseling can help improve the burden, information needs, coping strategies, physical functioning, psychological well-being, and quality of life of caregivers. However, there is difficulty in translating research evidence into practice. For instance, some supportive interventions tested in clinical trial settings are regarded as inconsistent with the actual needs of caregivers. Other significant considerations are the lack of well-trained interdisciplinary teams for supportive care provision and insufficient funding. Future research should include indicators that can attract decision-makers and funders, such as improving the efficient utilization of health care services and satisfaction of caregivers. It is also important for researchers to work closely with key stakeholders, to facilitate evidence dissemination and implementation, to benefit caregivers and the patient.

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“…Previous research has demonstrated that approximately half of the children with cancer will seek emergency department (ED) care within the first year after diagnosis [ 13 ]. Through our explorations of the experience of children with cancer and their caregivers when medical emergencies arose in the community setting, we found that the key components for emergency preparedness included the ability to easily connect with the oncology team, having a packing checklist, and an informational card to show the ED staff [ 14 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study

Mueller¹,

Cochrane²,

Campbell³

et al. 2022

JMIR Cancer

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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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Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children With Cancer and Their Caregivers

Cited by 12 publications

References 24 publications

A novel qualitative approach for identifying effective communication for recruitment of minority women to a breast cancer prevention study

A novel qualitative approach for identifying effective communication for recruitment of minority women to a breast cancer prevention study

Understanding and Supporting Informal Cancer Caregivers

An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study

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