Enhancing Resilience in Family Caregivers Using an mHealth App

Smeallie, Eleanor; Rosenthal, Lindsay; Johnson, A.; Roslin, Chloe; Hassett, Afton L.; Choi, Sung Won

doi:10.1055/a-1967-8721

Cited by 5 publications

(4 citation statements)

References 51 publications

(58 reference statements)

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“…The importance of caregiver emotional well‐being in the optimization of patient health applies more broadly to cancer care 33 . Emotional and resilience‐based interventions may enhance caregiver well‐being, which reciprocally benefits patients’ level of care and health 33,34 . Fever neutropenia episodes distress caregivers; however, these emotional difficulties are not unique to FN episodes apply to other caregivers of patients with cancer 33 …”

Section: Discussionmentioning

confidence: 99%

“Better at home”: Mixed methods report of intricacies in pediatric febrile neutropenia management

Smeallie,

Choi,

Mody

et al. 2024

Cancer Medicine

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IntroductionMany febrile neutropenia (FN) episodes are low risk (LR) for severe outcomes and can safely receive less aggressive management and early hospital discharge. Validated risk tools are recommended by the Children's Oncology Group to identify LR FN episodes. However, the complex dynamics of early hospital discharge and burdens faced by caregivers associated with the FN episode have been inadequately described.MethodsAn adapted quality‐of‐life (QoL) survey instrument was administered by a convergent mixed methods design; qualitative and quantitative data from two sources, the medical record and the mixed methods survey instrument, were independently analyzed prior to linkage and integration. Code book was informed by conceptual framework; open coding was used. Mixed methods analysis used joint display of results to determine meta‐inferences.ResultsTwenty‐eight patient–caregiver dyads participated with a response rate of 87%. Of the 27 FN episodes, 51.8% (14/27) were LR and 40.7% (11/27) had an early hospital discharge. The LR and early hospital discharge groups had higher mean QoL scores comparatively. Meta‐inferences are reciprocal influencers and expand the complex situation; FN negatively affects the entire family, and the benefits of hospital management were outweighed by risks and worsened symptoms, so an individualized approach to management and care at home was preferred.ConclusionEarly discharge of LR FN episodes positively impacts QoL, yet risk‐stratified management for FN is intricately complex. Optimal FN management should prioritize the patient's overall health; shared decision‐making is recommended and can improve care delivery. These results should be confirmed in a larger, more heterogeneous population.

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Section: Discussionmentioning

confidence: 99%

“Better at home”: Mixed methods report of intricacies in pediatric febrile neutropenia management

Smeallie,

Choi,

Mody

et al. 2024

Cancer Medicine

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“…Future research on the prototype described in this study will both qualitatively and quantitatively describe the results of testing. 35 It is likely that end users will identify new or different needs upon extended use of the prototype. Last, achieving equal participation among group members in codesign is challenging, and in the present study we did not measure nor document the equality of participation.…”

Section: Discussionmentioning

confidence: 99%

An mHealth Design to Promote Medication Safety in Children with Medical Complexity

Jolliff,

Coller,

Kearney

et al. 2023

Appl Clin Inform

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Background. Children with medical complexity (CMC) are uniquely vulnerable to medication errors and preventable adverse drug events because of their extreme polypharmacy, medical fragility, and reliance on complicated medication schedules and routes managed by under-supported family caregivers. There is an opportunity to improve CMC outcomes by designing health information technologies that support medication administration accuracy, timeliness, and communication within CMC caregiving networks. Objectives: The present study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a co-design process to identify: 1) medication safety challenges experienced by CMC caregivers and, 2) design requirements for a mobile health application to improve medication safety for CMC in the home. Methods: Study staff recruited family caregivers, secondary caregivers, and clinicians from a children’s hospital-based pediatric complex care program to participate in virtual co-design sessions. During sessions, the facilitator guided co-designers in generating and converging upon medication safety challenges and design requirements. Between sessions, the research team reviewed notes from the session to identify design specifications and modify the prototype. After design sessions concluded, each session recording was reviewed to confirm that all designer comments had been captured. Results: A total of N=16 co-designers participated. Analyses yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines. Supporting quotations from co-designers and prototype features associated with each design requirement are presented. Conclusions: This study generated design requirements for a tool that may improve medication safety by creating distributed situation awareness within the caregiving network. The next steps are to pilot test tools that integrate these design requirements for usability and feasibility, and to conduct a randomized control trial to determine if use of these tools reduces medication errors.

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“…The interview guide was informed by the literature [13] as well as our previously published data, as seen in Multimedia Appendix 2 [14]. Interviews were transcribed via a transcription service (eg, BabbleType LLC).…”

Section: Study Design Recruitment and Consentmentioning

confidence: 99%

Mobile Technology to Monitor and Support Health and Well-Being: Qualitative Study of Perspectives and Design Suggestions From Patients Undergoing Hematopoietic Cell Transplantation

Caparso,

Ozkan,

Kluge

et al. 2023

JMIR Form Res

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Background In the United States, hematopoietic stem cell transplant (HCT) surpasses 22,000 procedures annually. Due to the demanding and time-intensive process of an HCT, patients and family care partners face unique challenges involving their health and well-being. Positive psychology interventions (PPIs) may offer potential solutions to help boost health and well-being. Objective This study aimed to explore and understand patients’ experiences and perceptions about the use of the Roadmap 2.0 app, specifically its PPI features, during the acute phase of HCT. Methods From an ongoing randomized controlled trial, HCT patients (n=17) were recruited to participate in semistructured qualitative interviews between October 2022 and January 2023 within a large academic medical center in the Midwestern states. Using a qualitative descriptive approach, interviews were conducted in person or via Zoom. The data were analyzed through constant comparative analysis. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were followed. Results The majority of the participants reported Roadmap 2.0 as easy to use and enjoyed the ability to track their health data (eg, steps, mood, sleep; 9/17). Regarding the use of PPIs during the acute phase of treatment, 88% of the participants reported interest in participating in PPIs, specifically the Pleasant Activity Scheduling (11/17) followed by Gratitude Journaling (7/17) activities. Additionally, participants provided recommendations on adapting Roadmap 2.0. The major recommendations were (1) “Working Together: Need for Dyadic Involvement,” (2) “Connectivity with Other Patients,” and (3) “Gap in Nutritional Support.” Participants (10/17) expressed the importance of caregiver involvement in activities beyond treatment-related management for maintaining healthy patient-caregiver dyadic relationships. They also expressed their desire for connectivity with other patients undergoing HCT, primarily for comparing experiences and discussing topics such as symptom management (8/17). Lastly, participants identified a gap in nutritional support during the HCT process and expressed interest in an intervention that could promote healthy eating through education and notification reminders (9/17). Conclusions Participants openly expressed their eagerness to participate in research studies that foster connection and positive relationships with their caregivers as well as with other HCT patients. They emphasized the significance of having access to nutritional support or guidance and highlighted the potential benefits of using mobile technology to enhance these collective efforts. Trial Registration ClinicalTrials.gov NCT04094844; https://clinicaltrials.gov/study/NCT04094844 International Registered Report Identifier (IRRID) RR2-10.2196/19288

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Enhancing Resilience in Family Caregivers Using an mHealth App

Cited by 5 publications

References 51 publications

“Better at home”: Mixed methods report of intricacies in pediatric febrile neutropenia management

“Better at home”: Mixed methods report of intricacies in pediatric febrile neutropenia management

An mHealth Design to Promote Medication Safety in Children with Medical Complexity

Mobile Technology to Monitor and Support Health and Well-Being: Qualitative Study of Perspectives and Design Suggestions From Patients Undergoing Hematopoietic Cell Transplantation

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