Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents

Linder, Lauri; Newman, Amy Rose; Stegenga, Kristin; Chiu, Yin-Shun; Wawrzynski, Sarah E; Kramer, Heidi; Weir, Charlene R.; Narus, Scott P.; Altizer, Roger

doi:10.1007/s00520-020-05495-w

Cited by 26 publications

(26 citation statements)

References 35 publications

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“…Communication of symptoms was a central aspect of each of the themes identified and included the potential to improve symptom-related discussions with the clinical team. These results advance the findings from the primary analysis (Linder et al, 2021) by providing additional information for how the Color Me Healthy app could be used to support parents as caregivers.…”

Section: Discussionsupporting

confidence: 77%

“…In the primary study, both parents and children endorsed the app as an interactive resource to support the child's autonomy in reporting symptoms (Linder et al, 2021). Parents also described having an increased awareness of their child's symptoms (Linder et al, 2021), subsequently inviting a deeper investigation regarding how the symptom assessment app may influence caregiving tasks. This secondary analysis used a thematic analysis approach to explore how Color Me Healthy could further support and inform parents as caregivers to their child with cancer.…”

Section: Study Purposementioning

confidence: 99%

“…Mobile health (mHealth) technologies provide creative solutions for pediatric patients to communicate their symptoms in child-centric ways. Several mHealth apps and tools have been developed to collect symptom-related information from children and adolescents with cancer, demonstrating feasibility and acceptability within this population (Baggott et al, 2015; Jibb et al, 2017; Linder et al, 2021; Macpherson et al, 2014; Ramsey et al, 2019). Although these symptom-focused apps have provided new opportunities for children and adolescents to communicate their experience with clinicians, less is known about how the use of these tools may influence the care provided by parents.…”

Section: Introductionmentioning

confidence: 99%

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Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer

Carney

Stegenga

Linder

2022

Journal of Pediatric Hematology/Oncology Nursing

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Background: Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. Methods: Nineteen parents (18 mothers; median 35 years old, range 26–48 years) of children (6–12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child’s trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. Results: Parents perceived the app to (1) elicit the child’s voice about his/her symptom experience; (2) provide a supportive and safe environment for the child to report symptoms; and (3) create an opportunity to facilitate communication between the child, parent, and clinical team. Parents expressed a willingness for their child to represent his/her experience with the app so that they could make informed decisions regarding symptom care. Discussion: Perceived benefits of the app extended to parents as they described developing further insight into their child’s cancer experience. The knowledge gained allowed parents the potential to enhance symptom communication and supportive care strategies. Future research should further evaluate how mHealth tools facilitate shared symptom management between children receiving treatment for cancer and their caregivers.

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Section: Discussionsupporting

confidence: 77%

Section: Study Purposementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer

Carney

Stegenga

Linder

2022

Journal of Pediatric Hematology/Oncology Nursing

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“…Apps can even help to significantly reduce cancer-related pain scores, especially when they offer instant messaging modules [ 17 ]. Besides pain, other symptoms such as changes in appetite, cough, dizziness, nausea, fatigue, difficulty sleeping, vomiting, and well-being are also represented in apps [ 18 - 20 ]. In general, the willingness to use these apps is high because of developmentally appropriate interfaces and features that ensure child-centered self-reporting [ 17 - 21 ].…”

Section: Introductionmentioning

confidence: 99%

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

Wiljén¹,

Chaplin²,

Crine³

et al. 2022

JMIR Pediatr Parent

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Background Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. Objective The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents’ views and health care professionals’ expectations and requirements for an mHealth tool. Methods User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. Results A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non–clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child’s voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. Conclusions The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

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“…Interventions for the home setting are warranted. Some efforts have already been made to address this using mHealth, such as the Pain Squad + smartphone app [22], the tablet-based Pain Buddy program [23], and the Color me Healthy app [24], which were all developed to improve pain management in children with cancer. The KLIK Pain Monitor app, named after the existing KLIK PROM (patientreported outcome measures) portal [25], was developed to reduce pain in children aged 0-18 years old at home during cancer treatment with the aim to (1) monitor pain in the home setting, enabling healthcare professionals (HCP's) to follow-up with families and offer help more quickly, and (2) provide families with psycho-educational information about pain.…”

Section: Introductionmentioning

confidence: 99%

Reducing pain in children with cancer at home: a feasibility study of the KLIK pain monitor app

Simon

Schepers

Grootenhuis

et al. 2021

Support Care Cancer

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Purpose This study assessed adherence to, feasibility of, and barriers and facilitators of implementation of an app developed to monitor and follow-up with pain in children with cancer at home. Methods Children (8–18 years) receiving cancer treatment (all diagnoses) or their parents (of children aged 0–7 years) used the KLIK Pain Monitor app for 3 weeks. Pain was assessed twice daily using an 11-point numeric rating scale (NRS-11) (ranging from 0 to 10). Healthcare professionals (HCP’s) from the hospital’s Pediatric Pain Service were instructed to follow-up with clinically significant pain scores (≥ 4) within 120 min (scores 4–6) or 30 min (scores 7–10). Adherence, feasibility, and implementation outcomes were assessed using questionnaires, app log data, and interviews. Results Twenty-seven children (M age = 7.3 years, 51.8% male) and six HCP’s participated. Sixty-three percent (N = 17) of families used the app on a daily basis during three weeks, and 18.5% (N = 5) reported pain scores twice daily during that time (family adherence). Twelve out of 27 children (44.4%) reported a clinically significant pain score at least once. In 70% (14/20) of clinically significant pain scores, HCP’s followed-up with families within the set timeframe (HCP adherence). Outcomes reveal feasibility for the majority of app functions (i.e., positive evaluation by ≥ 70% families/HCP’s), and non-feasible aspects could be resolved. Identified barriers and facilitators were used to improve future implementation efforts. Conclusion Use of the KLIK Pain Monitor app seems feasible. Future research will determine its effectiveness in reducing pain in children with cancer at home.

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Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents

Cited by 26 publications

References 35 publications

Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer

Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

Reducing pain in children with cancer at home: a feasibility study of the KLIK pain monitor app

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