A smartphone-based pain management app for adolescents with cancer: establishing system requirements and a pain care algorithm based on literature review, interviews, and consensus
Pain; adolescent; algorithms; Neoplasms; cellular phone
BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required. OBJECTIVE: To develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer. METHODS: A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app. RESULTS: The systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness. CONCLUSIONS: This study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.
2014
Jibb LA; Stevens BJ; Nathan PC; Seto Emily; Cafazzo JA; Stinson JN
Jmir Research Protocols
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2196/resprot.3041" target="_blank" rel="noreferrer">10.2196/resprot.3041</a>
Parent Experiences of Child Loss and End-Of-Life-Care in a Paediatric Intensive Care Unit: A Qualitative Study Protocol
Intensive Care Units; Terminal Care
BACKGROUND: Death of a child in the Paediatric Intensive Care Unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even in the case of children with terminal and progressive illnesses, death is a crisis that comes as a surprise to parents and is perceived as unexpected. In the final stage of a child's life, healthcare staff play a key role in sharing feelings and experiences with the family and in supporting them throughout the process in order to facilitate the grieving process. OBJECTIVE: To explore the experiences of parents whose children have died in a Paediatric Intensive Care Unit. METHODS: To address the study aims, a qualitative phenomenological study based on van Manen's proposal will be carried out. The study will be conducted in the paediatric intensive care unit of a tertiary care hospital. The study population will be parents or guardians over 18 years of age of children who have died in the unit at least 6 months prior to potential participation in the study. Purposive sampling will be used to ensure sample diversity in relation to experiential variables. Families will be initially contacted by letter sent alongside the standard letter of condolences from the hospital, and then recruited in a subsequent telephone call. The sample size will be determined by data saturation. In-depth interviews will be conducted individually or in pairs. Parents will decide when, how, and where to conduct the interviews, which will be transcribed verbatim and examined using thematic discourse analysis. RESULTS: This study was awarded a grant in December 2020 and was approved by the Medical and Health Research Ethics Committee on 21 December 2020. Data collection started in April 2021 and results are expected to be published in 2023. CONCLUSIONS: This project is intended to maintain, strengthen, and build on a particular line of research on end-of-life care with a focus on effective coping, spiritual wellbeing, and the adaptive grieving process. The results will contribute to establishing action guidelines that are both based on the discourses of parents who have experienced the death of a child and geared towards high quality end-of-life care through dignified death and adaptive grief management.
Alcón NS; González Gil MT
JMIR Research Protocols
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2196/43756" target="_blank" rel="noreferrer noopener">10.2196/43756</a>