Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness

2021 ◽  
pp. 174239532110674
Author(s):  
Caitlin S. Sayegh ◽  
Ellen Iverson ◽  
Clarissa Newman ◽  
Diane Tanaka ◽  
Ellen F. Olshansky ◽  
...  
Keyword(s):  
Young Adults ◽  
Chronic Illness ◽  
Los Angeles ◽  
Chronic Illnesses ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Management Skills ◽  
Structured Interviews ◽  
Mhealth Intervention ◽  
The Right

Objectives Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. Methods Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. Results Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. Discussion The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

10.2196/13579 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e13579 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

The adaptation of everyday practices in the adoption of chronic illness

2017 ◽  
Vol 23 (3) ◽  
pp. 325-343 ◽  
Author(s):  
Kadi Lubi
Keyword(s):  
Chronic Illness ◽  
Information Seeking ◽  
Social Practice ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Social Practice Theory ◽  
Related Information ◽  
Practice Elements ◽  
Research Findings

This article uses social practice theory to examine the role of information-seeking in the maintenance of existing lifestyle and illness-related adjustments in the context of chronic illnesses. The research findings are derived from a thematic analysis of 16 semi-structured in-depth interviews with Estonian Parkinson’s disease patients. The coding scheme bases on the four practice elements outlined by Schatzki (practical understandings, rules, teleological structures and general understandings) and other categories related to chronic illness self-management skills, bodily movements, daily routines and information-seeking practices. The findings reveal that people with chronic illness value maintaining their existing lifestyles as long as possible and the willingness to seek out illness-related information is related to the severity and duration of the disease. These findings suggest that effective illness-related communication that supports self-management should provide patients with possibilities to adjust and switch between practices in a time and a pace that is natural and acceptable to them.

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review (Preprint)

2019 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

BACKGROUND More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs.

Evaluation of an Internet Diabetes Self-Management Training Program for Adolescents and Young Adults

2007 ◽  
Vol 9 (1) ◽  
pp. 60-67 ◽  
Author(s):  
Ben S. Gerber ◽  
Marla C. Solomon ◽  
Tracie L. Shaffer ◽  
Michael T. Quinn ◽  
Rebecca B. Lipton
Keyword(s):  
Young Adults ◽  
Training Program ◽  
Management Training ◽  
Adolescents And Young Adults ◽  
Self Management

Using a Heuristic App to Improve Symptom Self-Management in Adolescents and Young Adults with Cancer

2019 ◽  
Vol 8 (2) ◽  
pp. 131-141 ◽  
Author(s):  
Jeanne M. Erickson ◽  
Suzanne Ameringer ◽  
Lauri Linder ◽  
Catherine Fiona Macpherson ◽  
R.K. Elswick ◽  
...  
Keyword(s):  
Young Adults ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Improve Symptom

scholarly journals Parent-child collaboration in health care decision making: perspectives of young people with chronic illness

2021 ◽  
Author(s):  
Elana Jackson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Chronic Illness ◽  
Young People ◽  
Organ Transplant ◽  
Chronic Illnesses ◽  
Structured Interviews ◽  
Health Care Decision ◽  
Role Of Parents ◽  
Care Decision

This study explores the perspectives of young people with chronic illness on their participation in health care discussions and decision making, with a specific focus on the role of parents in facilitating participation. Semi-structured interviews were conducted with 26 participants between the ages of 5 and 18. Participants were recruited from inpatient units at a pediatric hospital. A range of chronic illnesses were represented among members of the sample, including kidney failure, Crohn’s disease, organ transplant, and sickle cell anemia. Following data collection, a focused analysis was conducted of participants’ statements related to parent involvement in the health care decision making process. Salient themes that emerged from analysis of the data reveal a complex and bidirectional process in which young people and parents negotiate children’s participation in making decisions related to their health care. Based on the findings, a collaborative-contextual model of decision making is proposed.

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