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.
SwallowV. Special issue on children, young people, and families living with long-term conditions. J Pediatr Nurs2015; 30(1): 1–3. DOI: 10.1016/j.pedn.2014.10.015.
2.
MokkinkLBVan Der LeeJHGrootenhuisMA, et al. Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands. Eur. J. Pediatr2008; 167: 1441–1147.
3.
ModiACPaiALHommelKA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics2012; 129: e473–e485.
4.
LorigKRHolmanH. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med2003; 26: –7.
5.
SawyerSMAroniRA. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?Med J Aust2005; 183: 405–409. DOI: 10.5694/j.1326- 5377.2005.tb07103.x.
6.
O’HaraLKHolmbeckGN. Executive functions and parenting behaviors in association with medical adherence and autonomy among youth with spina bifida. J Pediatr Psychol2013; 38: 675–687.
7.
ArnettJJ. Presidential address: the emergence of emerging adulthood. Emerg Adulthood2014; 2: 155–162.
8.
PaiALMcGradyM. Systematic review and meta-analysis of psychological interventions to promote treatment adherence in children, adolescents, and young adults with chronic illness. J Pediatr Psychol2014; 39: 918–931.
9.
GorterJWRoebroeckM. Transition to adulthood: enhancing health and quality of life for emerging adults with neurological and developmental conditions. In: RonenGMRosenbaumPL (eds) Life quality outcomes in children and young people with neurological and developmental conditions: concepts, evidence and practice. London, UK: Mac Keith Press; 2013:306–317.
10.
HanghøjSBoisenKA. Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review. J Adolesc Health2014; 54: 121–138.
11.
GreyMRechenbergK. Self management of illness in teens. In: GradyPAHinshawAS (eds) Using nursing research to shape health policy. New York, NY: Springer Publishing Company, LLC; 2017: 111–126.
12.
SwendemanDIngramBLRotheram-BorusMJ. Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care2009; 21: 1321–1334.
13.
LerchMFThraneSE. Adolescents with chronic illness and the transition to self-management: a systematic review. J Adolesc2019; 72: 152–161. /j. adolescence.2019.02.010
14.
JavalkarKJohnsonMKshirsagarAV, et al. Ecological factors predict transition readiness/self-management in youth with chronic conditions. J Adolesc Health2016; 58: 40–46.
15.
ApplebaumMALawsonEFvon SchevenE. Perception of transition readiness and preferences for use of technology in transition programs: teens’ ideas for the future. Int J Adolesc Med2013; 25: 119–125.
16.
RadovicAMcCartyCAKatzmanK, et al.Adolescents’ perspectives on using technology for health: qualitative study. JMIR Pediatr Parent2018; 1: e2.
17.
BadawySMThompsonAAKuhnsLM. Medication adherence and technology-based interventions for adolescents with chronic health conditions: a few key considerations. JMIR MHealth UHealth2017; 5(12): e202. DOI: 10.2196/mhealth.8310.
18.
WallersteinNDuranB. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health2010; 100 Suppl 1(Suppl 1):S40−S46. DOI:10.2105/AJPH.2009.184036
19.
SawyerSMAzzopardiPSWickremarathneD, et al.The age of adolescence. Lancet Child Adolesc Health2018; 2: 223–228.
20.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol2006; 3: 77–101.
BuchbinderE. Beyond checking: experience of the validation interview. Qual Soc Work2011; 10: 106–122.
24.
McDonaghJEBatemanB. ‘Nothing about us without us’: considerations for research involving young people. Arch Dis Child Educ Pract Ed2012; 97: 55–60.
25.
OdgersHLTongALopez-VargasP, et al. Research priority setting in childhood chronic disease: a systematic review. Arch Dis Child2018; 103: 942–951.
26.
GreyMKnaflKMcCorkleR. A framework for the study of self-and family management of chronic conditions. Nurs Outlook2006; 54: 278–286.
27.
AudulvÅNorberghKGAsplundK, et al.An ongoing process of inner negotiation–a grounded theory study of self-management among people living with chronic illness. J Nurs Healthc Chronic Illn2009; 1: 283–293.
28.
De las CuevasC. Towards a clarification of terminology in medicine taking behavior: compliance, adherence and concordance are related although different terms with different uses. Curr Clin Pharmacol2011; 6: 74–77.
29.
Abbasgholizadeh RahimiSMenearMRobitailleH, et al. Are mobile health applications useful for supporting shared decision making in diagnostic and treatment decisions?Glob Health Action2017;10: 1332259.
30.
DavisSRoudsariARaworthR, et al. Shared decision-making using personal health record technology: a scoping review at the crossroads. J Am Med Inform Assn2017; 24: 857–866.
31.
ConnVSRupparTMChanKC, et al. Packaging interventions to increase medication adherence: systematic review and meta-analysis. Curr Med Res Opin2015; 31: 145–160.
32.
VervloetMLinnAJvan WeertJC, et al. The effectiveness of interventions using electronic reminders to improve adherence to chronic medication: a systematic review of the literature. J Am Med Inform Assoc2012; 19: 696–704.
33.
SchwartzDDAxelradMEHilliardME. Interventions to promote adherence: innovations in behavior change strategies. In: SchwartzDDAxelradME (eds) Healthcare Partnerships for Pediatric Adherence. New York City: Springer, 2015, pp.51–62. DOI: 10.1007/978-3-319-13668-4.
34.
Majeed-ArissRBaildamECampbellM, et al. Apps and adolescents: a systematic review of adolescents’ use of mobile phone and tablet apps that support personal management of their chronic or long-term physical conditions. J Med Internet Res2015; 17: e287.
35.
FarzandipourMNabovatiESharifR, et al. Patient self-management of asthma using mobile health applications: a systematic review of the functionalities and effects. Appl Clin Infom2017;8: 1068.
36.
SawickiGSHellerKSDemarsN, et al.Motivating adherence among adolescents with cystic fibrosis: youth and parent perspectives. Pediatr Pulmonol2015; 50: 127–136.
37.
HeldenbrandSMartinBCGubbinsPO,et al.Assessment of medication adherence app features, functionality, and health literacy level and the creation of a searchable Web-based adherence app resource for health care professionals and patients. J Am Pharm Assoc2016; 56: 293–302.
38.
NordJHKoohangAPaliszkiewiczJ. The internet of things: review and theoretical framework. Expert Syst Appl2019; 133: 97–108.
39.
VaughanCWagnerGMiyashiroL, et al. The role of the home environment and routinization in ART adherence. J Int Assoc Physicians AIDS Care (Chic) 2011; 10: 176–182.
40.
LansingAHBergCA. Topical review: adolescent self-regulation as a foundation for chronic illness self-management. J Pediatr Psychol2014; 39: 1091–1096.
41.
DoumaMScholtenLMaurice-StamH, et al.Online cognitive-behavioral based group interventions for adolescents with chronic illness and parents: study protocol of two multicenter randomized controlled trials. BMC Pediatr2018; 18: 1.
42.
Finlay-JonesABoyesMPerryY,et al.Online self-compassion training to improve the wellbeing of youth with chronic medical conditions: protocol for a randomised control trial. BMC Public Health2020; 20: 1.
43.
StollonNZhongYFerrisM, et al.Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease. World J Gastroentero2017; 23: 3349.
44.
RyanJLArnettADPaiAL, et al.An examination of the allocation of treatment responsibility scale in adolescents with epilepsy. Epilepsy Behav2014; 41: –5.
45.
Nahum-ShaniISmithSNSpringBJ, et al. Just-in-time adaptive interventions (JITAIs) in mobile health: key components and design principles for ongoing health behavior support. Ann Behav Med2018; 52: 446–462.
46.
LindsaySKingsnorthSHamdaniY. Barriers and facilitators of chronic illness self-management among adolescents: a review and future directions. J Nurs Healthc Chronic Illn2011; 3: 186–208.
47.
WongC. A.MadanayF.OzerE. M., et al. Digital health technology to enhance adolescent and young adult clinical preventive services: affordances and challenges. J Adolescent Health2020; 67: S24–S33.
48.
YeeKCBettiolSMacintyreK, et al. How can information and communication technology improve healthcare inequalities and healthcare inequity? The concept of context driven care. St Heal T2018;247: 591–595.
49.
ValdezRSGibbonsMCSiegelER, et al. Designing consumer health IT to enhance usability among different racial and ethnic groups within the United States. Health Technol (Berl)2012; 2: 225–233.
50.
BraunVClarkeV. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qual Res Sport Exerc Health2021; 13: 201–216.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
