The internet as a source of support for youth with chronic conditions: A qualitative study

S Ahola Kohut; C LeBlanc; K O'Leary; A C McPherson; E McCarthy; C Nguyen; J Stinson

doi:10.1111/cch.12535

The internet as a source of support for youth with chronic conditions: A qualitative study

Child Care Health Dev. 2018 Mar;44(2):212-220. doi: 10.1111/cch.12535. Epub 2017 Oct 29.

Authors

S Ahola Kohut^{1

2}, C LeBlanc³, K O'Leary⁴, A C McPherson^{5

6}, E McCarthy⁷, C Nguyen⁷, J Stinson^{7

8}

Affiliations

¹ Medical Psychiatry Alliance, Hospital for Sick Children, Toronto, ON, Canada.
² Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
³ Child Life Services, IWK Health Centre, Halifax, NS, Canada.
⁴ Child Life/Creative Arts Therapy, Hospital for Sick Children, Toronto, ON, Canada.
⁵ Bloorview Research Institute, Toronto, ON, Canada.
⁶ Dalla Lana School of Public Health & Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁷ Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, ON, Canada.
⁸ Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.

PMID: 29082537
DOI: 10.1111/cch.12535

Abstract

Background: Adolescents living with chronic conditions often portray themselves as "healthy" online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program.

Methods: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12-18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada.

Results: Thirty-three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease-related information and a community of other adolescents to provide social support.

Conclusions: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization.

Keywords: adolescence; chronic (health) condition; health information; qualitative research methods; social support.

Publication types

Multicenter Study
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Canada
Child
Chronic Disease / psychology*
Chronic Disease / rehabilitation
Consumer Health Informatics / methods
Female
Hospitalization / statistics & numerical data
Humans
Internet*
Interviews as Topic
Male
Needs Assessment
Qualitative Research
Social Networking
Social Support*