Online information as support to the families of children and adolescents with chronic disease

Mazza, Verônica de Azevedo; Lima, Vanessa Ferreira de; Carvalho, Ana Karoline da Silva; Weissheimer, Gisele; Soares, Larissa Gramazio

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Sumário

Integrative Review • Rev. Gaúcha Enferm. (Online) 38 (1) • 2017 • https://doi.org/10.1590/1983-1447.2017.01.63475 copy

Online information as support to the families of children and adolescents with chronic disease

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objective

To describe the use of online information as support to families of children and adolescents with chronic disease.

Methods

This is an integrative review conducted in August 2015, with an online search in the following databases: PubMed, Biblioteca Virtual em Saúde, Cumulative Index to Nursing & Allied Health Literature, and Science Direct.

Results

Twelve studies were selected from the 293 studies found in the databases. After analysis, the following two categories emerged: Potentialities of the use of online information by families of children and adolescents with chronic disease, and Weaknesses of the use of online information by families of children and adolescents with chronic disease.

Conclusions

The internet offers a wide range of information that helps families manage the care of children and adolescents with chronic diseases, but it also has characteristics that need to be analysed.

Consumer health information; Internet; Chronic disease; Child; Adolescent

Reference	Year/Place of study/Journal/Database	Methodological approach/Level of evidence	Objective
Stern et al.⁽¹³⁾	2011/United States of America (USA) Journal of Family Issues/ CINAHL	Quantitative/Level VI	Explore how the parental status, gender, and interaction between these two variables influence a range of aspects for the search for online health information.
Swallow et al.⁽¹⁴⁾	2014/United Kingdom/JMIR Research Protocols: JMIR ResProtoc/PubMed	Quantitative/Level II	Evaluate the feasibility of a randomised clinical trial of Online Parent Information and Support in terms of recruitment and retention of mothers and fathers, data collection procedures and psychometric performance of the study measures on the target population, and investigate the trends of change of results measures in a small-scale randomised clinical trial in parents of children with chronic kidney disease stages 3-5.
Armstrong et al.⁽¹⁵⁾	2015/USA/JAMA Dermatology/PubMed	Quantitative/Level II	Compare the effectiveness of access to an online model for tracking dermatologic care in children and adults with atopic dermatitis with personal visits at the consultation room.
Stinson et al.⁽¹⁶⁾	2014/Canada/Pain Research & Management/PubMed	Qualitative/Level VI	Evaluate the healthcare needs of adolescents through an online self-management programme for chronic pain in adolescents called iCanCopewithPain™.
Fore et al. ⁽¹⁷⁾	2013/ EUA/ JMIR Research Protocols: JMIR ResProtoc/ PubMed	Qualitative/Level VI	Describe how the project Metas Dirigidas (“GDD”) was employed to understand the context and objectives of potential participants in a system that conceptualises a health-learning programme in a network of collaborative care for chronic diseases (C3N), specifically for paediatric inflammatory bowel disease.
Byczkowski et al.⁽¹⁸⁾	2014/ EUA/ Health Informatics Journal/ PubMed	Quantitative/Level VI	Understand the perception of parents of children with chronic diseases (diabetes, juvenile idiopathic arthritis and cystic fibrosis) on the usefulness and value of information available on the website intended for patients with chronic illness.
Swallow et al.⁽¹⁹⁾	2012/United Kingdom/Journal of Advanced Nursing/PubMed	Qualitative/Level VII	Present the report of a protocol for studying the creation and evaluation of an information pack for parents and online support for the home care of children with chronic kidney disease stages 3-5.
Nordqvist et al. ⁽²⁰⁾	2009/Sweden/Journal of Medical Internet Research/PubMed	Qualitative/Level VI	Explore the attitudes of paediatric health professionals in relation to the introduction of a local web portal for young patients with type 1 diabetes that offers interactive educational devices, social networking tools, self-service information, and locally produced treatment.
Timpka et al.⁽²¹⁾	2008/Sweden/BMC Medical Informatics and Decision Making/PubMed	Qualitative/Level VI	To address the potential for developing web 2.0 services for young people with a chronic disease.
Swallow et al. ⁽²²⁾	2014/United Kingdom/BMC Nephrology/VHL	Qualitative/Level VI	Explore the views of parents, patients, and professionals about the content of the information proposed by the web-application Online Parent Information and Support (OPIS) for the care of children with chronic kidney disease.
Lam et al. ⁽²³⁾	2013/USA/Patient education and counseling/Science Direct	Quantitative/Level VI	Assess the quality, readability, and social impact of websites for adolescents diagnosed with osteosarcoma.
Cerminaraet al.⁽²⁴⁾	2014/Italy/Epilepsy & Behavior/Science Direct	Quantitative/Level VI	Assess and analyse the quality of online information about children with epilepsy and its treatment in English-speaking countries to identify shortcomings and recommend changes in online health resources for children’s epilepsy.

Universidade Federal do Rio Grande do Sul. Escola de Enfermagem Rua São Manoel, 963 -Campus da Saúde , 90.620-110 - Porto Alegre - RS - Brasil, Fone: (55 51) 3308-5242 / Fax: (55 51) 3308-5436 - Porto Alegre - RS - Brazil
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[1] Corresponding author: Verônica de Azevedo Mazza. E-mail: mazzas@ufpr.br