The usefulness and acceptability of a personal-health record to children and young people living with a complex health condition: a realist review of the literature.

Janet Diffin, Bronagh Byrne, Helen Kerr, Jayne Price, Aine Abbott, Dorry McLaughlin, Peter O'Halloran

Research output: Contribution to journalArticlepeer-review

164 Downloads (Pure)

Abstract

Background
There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life‐limiting or life‐threatening conditions are surviving into adulthood. Communication between CYP, their family and health professionals can be challenging. The use of a personal‐health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational and professional barriers. The aim of this realist review is to identify the factors which help or hinder the use of PHRs with CYP living with a complex health condition.

Methods
Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool.

Results
Nine articles were included. Contextual factors which helped implementation included the CYP having a high perception of need for a PHR, and a high level of desire for self‐management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of healthcare condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their healthcare. Outcomes for CYP included improved self‐advocacy and communication.

Conclusion
Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.
Original languageEnglish
Pages (from-to)13-32
Number of pages20
JournalChild: Care, Health and Development
Volume45
Early online date28 Feb 2019
DOIs
Publication statusPublished - May 2019

Fingerprint

Dive into the research topics of 'The usefulness and acceptability of a personal-health record to children and young people living with a complex health condition: a realist review of the literature.'. Together they form a unique fingerprint.

Cite this