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

• Published in: Child : care, health & development Vol. 45; no. 3; pp. 313 - 332
• Main Authors: Diffin, Janet, Byrne, Bronagh, Kerr, Helen, Price, Jayne, Abbott, Aine, McLaughlin, Dorry, O'Halloran, Peter
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.05.2019; John Wiley and Sons Inc
• Subjects: Adolescent; Child; Children; children and young people; Chronic Disease - psychology; Chronic Disease - therapy; Clinical outcomes; Communication; context; evaluation; Extraction; Health Conditions; Health education; Health information; Health Knowledge, Attitudes, Practice; Health needs; Health promotion; Health Records, Personal - psychology; Health Services Research - methods; Health status; Humans; Implementation; Literature reviews; Medical personnel; Patient Acceptance of Health Care; Patient Advocacy - psychology; People with disabilities; Personal health; personal health record; Professional-Patient Relations; realist review; Review; Self Care; Self-advocacy; Usefulness; Young Adult; Young Adults; Youth; evaluation; realist review; children and young people; implementation; personal health record; context; communication
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/cch.12652

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 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 health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. 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.