The use of patient-held records by children and young people managing a health condition: a realist review of the literature

Research output: Contribution to conferencePosterpeer-review

Abstract

Introduction: Patient-held records (PHRs) are proposed to improve communication and coordination of care amongst young people with life-limiting conditions their families and health professionals. However implementation of PHRs has proved difficult due to technical organisational and professional barriers.
Aims: To identify the factors which help or hinder the use of PHRs by young people with life-limiting conditions.
Method: Systematic realist review. Literature was sourced from six databases: Medline Embase CINAHL PsychInfo The Cochrane Library Science Direct (from 1946 to December Week 1 2016). 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 each reporting on a different PHR. Young people (and/or parents/carers) with conditions of higher severity requiring ongoing care more medications and frequent appointments with multiple providers were more engaged with the PHR. Service providers need sufficient knowledge about the PHR and organisations need to ensure staff can see the benefits of using the PHR for implementation success. Mechanisms triggered by the PHR included improved self-advocacy and young people becoming empowered to self-manage their condition.
Conclusion: Clear definitions of which young people would benefit from using a PHR must be established in order to direct resources accordingly. These definitions will help inform which organisations and service providers would see the most reward from PHR implementation.
Original languageEnglish
Publication statusPublished - 2018
EventThe Annual Marie Curie Palliative Care Research Conference: "From radical to real: Implementing new models of palliative care" - Royal Society of Medicine, London, United Kingdom
Duration: 17 Oct 201817 Oct 2018

Conference

ConferenceThe Annual Marie Curie Palliative Care Research Conference: "From radical to real: Implementing new models of palliative care"
CountryUnited Kingdom
CityLondon
Period17/10/201817/10/2018

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