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
implementation; communication; children and young people; evaluation; context; Personal-health record; realist review
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.
Diffin J; Byrne B; Kerr H; Price J; Abbott A; McLaughlin D; O'Halloran P
Child: care, health and development
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/cch.12652" target="_blank" rel="noreferrer noopener">10.1111/cch.12652</a>
Decision-making And Future Planning For Children With Life-limiting Conditions: A Qualitative Systematic Review And Thematic Synthesis
Decision-making; Life-limiting Illness; Systematic Review
Background In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and professionals caring for children with life-limiting conditions are likely to face a number of difficult treatment decisions and develop plans for future care over the course of the child's life, but little is known about the process by which these decisions and plans are made. Methods The purpose of this review is to synthesize findings from qualitative research that has investigated decision-making and future planning for children with life-limiting conditions. A systematic search of six online databases was conducted and identified 887 papers for review; five papers were selected for inclusion, using predefined criteria. Reference list searching and contacting authors identified a further four papers for inclusion. Results Results sections of the papers were coded and synthesized into themes. Nineteen descriptive themes were identified, and these were further synthesized into four analytical themes. Analytical themes were 'decision factors', 'family factors', 'relational factors' and 'system factors'. Conclusions Review findings indicate that decision-making and future planning is difficult and needs to be individualized for each family. However, deficits in understanding the dynamic, relational and contextual aspects of decision-making remain and require further research.
Popejoy E; Pollock K; Almack K; Manning J; Johnston B
Child: Care, Health And Development
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a class="epub-doi" href="https://doi.org/10.1111/cch.12461">10.1111/cch.12461</a>