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

Child: Care, Health and Development
Janet DiffinPeter O'Halloran

Abstract

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. 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. Nine articles were included. Contextual factors...Continue Reading

References

Jun 6, 2002·Palliative Medicine·Michael A CornbleetUNKNOWN Joint Working Party of the Scottish Partnership Agency for Palliative and Cancer Care and National Council for Hospice and S
Aug 2, 2005·Journal of Health Services Research & Policy·Ray PawsonKieran Walshe
Dec 17, 2005·Journal of the American Medical Informatics Association : JAMIA·Paul C TangDaniel Z Sands
Mar 11, 2011·Archives of Disease in Childhood·R CrowleyM McKee
Jun 16, 2011·Journal of the American Medical Informatics Association : JAMIA·N ArcherS E Straus
Mar 14, 2012·Pediatrics·Lorna K FraserRoger C Parslow
Apr 21, 2012·Implementation Science : IS·Jo Rycroft-MaloneVal Wilson
Jan 31, 2013·BMC Medicine·Geoff WongRay Pawson
Sep 24, 2013·Health Informatics Journal·Terri L ByczkowskiMaria T Britto
Sep 28, 2013·Journal of General Internal Medicine·David A KatzMary Vaughan Sarrazin
Mar 7, 2014·The Journal of Ambulatory Care Management·Alexander G FiksRobert W Grundmeier
Jul 26, 2014·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Samantha A SartainJacqui Prieto
Mar 25, 2015·Archives of Disease in Childhood·Vic LarcherUNKNOWN Royal College of Paediatrics and Child Health
Feb 13, 2016·Journal of Applied Research in Intellectual Disabilities : JARID·Lyn McPhersonNicholas Lennox
Feb 26, 2016·Journal of Medical Internet Research·Hanna SchneiderAnn Blandford
May 4, 2016·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Imelda CoyneMaja Söderbäck
Jun 28, 2016·Journal of Innovation in Health Informatics·Quynh NguyenPierre-Paul Tellier

❮ Previous
Next ❯

Citations


❮ Previous
Next ❯

Methods Mentioned

BETA
cognitive behavioural therapy

Software Mentioned

Google Scholar
Critical Appraisal Skills Programme

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.