Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review

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Abstract

Background

Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions.

Objective

This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research.

Methods

We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ≤18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies.

Results

We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals.

Conclusions

The strengths of the conclusions are limited by the studies’ methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals.

Trial Registration

PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky

Related collections

Most cited references 30

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Convergent and sequential synthesis designs: implications for conducting and reporting systematic reviews of qualitative and quantitative evidence

Quan Hong, Pierre Pluye, Mathieu Bujold … (2017)

Background Systematic reviews of qualitative and quantitative evidence can provide a rich understanding of complex phenomena. This type of review is increasingly popular, has been used to provide a landscape of existing knowledge, and addresses the types of questions not usually covered in reviews relying solely on either quantitative or qualitative evidence. Although several typologies of synthesis designs have been developed, none have been tested on a large sample of reviews. The aim of this review of reviews was to identify and develop a typology of synthesis designs and methods that have been used and to propose strategies for synthesizing qualitative and quantitative evidence. Methods A review of systematic reviews combining qualitative and quantitative evidence was performed. Six databases were searched from inception to December 2014. Reviews were included if they were systematic reviews combining qualitative and quantitative evidence. The included reviews were analyzed according to three concepts of synthesis processes: (a) synthesis methods, (b) sequence of data synthesis, and (c) integration of data and synthesis results. Results A total of 459 reviews were included. The analysis of this literature highlighted a lack of transparency in reporting how evidence was synthesized and a lack of consistency in the terminology used. Two main types of synthesis designs were identified: convergent and sequential synthesis designs. Within the convergent synthesis design, three subtypes were found: (a) data-based convergent synthesis design, where qualitative and quantitative evidence is analyzed together using the same synthesis method, (b) results-based convergent synthesis design, where qualitative and quantitative evidence is analyzed separately using different synthesis methods and results of both syntheses are integrated during a final synthesis, and (c) parallel-results convergent synthesis design consisting of independent syntheses of qualitative and quantitative evidence and an interpretation of the results in the discussion. Conclusions Performing systematic reviews of qualitative and quantitative evidence is challenging because of the multiple synthesis options. The findings provide guidance on how to combine qualitative and quantitative evidence. Also, recommendations are made to improve the conducting and reporting of this type of review.

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Pediatric palliative care patients: a prospective multicenter cohort study.

Chris Feudtner, William Hays, Harold Siden … (2011)

To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

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A systematic review of eHealth interventions to improve health literacy

R. Jacobs, J. Q. Lou, R. Ownby … (2016)

Implementation of eHealth is now considered an effective way to address concerns about the health status of health care consumers. The purpose of this study was to review empirically based eHealth intervention strategies designed to improve health literacy among consumers in a variety of settings. A computerized search of 16 databases of abstracts (e.g. Biomedical Reference Collection, Cochrane Central Register of Controlled Trials, Computers & Applied Sciences Complete, Health Technology Assessments, MEDLINE) were explored in a systematic fashion to assess the presence of eHealth applications targeting health literacy. Compared to control interventions, the interventions using technology reported significant outcomes or showed promise for future positive outcomes regarding health literacy in a variety of settings, for different diseases, and with diverse samples. This review has indicated that it is feasible to deliver eHealth interventions specifically designed to improve health literacy skills for people with different health conditions, risk factors, and socioeconomic backgrounds.

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Author and article information

Contributors

Heidi Holmen:

ORCID: https://orcid.org/0000-0003-1314-7813

Oslo Metropolitan UniversityPostboks 4 St. Olavs plassOslo, N-0130Norway47 67236241heidiho@oslomet.no

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: February 2020

Publication date (Electronic): 28 February 2020

Volume: 22

Issue: 2

Electronic Location Identifier: e16248

Affiliations

[1 ] Oslo Metropolitan University Oslo Norway

Author notes

Corresponding Author: Heidi Holmen heidiho@ 123456oslomet.no

Author information

Heidi Holmen https://orcid.org/0000-0003-1314-7813

Kirsti Riiser https://orcid.org/0000-0002-0801-1121

Anette Winger https://orcid.org/0000-0002-9751-9698

Article

Publisher ID: v22i2e16248

DOI: 10.2196/16248

PMC ID: 7070344

PubMed ID: 32130127

SO-VID: 6c88e266-a773-4e2f-9071-6f6499b5977b

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 13 September 2019

Date revision requested : 3 November 2019

Date revision received : 5 November 2019

Date accepted : 14 December 2019

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