Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial

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Abstract

Background

Parents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child’s illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation.

Objective

The objectives of our study were to (1) identify the outcome measures that are most likely to capture the potential benefit, (2) evaluate the potential effectiveness and effect size, and (3) evaluate recruitment, reach, the dose received, and context.

Methods

We conducted a feasibility study with a two-armed, wait-list randomized controlled trial (RCT). Prior to baseline, parents (n=146) were randomly allocated to group 1 or group 2. After completing the baseline questionnaire, parents in group 1 were given access to e-Powered Parents, while those in group 2 received usual care. At the 6-month follow-up (T1), all parents received a questionnaire and parents in group 2 were given access to e-Powered Parents as well. After 1.5 years, through an extra measurement (T2), we evaluated the effect of long-term exposure. Outcomes were the child’s quality of life (Child Vulnerability Scale), parental stress (Pediatric Inventory for Parents) and fatigue (Multidimensional Fatigue Inventory), self-efficacy in communication with health care professionals (Perceived Efficacy in Patient-Physician Interactions, PEPPI-5), and parental perceptions of family management (Family Management Measure). Floor and ceiling effects and percentage of parents showing no change in scores were calculated. We used linear mixed models to evaluate the potential effectiveness and effect sizes using the intention-to-treat and per-protocol analyses. In the process evaluation, we evaluated recruitment, reach, the dose received, and context using a questionnaire sent to the parents, log-in data, and a focus group interview with health care professionals.

Results

At T1 (n=86) and T2 (n=51), no significant effects were found on any of the five outcomes. The PEPPI-5 showed ceiling effects and high percentages of parents showing no change between the measurement times. The information and interactive part of the intervention were used by 84% (57/68) of the parents in group 1 and 49% (32/65) of the parents in group 2. The information pages were visited most often. Overall, 64% (85/133) of the parents logged in to the training platform and 31% (26/85) actually used the training modules.

Conclusions

We did not observe any significant effect on any of the outcomes. This could possibly be explained by the minimal use of the intervention and by parents’ heterogeneity. For continued participation, we recommend a tailored intervention and further studies to find out whether and how online programs could be used to support parents in the management of their child’s CKD.

Trial Registration

Netherlands Trial Registry NTR4808; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4808 (Archived by WebCite at http://www.webcitation.org/719rCicvW)

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Most cited references 25

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Type D personality, mental distress, social support and health-related quality of life in coronary artery disease patients with heart failure: a longitudinal observational study

Margarita Staniute, Julija Brozaitiene, Julius Burkauskas … (2015)

Background The relationship between Type D personality and health related quality of life (HRQoL) in coronary artery disease patients is becoming more established, however, the factors that may explain this association remain unclear. The objective of the study was to examine the mediating effects of mental distress and social support on the relationship between the Type D personality and HRQoL in CAD patients with heart failure. Methods A total of 855 CAD patients with heart failure were assessed on Type D personality, mental distress, perceived social support and HRQoL with the following self-administered questionnaires: the Type D personality scale - 14, the Hospital Anxiety and Depression scale, the Multidimensional Scale of Perceived Social Support and the Minnesota Living with Heart Failure Questionnaire. Results The prevalence of Type D personality within the study population was 33.5%. Type D personality, anxiety symptoms, depressive symptoms and social support were all found to be determinants of decreased HRQoL (p’s < 0.001), once age, gender, NYHA functional class and acute myocardial infarction were adjusted for. Anxiety, depressive symptoms and social support were found to mediate the relationship between Type D personality and HRQoL. Type D personality exerted a stable effect on HRQoL over 24 months follow-up period. Conclusions Type D personality has an independent significant effect on the HRQoL in CAD patients with heart failure, and this relation is mediated by anxiety and depressive symptoms, social support.

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The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base.

J Barlow, D R Ellard (2006)

Chronic disease of childhood may have implications for the psychosocial well-being of children and their families. The purpose of this paper is to provide an overview of the current literature regarding the psychosocial well-being of children with chronic disease, their parents and siblings. Electronic searches were conducted using AMED, CINAHL, Cochrane Database, DARE, HTA, MEDLINE, NHS EED, PsycLIT, PsycINFO and PubMED (1990 to week 24, 2004). Inclusion criteria were systematic reviews, meta-analyses and overviews based on traditional reviews of published literature. The titles of papers were reviewed, abstracts were obtained and reviewed, and full copies of selected papers were obtained. Six reviews of the psychosocial well-being of children were identified: three on chronic disease in general, one on asthma, one on juvenile idiopathic arthritis and one on sickle cell disease. Two reviews of psychosocial well-being among parents and two reviews of sibling psychosocial well-being were identified. Evidence from meta-analyses shows that children were at slightly elevated risk of psychosocial distress, although only a minority experience clinical symptomatology. The proportion that experience distress remains to be clarified, as do contributory risk factors. Few conclusions can be drawn from the two reviews of parents. However, a meta-analysis of siblings showed that they are at risk from a number of negative effects. This overview has highlighted the need to extend the evidence base for psychosocial well-being of children, parents and siblings.

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Internet Use and eHealth Literacy of Low-Income Parents Whose Children Have Special Health Care Needs

Caprice Knapp, Vanessa Madden, Hua Wang … (2011)

Background The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. Objective For parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy. Methods This was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida’s Medicaid and State Children’s Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives. Results The survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001). Conclusion Low-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.

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Author and article information

Contributors

Wytske W Geense:

IQ HealthcareRadboud Institute for Health ScienceRadboud University Medical CenterPO Box 91016500 HDNijmegen,Netherlands31 24 36 66 868wytske.geense@radboudumc.nl

ORCID: http://orcid.org/0000-0001-6497-6158

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: August 2018

Publication date (Electronic): 01 August 2018

Volume: 20

Issue: 8

Electronic Location Identifier: e245

Affiliations

[1] ¹ IQ Healthcare Radboud Institute for Health Science Radboud University Medical Center Nijmegen Netherlands

[2] ² Institute of Nursing HAN University of Applied Science Nijmegen Netherlands

[3] ³ Department of Pediatric Nephrology Amalia Children’s Hospital Radboud University Medical Center Nijmegen Netherlands

[4] ⁴ Department of Medical Psychology Radboud University Medical Center Nijmegen Netherlands

[5] ⁵ Department of Work & Social Psychology Maastricht University Maastricht Netherlands

Author notes

Corresponding Author: Wytske W Geense wytske.geense@ 123456radboudumc.nl

Author information

Wytske W Geense http://orcid.org/0000-0001-6497-6158

Betsie GI van Gaal http://orcid.org/0000-0001-8884-6235

Jaqueline L Knoll http://orcid.org/0000-0002-3012-5838

Nienke M Maas http://orcid.org/0000-0001-9839-4922

Gerjo Kok http://orcid.org/0000-0002-3501-4096

Elisabeth AM Cornelissen http://orcid.org/0000-0002-1156-5264

Maria WG Nijhuis-van der Sanden http://orcid.org/0000-0003-2637-6877

Article

Publisher ID: v20i8e245

DOI: 10.2196/jmir.9547

PMC ID: 6094085

PubMed ID: 30068502

SO-VID: aecd45a6-d290-46e5-afd6-d18076c78c1b

Copyright © ©Wytske W Geense, Betsie GI van Gaal, Jaqueline L Knoll, Nienke M Maas, Gerjo Kok, Elisabeth AM Cornelissen, Maria WG Nijhuis-van der Sanden. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 01.08.2018.

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 : 1 December 2017

Date revision requested : 28 December 2017

Date revision received : 30 April 2018

Date accepted : 8 May 2018

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