eHealth as an Aid for Facilitating and Supporting Self-management in Families With Long-term Childhood Illness

Summary

The overall aim is twofold: 1) to stretch the borderline regarding the present knowledge of clinical and economic cost-effectiveness of eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness, and 2) to develop a sustainable multidisciplinary research environment for advancing, evaluating, and implementing models of eHealth to promote self-management for children and their families.

A number of clinical studies are planned for, covering different parts of paediatric healthcare. The concept of child-centred care is essential. Experienced researchers from care science, medicine, economics, technology, and social science will collaborate around common issues. Expertise on IT technology will analyse the preconditions for using IT; economic evaluations will be performed alongside clinical studies; and cultural and implementation perspectives will be used to analyse the challenges that arise from the changes in relations among children, family and professionals, which may occur as a result of the introduction of eHealth.

Child health is not only important in itself. Investments in child health may also generate significant future gains, such as improved educational and labour market performance. Six complex, long-term and costly challenges in paediatric healthcare are planned for, involving eHealth technology such as interactive video consultation, pictures, on-line monitoring, and textual communication. The research follows an international framework for developing and evaluating complex interventions in healthcare. End-users (families) and relevant care providers (professionals in health and social care) will participate throughout the research process. The overall aim is certainly to analyse eHealth as an aid for facilitating and supporting self-management. However, the plan also includes the research issue whether eHealth at the same time improves the allocation of scarce health care- and societal resources.

Conditions

• Preterm Birth
• Pediatric Cancer
• Hirschsprung Disease
• Congenital Malformation
• Congenital Heart Disease
• Nutrition Disorder, Child
• Hiv
• Adherence, Patient

Interventions

DEVICE

e-health device with application

In this project we focus on eHealth solutions for patients and/or their families in situations where they could benefit from enhanced communication options with specialist staff. In this design space we use a model where a 4G-enabled tablet computer is lent to the families for the length of the study, thus avoiding economic requirements on the families and keeping the equipment uniform. The tablets run an application that enables multiple forms of direct and bi-directional communication in real-time with specialist staff at the hospital. For the staff, the technical situation is different; here we have in earlier demonstrators used web-based solutions accessed with existing computer equipment.

DEVICE

Mobile phone text messaging

Text message reminders will be developed by professional health communication/promotion experts together with a group of adolescents, and the project group and delivered to the intervention group in the language which the participants choose. Message delivery will be timed to coincide with each participant's individual dosing schedule. A simple mobile phone will be given to each of the participants. Text messaging will be used only for the adolescents in the intervention group and only in addition to routine care. Text messages will be delivered on a daily basis during the six-month intervention period.

DEVICE

early detection of cerebral palsy using a mobile phone application

Develop and test reliability for a method for assessing early detection of cerebral palsy using a mobile phone application where parents film their child and the videos are sent for assessment by an expert panel.

DEVICE

Self-care for children with intravenous treatment at home

Develop a digital application, "MyCarePlan" in the child's digital journal to strengthen the parents and help them with self-care with support from the staff.

Sponsors & Collaborators

• Skane University Hospital

  collaborator OTHER

• Rigshospitalet, Denmark

  collaborator OTHER

• Arba Minch University

  collaborator OTHER

• University of Iceland

  collaborator OTHER

• Lund University

  lead OTHER

Principal Investigators

• Inger Kristensson Hallström, PhD · Lund University

Study Design

Allocation

NON_RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

3 Days

Max Age

19 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2019-10-15

Primary Completion

2025-10-30

Completion

2025-10-30

Countries

• Denmark
• Ethiopia
• Sweden

Study Locations