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

NCT04150120

CompletedNA

Sponsor: Lund University

Conditions: Preterm Birth, Pediatric Cancer, Hirschsprung Disease, Congenital Malformation, Congenital Heart Disease

Interventions: e-health device with application, Mobile phone text messaging, early detection of cerebral palsy using a mobile phone application, Self-care for children with intravenous treatment at home

Countries: Denmark, Ethiopia, Sweden

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.

Eligibility overview

Sex: ALL

Age: 3 Days to 19 Years

Healthy volunteers: No

Study type: INTERVENTIONAL

Eligibility criteria
Inclusion Criteria (Intervention group):

Legal guardians of children below four years of age who are hospitalised for:

* reconstructive surgery for congenital malformations
* cardiac surgery for CHD
* premature birth
* paediatric cancer and in treatment
* are in need of nutritional supplements
* are about to be discharged from the hospital
* are able to communicate in the local language (Swedish in Sweden and Danish in Denmark)
* signs informed consent

For the Ethiopian arm:

Adolescents, aged 15-19, living with HIV and currently enrolled in ART care for two years or less, being able to read the local language and willing to participate in the study will be eligible for the study.

Inclusion Criteria (Control group):

Legal guardians of children below four years of age who fulfil the intervention group inclusion criteria but:

* do not want to use the e-device
* not recruited for the intervention group
* are recruited after the stipulated numbers for the intervention group are met

For the Ethiopian arm:

Adolescents, aged 15-19, living with HIV and currently enrolled in ART care for two years or less, being able to read the local language and willing to participate in the study will be eligible for the study.

Exclusion Criteria:

* Legal guardians of children fulfilling the inclusion criteria but where the child has complications or comorbidity which may affect the results of the study (as defined by the responsible medical physician)
* The legal guardian refuses to sign informed consent.

For the Ethiopian arm:

Patients outside of the specified age and adolescents, who are in patient-department, and adolescents who cannot read.
Locations (7)
  • Copenhagen, Denmark
  • Hillerød, Denmark
  • Arba Minch, Southern Nations, Nationalities, and Peoples' Region, Ethiopia
  • Lund, Skåne County, Sweden
  • Lund, Skåne County, Sweden
  • Lund, Skåne County, Sweden
  • Lund, Skåne County, Sweden