eHealth as an Aid for Facilitating and Supporting Self-management in Families With Long-term Childhood Illness - Development, Evaluation and Implementation in Clinical Practice

The overall incidence of congenital malformations in the gastrointestinal and urinary tract needing surgical interventions is about 1:1000 (Swedish national malformation registers) with a morbidity during childhood about 20-60%. Advanced paediatric surgery for the diagnosis Hirschsprung's disease, anorectal malformations, bladder extrophy, congenital diaphragmal hernia, and esophageal atresia is from July 2018 only performed at two NCSM in Sweden. The NCSM at Skåne University Hospital (SUS) in Lund forms one context. The quality of postoperative care is of immense importance both for short and long-term outcome. Legal guardians describe their situation after leaving the hospital as extremely stressful as they have not only to take responsibility for their new-born child but also of surgical wounds, medications, treatments, and special nutritional needs.

In Sweden, about 8-10 in 1000 children per year are born with congenital heart disease (CHD). CHD is a birth defect that leads to frequent hospitalisation, long hospital stays, and extreme anxiety for parents (18). In Sweden, paediatric heart surgery is concentrated to two NCSM of which one is situated at SUS, Lund where 250-300 children have cardiac surgery every year. Children with complicated CHD require contact and follow-up visits for a long time after the heart surgery and many families have to travel long for surgery (for example from Iceland), postoperative care and follow-up visits. Telemedicine after reconstructive cardiac surgery in children is shown to be feasible, although challenging and reduced unscheduled visits.

Most prematurely born children grow up to be healthy, but as a group, they are at a greater risk of developing cognitive, emotional and behavioural problems. Every year 7% of all children are born prematurely (gestational age of less than 37 weeks) and the numbers of preterm births are rising in Sweden as well as internationally. Preterm births often involve long hospitalisations for children and parents, and discharge from the hospital often means a difficult transition for parents in both short and long-term perspectives. Traditionally, communication with parents following discharge has been through home visits or telephone calls. By communicating through digital technology, it may be possible to improve the support to parents and thereby make the transition from hospital to home less stressful.

For children with cancer, treatment and follow-up at home is common. At the same time, families wish to minimize the negative impact on family members' social and everyday life. Home medication management is a high-risk area and medication errors are common, particularly among parents of children with cancer. Thus, parents are responsible for complex care and regular follow-up in their home with an increased need for education as well as clinical management support. At present, there are no, or limited, professional outreach support to support them and their families. Communication with parents following discharge has been through e-mail and/ or telephone calls. By communicating through digital technology, it may be possible to improve the support to children and parents.

For children with LTI administration of intravenous infusion therapy at home is an increasingly important area. Home medication management is a high-risk area and medication errors are common, particularly among parents of children with cancer. Thus, parents are responsible for complex care in their home with an increased need for educational as well as clinical management support during home infusion therapy. At present, children and adolescents with LTI at the University Hospital of Copenhagen receive home infusion therapy by a portable pump with no assistance from an outreaching team to support them and their families.

Cerebral palsy (CP) is the most common physical disability in childhood. Approximately 2-2.5/1000 children have CP with affected muscle tone, movement and motor skills, often accompanied by pain, epilepsy and intellectual, communicational and behavioural impairment. Early detection is challenging but important for minimizing the consequences from neurodevelopmental impairment by an early and right treatment. General Movement Assessment (GMA), an observational method for classification of spontaneous movements in young infants, is currently the most accurate method for early identification of CP. Video recordings are taken with a standardised video set-up in the hospitals regular follow-up clinics when the child is 10 to 20 weeks post-term age. Performing video recordings at home by the parents at a time, which suits the family and the child, would optimize the chances for a successful recording.

Adolescents living with HIV constitute key affected population groups in Ethiopia with HIV being the second cause of death among adolescents in the country. Adherence to antiretroviral therapy (ART) is critical to ensure the effectiveness of HIV treatment; high levels of adherence have been consistently associated with improved virologic, immunologic, and clinical outcomes with a consequent increase in survival and quality of life. Thus, the overall purpose of this project is to increase HIV positive adolescent's adherence to ART and retention in care thereby to better prolong their lives.