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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

Forebygging av mentale vansker blant søsken til barn med kronisk sykdom i kommuner og spesialisthelsetjenesten med innovasjonen "SIBS"

Alternative title: Preventing mental health problems for siblings of children with chronic disorders in municipalities and specialist mental health services

Awarded: NOK 7.0 mill.

The aim of the project is to improve mental health, quality of life and family communication for siblings of children with chronic disorders. The background is that sibling relations are life?s longest lasting relationships. These relations can get complicated for families of children with chronic disorders. Siblings of children with chronic disorders are at increased risk of mental health problems, including anxiety, depression, behaviour problems, and poor self concept. Health personnel are obliged by law to support siblings of children with severe illness. However, there are no interventions for siblings with documented effects. We want to do something about that. In collaboration with municipal and specialist health services, national and international universities, and several patient user organizations, we have developed a group intervention for siblings and parents of children with chronic disorders. The intervention is called SIBS, and comprises parallel groups for siblings and parents, including parent-child dialogues, delivered over 2 half days. We have evaluated SIBS in an open research trial with 99 families, with promising outcomes. We now want to examine SIBS in a randomized controlled design to examine effects. Half the participants will receive the intervention immediately, and half will be randomly drawn to wait 12 weeks before intervention. The project is led by Lillestrøm municipality and comprises 2 additional municipalities and five hospitals. We will include 288 siblings aged 8-16 years and their parents. We will examine effects up to 12 months after the intervention. We will also examine risk factors that determine how siblings are coping, including genetic risk, and investigate what group leaders can do to deliver the groups optimally. The project is underway and by December 2021, we have completed almost 50 groups with approximately 180 participants. During the period, we have published 7 scientific articles and given various presentations. Two of the articles are review articles of existing studies. One of these showed that sibling's social abilities may be related to the type of diagnosis the brother or sister has. The other showed that siblings of children with ADHD have a slightly increased risk of mental health problems. Two of the articles have been method articles where we have examined the measurement properties of questionnaires about communication and adaptation among siblings of children with disabilities. The findings showed that these questionnaires work well for this group. This is important because we use these questionnaires in the ongoing effect study. The other three articles describe different topics among siblings and parents who participate in our study. A study showed that siblings of children with disabilities have good social skills. Another article showed that siblings' adaptation to their brother or sister's diagnosis is related to their mental health. The final article showed that school children and adult health professionals do not always agree on what is supportive behavior in support groups for children, based on having seen short video vignettes from our sibling groups (recorded with actors). This latest study is important because it gives us information about what a group intervention must contain in order for children to experience the groups as supportive.

Formålet er å bedre mental helse blant søsken til barn med kronisk sykdom. Søskenforhold er livets lengste relasjoner. Disse relasjonene utfordres i familier hvor barn har kronisk sykdom, det vil si langvarige tilstander som det vanligvis ikke finnes behandling for, slik som genetiske syndromer. Søsken til barn med kronisk sykdom har økt risiko for mental uhelse, inkludert depresjon, angst, atferdsvansker og lavt selvbilde. Helsepersonell er lovpålagt å støtte søsken til barn med alvorlig sykdom (Helspersonelloven §10a). Likevel finnes ingen intervensjon for søsken med dokumentert effekt. Dette vil vi gjøre noe med. I samarbeid mellom kommune- og spesialisthelsetjenesten, universiteter i Norge og utlandet, samt flere brukerforeninger, har vi utarbeidet en intervensjon for søsken og foreldre til barn med kronisk sykdom. Intervensjonen, kalt "SIBS" fra engelsk "siblings", er innovativ fordi: a) ingen standardiserte tilbud finnes for søsken; b) SIBS består av parallelle grupper for søsken og foreldre med integrerte dialoger mellom foreldre og barn; c) SIBS varer 2 halve dager, som er kortere enn tidligere intervensjoner som tilpasning til brukerbehov; og d) den kan leveres fleksibelt i kommune- eller spesialisthelstetjenesten, eller over internett. SIBS er prøvd ut i en åpen studie med 99 familier og viste vesentlig bedring for søsken. Nå skal vi prøve ut intervensjonen i en randomisert kontrollert studie for å dokumentere effekten mot venteliste. Prosjektet ledes fra Lillestrøm og foregår i 3 kommuner og 5 sykehus. Vi skal inkludere 288 søsken (alder 8-16 år) og foreldre til barn med kroniske sykdom. Halvparten av deltakerne trekkes tilfeldig til 3 måneders venteliste før de får intervensjon. I tillegg skal vi undersøke om effektene vedvarer etter 12 måneder, hvordan gener og barnet med sykdom sin fungering påvirker effekten for å finne ut hvordan SIBS virker for hvem, og identifisere de hvilke gruppelederstrategier som gir mest effektivt tilbud til søsken.

Publications from Cristin

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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester