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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering

Children of patients with severe illness or substance abuse: Prevalence, identification, perceived needs, services received and outcome

Awarded: NOK 9.6 mill.

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2012 - 2017


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OBJECTIVE The project's goal has been to provide new knowledge about the situation of children with parents who are patients in the specialist health service. The project focuses on the children's situation and experience, the parents' experience of the children's situation and their own situation, how the disease affects everyday life and health, what challenges the family experiences, what help they want, what help they have received as children and parents, and how they have experienced this help. DESIGN The project is an exploratory cross-sectional multi-center study with many families from five health trusts. Information has been collected by the questionnaires for children/adolescents, parents, clinicians and teachers. Children of patients with mental illness, substance abuse, or serious somatic disease are included. A follow-up study of the same families has also been done a year later. A separate PhD study has examined the health trusts' implementation of the statutory follow-up of children as relatives, by questionnaires to managers, childcare officers and healthcare professionals. PARTNERS AND FINANCING Akershus universitetssykehus HF is responsible for the project, and project manager is Torleif Ruud. Partners are Nordlandssykehuset HF, Vestre Viken HF, Sørlandet sykehus HF, Helse Stavanger HF (Stavanger universitetssykehus), Rogaland A-senter, Regionalt senter for barn og unge I helse øst og sør (RBUP øst og sør) and BarnsBeste. In addition to local coordinators in each health trust and five research fellows, more than 30 others have been involved in recruiting families and data collection. The main funding is from the Norwegian Research Council. The partners in the project also contribute with resources. The Norwegian Directorate of Health has financed the follow-up study, two qualitative sub-studies and five reports that are mentioned under publication. Helse Nord RHF has funded the PhD study on implementation of statutory follow-up of children as relatives, and Sørlandet Hospital has funded a PhD student. The project has been approved by the Regional Committee for Medical and Health Sciences Research Ethics South-East (2012/1176 A) and by the data protection officers of the health trusts. MAIN STUDY Children, parents, clinicians and teachers have participated in the main survey by filling in a questionnaire on a tablet or PC. The 534 families included are 202 in general somatic health care (neurology, cancer), 199 in mental health care and 133 in substance abuse services. Questionnaires are completed by 246 children/adolescents, 518 ill parents, 266 other parents/adults, 278 clinicians and 125 teachers. A total of 316 (59%) of the 534 families in the main study also participated in the follow-up study. PUBLICATIONS There were published two international and five Norwegian articles from the project by October 2017, and two articles are being reviewed in international journals. Ten articles will be submitted to international journals during the autumn 2017 and winter 2018, and another five articles are expected to be submitted later in 2018. The four PhD students are expected to submit their dissertations in 2018. A report with descriptive preliminary results from the main study was published by the Norwegian Directorate of Health in November 2015 in connection with a national conference on children as relatives. The report (Barn som pårørende, Rapport IS-0522, Helsedirektoratet 2015) can be downloaded from the Directorate of Health. The report has been of great interest, and the results of the report are used by many projects and health authorities and municipalities in the work to improve follow-up of children with ill parents. The partners also aim to develop further research collaboration regarding children as relatives and family-focused healthcare. Researchers and fellows from the project participate in an international research network about children as relatives, and they are invited to participate in a research collaboration that Monash University in Melbourne has entered into an agreement with Akershus University Hospital. The funding from the Norwegian Directorate of Health has covered the preparation of the main report, a qualitative study of living conditions for adult relatives of people with substance abuse problems (Report IS-2399. Helsedirektoratet 2015), a qualitative study of living conditions for children and adolescents with substance abuse problems (Report IS-2398 , Helsedirektoratet 2015), a report on the follow-up study is published in the autumn of 2017, and a literature review on living conditions and interventions for children and adult relatives of people with substance abuse will be published in 2018.

THEMES Prevalence rates of children experiencing mental disorder, substance abuse or severe somatic illness of parents referred to specialised health services. Characteristics of children and families, and how they perceive their situation. To what extent the children are identified and followed-up through the ordinary procedures. Situation and outcomes of children and families after 12 months. Comparison of subgroups related to types of disorders and health authorities. DESIGN An epidemiological and exp lorative study with a representative sample (N=900) from five health authorities serving 34 % of the population of Norway. We include 60 children in each group (mentally disordered, drug abusing or severely somatically ill parents) in each of the five hea lth authorities. Stratified samples are drawn to recruit a feasible number of cases per week for 18 months. Using well defined procedures and well trained interviewers, we expect to recruit a larger proportion than those identified by the ordinary procedu res, in order to estimate unidentified cases and study barriers for identification of these. Interviews of children and their parents will be done by trained researchers, clinicians and master grade students. We collect data on identification of children by the ordinary procedures, and we aim to do a 12 months follow-up study of a subsample or the whole sample. We will analyse the association between implementation of procedures and proportion of children identified in the services. The interviews of ch ildren and parents are composed of well established instruments. Procedures for identification, recruitment and interviews of children and parents were pilot tested in February 2012. Implementation of standard routines of identification and follow-up will be assessed in relation to each child and family included in our study. Distributed of research themes and publications among research fellows and partners will agreed upon before the start of data collection.

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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering