About the project
Habilitation services for adults with complex disabilities is a research area that needs to be strengthened in terms of researched based knowledge and capacity. A national survey of habilitation service for adults was therefore initiated as part of a national and international collaboration in order to gain a better understanding of health and life situation in people with mental disabilities, as well as the well being of the families and the the quality of health services for this group. In addition, a pilot project with a detailed survey of services and needs at the individual level was carried out.
The national survey was based at the Department of Adult Habilitation, Oslo University Hospital and was carried out in collaboration with the Habilitation Services for adult persons in Norway. It was led by a project group with cand. Psychol Nils-Øivind Offernes as the project manager.
The pilot project on individuals with mental disabilities was anchored in the University Hospital in Tromsø and was led by Professor Audny Anke. The network included researchers with various research background, and with representation from all of the health service regions in Norway.
Chief physician Anne-Katrin Holmøy carried out the pilot project on services and service needs in people with muscular dystrophies.
Objectives
The aim of the project is to 1) provide new and relevant knowledge as a basis for evaluation and improvement of services, the survey is also expected to provide a basis for shedding light on the research issues and forming the basis for new research; 2) build up research knowledge and capacity in the field, as well as to establish international collaboration with relevant research groups; 3) survey the health and life situation of individuals with mental disabilities and muscular dystrophies, the confounding conditions, the types of services provided and the extent of unmet needs and 4) promote the dissemination and implementation of research results.
Public Involvement
CHARM's service user representative panel
Results
The national survey is summarized in a report to the Norwegian Directorate of Health - see the report here (in Norwegian only).
Funding
The PhD project was funded by the Research Council of Norway through CHARM. The national survey was funded by the Norwegian Directorate of Health. The pilot project was funded by the Foundation of the Oslo University Hospital.
Cooperation
National survey: All habilitation services for adults in the country, Oslo University Hospital, University Hospital in Northern Norway and Sunnaas Hospital.
Mental disability: Network with professionals with relevant but different academic backgrounds and with representation from the universities in Oslo, Bergen, Trondheim and Tromsø.
Start and End
2014 - 2018
Results
-
Cognitive Performance After a One-Year Multidisciplinary Intensive Rehabilitation Program for Huntington's Disease: An Observational Study. J Huntingtons Dis. 2018;7(4):379-389. doi: 10.3233/JHD-180294. Van Walsem MR, Piira A, Mikalsen G, Fossmo HL, Howe EI, Knutsen SF, Frich JC.
-
Uncovering health and social care needs among myotonic dystrophy patients: Utility of the Needs and Provisions Complexity Scale. Acta Neurol Scand. 2019 Jun;139(6):526-532. doi: 10.1111/ane.13086. Epub 2019 Mar 25. Holmøy AKT, Johannessen CH, Hope S, van Walsem MR, Aanonsen NO, Hassel B.
-
Therapeutic Use of Music, Dance, and Rhythmic Auditory Cueing for Patients with Huntington's Disease: A Systematic Review. J Huntingtons Dis. 2019 Aug 22. doi: 10.3233/JHD-190370. Schwartz AE, van Walsem MR, Brean A, Frich JC.
- Neuropsychiatric symptoms in a European Huntington's disease cohort (REGISTRY), J Neurol Neurosurg Psychiatry. 2014 May 14, van Duijn E, Craufurd D, Hubers AA, Giltay EJ, Bonelli R, Rickards H, Anderson KE, van Walsem MR, van der Mast RC, Orth M, Landwehrmeyer GB; the European Huntington's Disease Network Behavioural Phenotype Working Group.
- Effects of a Two-Year Intensive Multidisciplinary Rehabilitation Program for Patients with Huntington’s Disease: a Prospective Intervention Study, PLOS, Huntington Disease, November 25, 2014, Piira A, Van Walsem, M, Mikalsen G, Øie L, Frich J, Knutsen S.
- Unmet needs for healthcare and social support services in patients With Huntington’s disease: a cross-sectional population-based study, Ojrd (2015) 10:124, DOI 10.1186/s13023-015-0324-8, Van Walsem MR, Howe EI, Iversen K, Frich JC, Andelic N.
- Gaps between needs and provision of services in Huntington’s disease: a cross-sectional population study. J Neurology, Neurosurgery, and Psychiatry 2016; 87. Suppl. 1 s. A79-A79. Van Walsem MR, Howe EU, Frich MC, Andelic N.
- Healthcare needs of patients with Huntington's disease in the South-East Region of Norway. Journal of Neurology, Neurosurgery, and Psychiatry 2014 ;Volum 85. Suppl. 1 s. A85-A85, Van Walsem RM; Howe E; Frich JC; Andelic N.
- Utilisation of cognitive aids and quality of life in HD patients. Journal of Neurology, Neurosurgery, and Psychiatry 2014; Volum 85. Suppl. 1 s. A90-A90, Howe, Emilie; Van Walsem, Regina Marleen; Frich, Jan C; Andelic, Nada.
- Assistive Technology for Cognition and Health-related Quality of Life in Huntington's Disease. J Huntingtons Dis. 2016 Oct 1;5(3):261-270. Van Walsem MR, Howe EI, Frich JC, Andelic N.
- Doktorgradsavhandling: Unmet healthcare needs, healthrelated quality of life and assistive technology for cognition in Huntington’s disease. A population-based cross-sectional study. Van Walsem, RM.