Måleredskaber og interventioner til børn med lette og svære funktionsevnenedsættelser

Måleredskaber og interventioner til børn med lette og svære funktionsevnenedsættelser

Eva Nordmark Leg. Fysioterapeut, Dr. Med. Vet. Docent Pediatrisk sjukgymnastik Lektor i handikappvetenskap med inriktning Habilitering. Institutionen för Hälsovetenskaper Forskargruppen Barns och familjers hälsa & reproduktiv hälsa. Medicinska fakultetens Centrum för Undervisning och lärande (MedCUL), Lunds universitet.

Symposiet vil sætte fokus på Vilka udfordringer er der i at udmåle og evaluere funktionsnedsættelserne og funktion? udvælge de optimale måleredskaber og interventioner? give eksempler på hvordan vi udvikler og implementer ny viden i klinisk praksis

Hvad ved vi om indsatsen til børn med svære funktionsevnenedsættelser? Hvilke fremskridt har forskningen gjort? Hvor er vores viden utilstrækkelig og hvilke udfordringer møder børnefysioterapeuten?

Hel Who & Why & How?

Inspirera Evidensbasera Reflektera Aktivera Diskutera

Nya inriktningar i teori och tillämpning 2002 2013 11

A systematic review of interventions for children with cerebral palsy: state of the evidence Novak I et al 2013 Developmental Medicine & Child Neurology Volume 55, Issue 10, pages 885-910, 21 AUG 2013 DOI: 10.1111/dmcn.12246 http://onlinelibrary.wiley.com/doi/10.1111/dmcn.12246/full#dmcn12246-fig-0003 12

I vilken riktning går fysioterapin? Vetenskaplig grund Hälsofrämjande insatser Barnets och familjens roll i samarbetet Familjecentrerat

Familje- och klient centrerad vård Bronfenbrenner U. 2005, Making human beings human,sage Pub.

Pathways of participation Children share power and responsibility for decision-making Children are involved in decision-making process Children s views are taken into account Children are supported in expressing their views Children are listened to Shier H 2006 Wong et al 2010 DOI 10.1007/s10464-010-9330-0 15

Leadership Resources Lack of selfconfidence Lack of motivation Lack of time Critical appraisal Education Good outcomes Professional development Research With permission from Eva Brogren Carlberg, Sweden Patients values Clinical expertise

Stop Quality evidence proving ineffective Insufficient evidence therefore evaluate Quality evidence Proving effective

A systematic review of interventions for children with cerebral palsy: state of the evidence. Vem? Novak I, McIntyre S, Morgan C, Campell L, Morton N, Stumbles E, Wilson SA, Goldsmith S. Cerebral Palsy Alliance, Sydney, Australia; University of Notre Dame Australia, Sydney, Australia. Gör vad? En systematisk review av reviewer Hur? Två oberoende bedömare, väljer ut studier bland de bästa eller näst bästa tillgängliga studier som uppfyller kriterierna (medicinska o allied health) interventioner där minst 25% av deltagarna har CP. Kodar med the Oxford Levels of Evidence;GRADE; Evidence Alert Traffic Light och ICF.

Resultat och rekommendation 16% 'do it' (green go) 58% 'probably do it' (yellow measure) 20% 'probably do not do it' (yellow measure) 6% 'do not do it' (red stop) bimanual training, botulinum toxin, casting, constraint-induced movement therapy, context-focused therapy, fitness training, goaldirected training, hip surveillance, home programmes, occupational therapy after botulinum toxin, pressure care, and selective dorsal rhizotomy De flesta (70%) evidens för intervention = lower level (yellow) och 6% ineffektiva (red) All yellow light interventions should be accompanied by a sensitive outcome measure to monitor progress Red light interventions should be discontinued since alternatives exist!!!

Kroppsfunktion & Kroppsstruktur A systematic review of interventions for children with cerebral palsy: state of the evidence Novak I et al 2013

Aktivitet & Delaktighet Do it Effective Probably do it Probably don t do it Don t do it Ineffective A systematic review of interventions for children with cerebral palsy: state of the evidence Novak I et al 2013

Leadership Resources Lack of selfconfidence Lack of motivation Lack of time Critical appraisal Education Good outcomes Professional development Research With permission from Eva Brogren Carlberg, Sweden Patients values Clinical expertise

Interaktioner mellan komponenterna i ICF Hälsobetingelse Störning/sjukdom Kroppsfunktioner/ kroppsstrukturer Aktiviteter Delaktighet Omgivningsfaktorer Personliga faktorer

Palisano et al Mobility Experiences of Adolescents with Cerebral Palsy, Physical & Occupational Therapy in Pediatrics Vol 29(2),2009 Health condition Youth with CP Body function & Structure Motor control, Muscle performance Skeletal alignment, ROM Activities Mobility Participation Family life, School work, Community, Leisure activities Relationships Environmental factors Accessibility, Accommodation, Supports, Resources, Availability of services Personal factors Age, Gender, Self-efficacy, Interests, Goals

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The F-words The F-words in childhood disability: I swear this is how we should think! Peter Rosenbaum and Jan W Gorter Child: care, health and development,2011,38,4,457-463. Acknowledgement to Johanna Darrah Family, function and fitness

The F-words Health Condition Fitness Function Friendships Family factors Fun

https://lup.lub.lu.se/s earch/publication/49 40807

F-word # 1 Function Lång Biomedicinsk tradition begränsningar, hinder nedsättningar..eller. se funktionsmöjligheter Fixa funktionsnedsättningen.eller.. anpassa uppgiften Child focus approach bottom up, utreda, åtgärda, tillrättalägga, normalisera Context-focused approach-top down, identifiera funktionella mål, aktivt lösa uppgifter i omgivningen

What is Functional status? Is related to health, but is narrower construct, refers to the ability to carry out roles required to fulfill an individual s fundamental needs as well as to support health and wellbeing..

Mål Förhindra höftluxation och kontrakturer och därigenom optimera funktion och livskvalitet Förbättra samarbetet Öka kunskapen om CP

Families needs and priorities F-word # 2 Family factors Bamm EL, Rosenbaum P. Familiy-Centered Theory: Origins, Development, Barrriers, and Support to Implement in Rehabilitation Medicine.Arch Phys Med Rehabil Vol 89, 2008 Measures of Processes of Care for Service Providers MPOC Jeglinsky I et al. Two sides of the mirror: parents and service providers view on the familiy-centredness care for children with cerebral palsy. Child, Health and Development 2012;38:70-78

F-word # 3 Fitness Innes J, Darrah J. Sedentary Behavior: Implications for Children With Cerebral Palsy. Pediatr Phys Ther. Jul 29 2013. STAY FIT program of Research 2009-2015 Canchild LEARN 2 MOVE 7-12 yrs Lauruschkus K. Participation in physical activities and sedentary behaviour among children with physical disabilities. Thesis 2015 https://lup.lub.lu.se/search/publication/4940807

F-word # 4 Fun Play and be happy? Leisure participation and Quality of Life Wellbeing Doing stuff.. It s fun but

F-word # 5 Friendship

F-word # 6 Future All children are becoming Think about the future in a positive way already from the start encourage the parents to do so as well. Address function, family, fitness, fun and friends will always reminds what is important in the development of all children.

Sedentary Behavior

Strengths-based service The importance of looking at abilities as well as needs. Service must address needs that are meaningful to each individual and must be based on accurate assessments that take into consideration each persons abilities and areas of interest also taken into account culture and ethnicity.

Participation-based therapy for children with physical disabilities Palisano RJ, Chiarello LA, King G, Novak I, Stoner T, Fiss A. Disabil Rehabil. 2012;34(12):1041-52. Epub 2011 Nov 14. Hur kan man optimera delaktighet hemma och ute i samhället? Vad vet vi från forskning och teorier om delaktighet hos barn med funktionsnedsättningar? Konstruerar en modell; formulerar principer kring deltagarbaserad fysio- och ergoterapi, utvecklar fem stegs process intervention, gör en case-report för att illustrera de olika stegen. En dynamisk interaktion mellan barn- familj, omgivning och dimensioner som fysiska, sociala och själv engagerande.

Participation-based therapy for children with physical disabilities Palisano RJ, Chiarello LA, King G, Novak I, Stoner T, Fiss A. Disabil Rehabil. 2012;34(12):1041-52. Epub 2011 Nov 14. Verkliga livet medför att barn lär nya aktiviteter och utvecklar färdigheter som optimerar deras delaktighet och självbestämmande. Interventionen är målrelaterad, familjeorienterad, samarbetande,stärkande och självbestämmande. Terapeuten är konsulterande, och samarbetar med barn, familj och samhällsstödet för att dela information, utbildning och instruktioner som utvecklar förmågan att kunna leva i samhället.

Strengths-based service The importance of looking at abilities as well as needs. Service must address needs that are meaningful to each individual and must be based on accurate assessments that take into consideration each persons abilities and areas of interest also taken into account culture and ethnicity.