Familiesentrert målsetting og evaluering: Bruk av standardiserte og individualiserte instrumenter

Hensikt: Utforske hvordan kartlagte aktivitetsproblemer og funksjoner i individualiserte og standardiserte instrumenter reflekteres i foreldrevalgte mål. Sammenligne hvordan instrumentene fanger opp endring. Design og Metode: En kvantitativ studie av individualiserte og standardiserte instrumenter. Materiale: Tretten barn med cerebral parese (CP), gjennomsnittsalder to år og åtte måneder, som deltok i et familiesentrert habiliteringsprogram. Canadian Occupational Performance Measure (COPM), Goal Attainment Scaling (GAS), Pediatric Evaluation of Disability Inventory (PEDI) og Gross Motor Function Measure (GMFM-66). Resultat: Foreldrene identifiserte 53 aktivitetsproblemer i COPM og 74 mål i GAS, hovedsakelig innen kategoriene personlig stell, mobilitet og lek. Førtifem prosent foreldrevalgte GAS mål samsvarte med problemer i ferdigheter/aktiviteter i COPM og i PEDI, og 26 prosent i GMFM-66. Både individualiserte og standardiserte verktøy viste klinisk viktig endring (p<.002), men ikke positiv korrelasjon. Korrelasjon mellom antall oppnådde mål og forbedret endringsskår varierte for det individuelle barnet. Konklusjon: COPM og PEDI er i større grad enn GMFM reflektert i foreldrevalgte GAS mål. COPM kan ivareta en familiesentrert praksis ved å fremme foreldres identifisering av aktivitetsproblemer. PEDI og GMFM sikrer en standardisert evaluering over tid. Alle instrumentene var sensitive for endring, og lav korrelasjon indikerer at de evaluerer forskjellige aspekter ved motorisk funksjo

Utvikling av motoriske ferdigheter hos førskolebarn med Prader-Willis syndrom en eksplorerende multicasestudie

Hensikt: Å kartlegge utvikling av motoriske ferdigheter hos barn med Prader-Willis syndrom (PWS) gjennom førskolealder, og sammenligne det enkelte barns utvikling med definerte aldersnormer. Design: En eksplorerende multicasestudie. Materiale: Seks barn med PWS ble rekruttert gjennom Frambu senter for sjeldne funksjonshemninger. Ingen hadde fått veksthormon ved inkludering i studien. Fem fikk behandling fra fire års alder. Metode: Regelmessig kartlegging, i alt fem ganger, fra to til fem års alder med bruk av den motoriske skalaen i Bayley-II Scales of Infant Development og skalaen for funksjonelle forflytningsferdigheter i Pediatric Evaluation of Disability Inventory. Oppnåelse av motoriske milepæler ble rapport fra foreldrene. Resultat: Alle barna var betydelig forsinket i sin utvikling av motoriske ferdigheter, og de hadde noe ulike utviklingsforløp. Spørsmål om en mulig sammenheng mellom varighet av sondeernæring og motorisk utvikling ble reist. Veksthormonbehandling fra fire års alder synes ikke å akselerere den motoriske utviklingen i særlig grad. Konklusjon: Den forsinkete motoriske utviklingen hos barn med PWS innebærer at de bør følges systematisk helt fra starten og gjennom førskolealder med bruk av både diskriminerende og evaluerende kartleggingsverktøy. Nøkkelord: Prader-Willis syndrom, motorisk utvikling, fysioterap

Family-centred practices in the provision of interventions and services in primary health care: A survey of parents of preschool children with cerebral palsy

The aims of this study were to explore how parents of preschoolers with cerebral palsy (CP) experienced the level of family-centred services using the Measure of Processes of Care (MPOC- 20) within primary health care in Norway and to examine the relationships between these experiences and the provided everyday skills interventions and services. A survey was sent to 360 parents of preschool children with CP. The response rate was 34%. Of the MPOC scales respectful and supportive care and coordinated and comprehensive care received the highest ratings, and providing general information received the lowest. Our findings indicate lower levels of family centredness in primary health-care contexts than that reported in specialist health care. Significant positive associations were found between all the five MPOC-20 scales and the parents’ satisfaction with the amount of service coordination (p ¼ .000–.004). The high scores for respectful and supportive care and the low scores for general information indicate that the families experienced relational help giving practices to a larger extent and participatory practices to a lesser extent. To increase the participatory aspects of family-centred practice, further research needs to address facilitators and barriers of information sharing and ways of giving this information both in specialist and primary health care

Micro-processes in social and learning activities at school generate exclusions for children with disabilities

This study explores children’s everyday life activities in their first year at school, revealing a variety of situated activities that involved interactions between the child, peers and (para) professionals. We sought to examine how a child with a disability encounters opportunities and space for participation in these peer interactions and multi-professional encounters. We observed eight children with disabilities (six years of age) in a primary mainstream school and conducted interviews/dialogue with the children, professionals and paraprofessional assistants. Observation of a variety of activities revealed that seemingly insignificant processes of exclusion during the day could have implications far beyond the singular situations. Professional actions to support the child with a disability may produce micro-processes that hamper participation. The study’s key messages include the need to pay attention to how socio-material and pedagogical environments are organized and to use observational sensitivity to the micro-processes at play during the school day to improve the learning environment for all children

Family-centered services for children with disabilities – from abstract ideals to concrete practices

Introduction: Family-centred services (FCS) are considered best practice in paediatric rehabilitation. It is therefore of interest to investigate the professional basis of FCS and how this theoretical and empirical groundwork can be transferred into concrete practices. Main part: FCS is based on a set of principles that are embedded in ecological system theories of development, and within a capacity-building intervention paradigm. Such a paradigm emphasizes the strengthening of family empowerment and self-efficacy through active involvement of the child and parent. One example detailed in the literature shows how physiotherapists can make use of capacity-building strategies to involve the family in planning and implementation of interventions. Conclusion: By explaining the theoretical and empirical basis for FCS, the article contributes to the development of family-centred paediatric physiotherapy practices. Family-centred physiotherapy requires physiotherapists to work with families in ways that reinforce a parent’s competence in using everyday learning opportunities to support the child’s development.

Changing Perspectives and Practice in Habilitation in Norway. A Study of Physiotherapists' Assessment of Children with Cerrebral Palsy, Based on ICIDH-2, 1998

The project objective was to describe and discuss physiotherapists information gathering and decision making as a basis for assessing children with cerrebral palsy, based on ICIDH-2. Over the last twenty years there have been beydelige changes in care ideologies and theoretical reference frames for habilitation. The study's first part, which is a literature review, shows that these changes are so extensive, and have so many common characteristics that they can be said to have created a new paradigm for physiotherapy assessment of children with neurological disorders - from function-oriented to participation oriented treatment. The study's second part is an empirical study of a group of physiotherapists collection of information when studying children with cerebral palsy. The data has been collected in two ways: 1) through a postal survey based on WHO's "International Classification and Impairments, Activities and Participation" (ICIDH-2) and 2) through investigation reports from a sample of physiotherapists who participated in the survey. Since the study's key concepts are built around ICIDH-2 the system's suitability to describe the information physiotherapists collect are also discussed. The core of the physiotherapist's assessments can be summarized in the concept of motion: motion assumptions, basic movement activities, movement quality and use of assistive devices that can compensate for reduced mobility. The physiotherapists also frequently collect information on a wide range of other impairments and activities, while the extent of participation-oriented information seems to be less. The information is obtained from many different sources. Additional tests of the child on business premises is emerging as the primary source by collecting central information. The literature review showed that over the past ten years good assessment tool have been developed for children with cerebral palse. These are seldom used by physiotherapists in the material. Overall, it seems physiotherapist's information retrieval is rooted in functional rehabilitation, but it also includes elements that might be related to participation oriented habilitation. The results indicate that the chapters and categories the study has drawn from ICIDH-2 capture essential parts of the information physiotherapists collect, and that most categories are operationalized so that they can be recognized in the physiotherapist's language

Forskning med nye aktører - forskningskvalitet og nytteverdi

Hensikten med kapitlet er å gi økt forståelse av hvordan forsknings-kvalitet og nytteverdi kan begrepsfestes og evalueres når brukerne blir samprodusenter i forskning. To hovedspørsmål stilles: Hva kjennetegner forskningskvalitet i et sampro-duksjonsperspektiv, og hvordan kan forskningskvalitet evalueres? Og hva er potensiell nytte av samproduksjon i forskning, og hvordan kan nytteverdien av brukerinvolvering dokumenteres? Spørsmålene søkes besvart gjennom en systematisk gjennomgang av artikler som har oppsummert kunnskapsstatus på feltet. Gjennomgangen viser at det er behov for en mer integrert forståelse av forskningskvalitet og nytteverdi som tar opp i seg de ulike målsettingene med samprodusert forskning. Hvordan ulike former for kunn-skap kan integreres i ulike kontekster, krever særskilt oppmerksomhet dersom en skal lykkes med å utnytte potensialet som ligger i samprodusert forsknin

Forskning med nye aktører: Forskningskvalitet og nytteverdi

Hensikten med kapitlet er å gi økt forståelse av hvordan forskningskvalitet og nytteverdi kan begrepsfestes og evalueres når brukerne blir samprodusenter i forskning. To hovedspørsmål stilles: Hva kjennetegner forskningskvalitet i et samproduksjonsperspektiv, og hvordan kan forskningskvalitet evalueres? Og hva er potensiell nytte av samproduksjon i forskning, og hvordan kan nytteverdien av brukerinvolvering dokumenteres? Spørsmålene søkes besvart gjennom en systematisk gjennomgang av artikler som har oppsummert kunnskapsstatus på feltet. Gjennomgangen viser at det er behov for en mer integrert forståelse av forskningskvalitet og nytteverdi som tar opp i seg de ulike målsettingene med samprodusert forskning. Hvordan ulike former for kunnskap kan integreres i ulike kontekster, krever særskilt oppmerksomhet dersom en skal lykkes med å utnytte potensialet som ligger i samprodusert forskning

Development of motor skills in preschool children with Prader-Willi syndrome: an explorative multicase study

Purpose: To track the development of motor skills in children with Prader-Willi Syndrome (PWS) during preschool age, and compare the motor development with defined age norms. Design: An explorative multicase study. Materials: Six children with PWS, recruited from Frambu Resource Centre for Rare Disorders. When entering the study, none had received growth hormone treatment (GHT). Five started about the age of four. Methods: Each child was assessed five times, between the age of two and five, using the Motor Scale of Bayley-II Scales of Infant Development and the Functional Mobility Skills Scale in Pediatric Evaluation of Disability Inventory. Motor development milestones were reported by the parents. Results: All children were significantly delayed in motor development, and showed variations in developmental patterns. A question was raised about a potential relationship between duration of tube feeding and motor development. GHT by the age of four seemed to have limited influence on the individual trajectories of motor scores. Conclusion: The findings of the delayed motor development in children with PWS support present knowledge and highlight the need for standardized follow-up of these children during preschool age